New here - wanting to share

[michellecairn]

Hi, my name is Michelle. I am 38 years old. I am married, and have 2 children ages 17 and 14. I feel that I need to share what I have gone through. Any thoughts, comments, advice would be welcomed. This is going to be quite long, so I really apologize in advance.

I expected to get cancer sometime in my life. There is a family history of cancer, but I never thought I would have colon cancer, and I certainly didn’t expect to have cancer at 38.
As far as the family history goes, my paternal grandmother had uterine cancer and passed away in the early 80’s. My mother was adopted, so I do not have any medical history whatsoever on my mother’s side.

My mother was diagnosed with breast cancer in October of 1988, had a mastectomy, and went through 6 months of chemo. She was told she was in remission in June 1989, but in October of 1989 she went back to the doctor because she had lingering swollen glands from a cold she had in August. The cancer had returned and spread to her lymph nodes. December 14th was her 40th birthday. By Christmas of 1989 she was retaining fluid in her abdomen, and looked pregnant. She was in the hospital over the New Year where they drained 2 quarts of fluid from her abdomen, but it all came back within 12 hours. She came home a few days later, and then she passed away the morning of January 11, 1990. I was 12 years old, my sister was 9. I knew she had cancer, and I knew she was sick, but even though no one ever came out and said it, I knew she was dying. That morning we had a special homeroom class at school and the teacher asked the class that morning if any of us knew someone who had died. I raised my hand and told the class that my grandpa had died a few years before, but I also told them my mom was dying. It was about the same time I was called on that my mother had passed. I didn’t know until after school that she had passed, as my father didn’t pull myself or my sister out of school that day.
My father was diagnosed with lung cancer in late May of 2003. He didn’t want any treatments. We kept him as comfortable as possible, and he passed away the morning of July 19, 2003. He was 55. I was 26, my sister was 23.

I know what it feels like both as a child and an adult to watch someone you love battle cancer. I have walked in those shoes. My first thought when I was told I had cancer was how are my children going to deal with this and how can I make it easier on them?

My own medical history is a little complex. I was born with bronchial asthma and was in and out of the hospital a lot as a young child. As an adult my asthma is under control for the most part except when I get sick with a cold or something. I also have a blood clotting disorder that was diagnosed in May 2006 called Factor V Leiden. Basically my blood is too thick and has a tendency to clot. I found this out when I ended up in the hospital with a double pulmonary embolism. Because of the clotting disorder I was put on warfarin and basically advised by the hematologist (who was also my father’s oncologist) to take blood thinners for the rest of my life because I ended up with the two copies of the defective gene.

In May 2014, my primary doctor decided to switch me from the warfarin to Xarelto. His reasoning was good, I would go stretches where I would forget to take the warfarin, and then I would skip my appointments to get my pro time/INR levels checked because I knew they were going to be off and that the warfarin dose would be adjusted. With the Xarelto there would just be the one pill a day and no more pro time/INR checking monthly, and no more trying to remember how many milligrams of warfarin I needed to take that day.

After being on the Xarelto for about a month, I kind of noticed I seemed gassier than normal and maybe on occasion a bit bloated. I also had a bit of nausea at the time too. I looked at the side effects, and those weren’t really mentioned. I told my doctor, and he suggested I give it a little more time, and to take half a dose if necessary. Those pills are triangular shaped and are smaller than kitty kibble. I just continued to take a whole pill. After 6 months I still was gassy, and I started asking to go back to the warfarin. My doctor refused to switch me back because I had gotten so lax with the pro time/INR testing. So on the Xarelto I stayed.

In mid-August of this year, I started to notice that if I drank coffee from a specific gas station I would get heartburn, and I also was feeling a little bloated, but not too bad, and I had a stomachache every now and then. I still was gassy but that had become my new normal. I specifically remember mentioning all of that to one of my supervisors at work.
On September 14th I went to work as normal, and that day I had to distribute bundles of flyers to the different stations in the building. The bundles are probably less than 10 pounds each, and usually I move 2 at a time. For some reason that day I seemed to be having pain in my sides, and right under my rib cage in the upper part of my abdomen. I just tried to shake it off and just moved a bit slower the rest of the day.

On September 16th about an hour after dinner I was having pain right in the center of my abdomen just under my rib cage. The pain was so severe that I was doubled over. I had my husband take me to the ER. They suspected that that it was my gallbladder. They did an ultrasound of the gallbladder, kidneys, and appendix and all came back normal. They gave me morphine while I was there, sent me home with Percocet, and referred me to a GI doctor and ordered a HIDA scan (it tests the function of the gallbladder) which I needed to call to schedule the next day. The next morning I scheduled the HIDA scan for the Following Monday, and the GI appointment for Tuesday.

The morning of September 19th I woke up and was having a pain in my lower right side that kind of felt someone was pulling me from the inside out. It was bad enough that I was unable to get into a sitting position from lying down. I had to roll over and wiggle myself out of bed. I basically brushed it off and went about my normal activities, and although I was in pain it seemed to be less pain the more I moved around. As the days went on I had a constant stomachache where basically it felt as though I had been punched in the stomach. The Percocet really wasn’t helping for the pain.
September 21st I went to my appointment for the HIDA scan only to find out that I apparently scheduled it for the next morning (why I would write Monday when they said Tuesday is beyond me). So I went back home. I had the scan the morning of September 22, and then saw the GI doctor later that afternoon. The HIDA scan showed my gallbladder was functioning normally so that was a bit of a disappointment only because I was still in a lot of pain, and a bit bloated. The GI doctor felt my abdomen, and basically wanted to do a CT scan of my stomach and liver and an endoscopy, which I had scheduled for that Friday and Saturday.

Thursday morning, September 24th I woke up again to the severe inside out pulling pain on my right side. This time I couldn’t even manage to wiggle out of bed. My husband had to help me get up. I told him something was seriously wrong, so back to the ER we go. This time they decide to do an ultrasound of my ovaries and uterus. The doctor comes back and says that I have a hemorrhagic ovarian cyst and that I’m bleeding internally. He says the amount of blood that I had floating around in my abdomen was about the size of a grapefruit and that’s why I had been in so much pain. The bad thing with the internal bleeding is that I was taking the Xarelto which basically has no antidote to stop the bleeding other than stopping the medication. I told the ER doctor that I wanted to stop the Xarelto completely and go back to taking the warfarin. The ER doctor had called my primary doctor and OBGYN to let them know what was going on, and told me to follow up with each doctor the next week. They couldn’t do anything for the bleeding other than hold my blood thinners and let the blood and fluids reabsorb naturally back into my body. They sent me home, and since I had this new diagnosis of the hemorrhagic cyst I was confident that this is where all of my abdominal pain was coming from I cancelled the endoscopy, and CT scan that I had scheduled for the weekend.
Monday, September 28th I saw my primary doctor, and was quite glad/shocked when he told me that the ER doctor had relayed the message about me wanting to switch back to the warfarin. I promised my doctor that I would do a pro time/INR every day if he would just switch me back. He did switch me back to the warfarin, so I needed to come back the following week to check my pro time/INR.
Wednesday, September 30th I saw my OBGYN. He basically said the cyst was “normal” and that instead of mine bursting it was just bleeding. He wanted me to have a repeat ultrasound in 24-48 hours to make sure it had resolved itself before doing any further testing/procedures. To make matters worse, I ended up getting my period that day, and I suffer from horrible cramps on a normal basis, so this added to all of the abdominal pain I had been having this entire time.

Friday, October 2nd I have the ultrasound done. My OBGYN calls later that afternoon saying the cyst has resolved itself, and that they would see me at my follow up appointment on the 13th. I called them back later asking why I was still in so much pain if the cyst had indeed resolved itself. They really didn’t have an answer other than the blood/fluids probably needed more time to reabsorb back into my body.

Sunday, October 4th I felt extremely bloated. Basically since my first initial visit to the ER I had been feeling bloated, and had the constant punched in the stomach pain. I felt worse after eating, and was unable to eat a normal sized meal. Basically I was eating about ¼ of what I normally would in a sitting because after I ate I felt like I just had Thanksgiving dinner. I also hadn’t been sleeping well because I was unable to lay in any position to sleep other than flat on my back because every time I rolled over it felt like everything inside my abdomen was moving around. My daughter and I had gone to one of those Thirty-One parties that afternoon, and as the afternoon went on I felt worse and worse, so I had her take me back to the ER. My husband was at work at the time, and I knew I wouldn’t be able to get ahold of him for a little while.

We got there around 3:00 in the afternoon, and the ER decides they are going to do a CT of my abdomen. So now I need to drink the contrast water over and hour and a half before they can do the scan. I got ahold of my husband around 6:00 pm to let him know what was going on. They finally took me back for the scan at 7:00 pm. I felt so bad having my daughter sit there waiting that I finally sent her home just so she could have dinner and not have to wait for what was seeming like forever for the doctors to come back with results. I told her I would call her when I was done if I needed her to come back to pick me up since I knew my husband would be leaving work soon, and I knew if I was still at the hospital he would come right there even though he works an hour away.
The ER doctor comes back in around 8:30, pm and tells me that the CT scan is concerning for peritoneal carcinomatosis. I was like huh? He explained that the peritoneum was the sack that kind of covers all of your internal organs. I was in shock obviously and only really concerned about the carcinomatosis part which I knew meant cancer. He said he called my OBGYN and spoke to the doctor on call and that I needed to call them in the morning. They also said that the peritoneum on my right side was really inflamed and that’s why I was in all this pain. They discharged me, and my husband arrived about 5 minutes after that. I told my husband what they told me, and obviously we were in a state of disbelief.

We got home, and I actually was able to sleep a bit better that night probably because of the pain meds they had given me in the ER. I woke the next morning around 9:30 to find my OBGYN had called at 7:45 wanting to see me ASAP. I called them back, and they wanted me in at 10:15. The OBGYN comes in the room and I tell him the ER is telling me I have cancer, and he proceeds to tell me that he feels that the CT scan is just showing residual blood clots left over from the hemorrhagic ovarian cyst and that he doesn’t think I have cancer. He wants to do a diagnostic laparoscopy to see what’s going on. So I get scheduled for surgery for the next morning.

Tuesday, October 6th I go in for my surgery. My husband was a bit nervous, because he had to fill in for his boss all week, and was unable to stay for my surgery. I had my sister in law there as my ride home. I remember waking up from my surgery and my OBGYN coming in to talk to me telling me that he was wrong, and that he did find evidence of the peritoneal carcinomatosis. There were also some of those cells/lesion/tumors on the ovary that had had the cyst, but he reassured me that what was on the ovary was not what he knew to be ovarian cancer. He took a few biopsies, and said there was a spot near the near my liver that he tried to biopsy but it started to bleed when he touched it, so he left it alone. He also said there was a little bit of fluid in my abdomen, which he drained, and that made my stomach feel so much better.

The morning of Wednesday, October 7th my OBGYN calls me personally and tells me the pathology report came back and the results are positive for signet ring cell carcinoma. The report goes to say that it supports a gastrointestinal primary. With the location in particular the stomach is the most common primary site for signet ring cell carcinoma. Other possibilities include breast and gallbladder, and very rarely ovary. My OBGYN then refers me to an OBGYN oncologist at the big cancer hospital an hour away.

Later that afternoon the cancer hospital calls me and schedules the appointment with the OBGYN oncologist for the following Tuesday, October 13th. They explained they were requesting my pathology slides and they were going to look at them to determine if the cancer is OB related, and if not they will get me to the right specialty oncologist. Needless to say they called me back on Monday, October 12th to tell me that the cells seem to be GI related and they need to get me to see the GI oncologist. They can’t get me in until the following Wednesday, October 21.

Every thought imaginable had already been going through my head for the previous week, and now I find out I have to wait another week with basically no answers.

Wednesday, October 21 comes, and my mother in law and sister in law take me up to the cancer hospital where my husband is meeting us from work since he works near the hospital. We meet with the doctor, who basically made it sound like I should have been in to see him sooner (which they said they couldn’t get me in) because he feels that I have a very aggressive form of cancer and that I probably haven’t had it for very long, and that he doesn’t think there is a “cure” for me. Now mind you all he is going on at this point in time is the CT scan I had done on the 4th, and the results from the biopsies done during the surgery. I have had no other tests done prior to seeing him. He then goes on to say that he wants to admit me to the hospital so that they can do a better CT scan, and then do a colonoscopy and an endoscopy. Then after that he wants to get a port placed and start chemotherapy right away.

I asked if I would be able to go home first so that I could see my children because we weren’t expecting me to have to stay at the hospital and I just wanted to let them know what was going on. He basically said that if I stayed right then I would be able to be home for the weekend, so I made the decision to stay, and my sister in law promised to get the kids picked up and bring them up to the hospital later that evening.

After a few hours of waiting they finally had a room ready for me. My sister in law brought the kids to see me, and I explained to them that I would be there through at least Friday. My husband refused to leave my side the entire time other than for moving the car and grabbing something to eat. They then took me back for a new CT scan and scheduled the colonoscopy and endoscopy for Friday.
Thursday morning they let me eat a normal breakfast, but put me on the clear liquid at lunch. They brought me the lovely gallon of yuck at 2:00 pm and told me I had until 6:00 pm to drink it. I’m not a big drinker at all. I’m lucky if I would even consume 40 ounces of liquid in an entire day much less a gallon in 4 hours. Needless to say I was still drinking it at noon on Friday. Now honestly if they told me that if I drank it quickly I would be cleared out quicker I may have tried a bit harder to drink it faster.

Thursday afternoon the GI oncologist comes in and tells us that the CT scans shows there is thickening of the colon wall and they already see an increase of the cancer form the previous scan and that they primary cancer is stemming from the colon. What he didn’t tell us and we found out from the other GI oncologist and physician’s assistant making rounds is that the original CT scans from October 4th were 5mm slices, and the one from the cancer hospital were 1mm slices. So I really didn’t understand how they could actually say they saw cancer growth. He then goes on to say that after the colonoscopy and endoscopy they will put the port in and start chemo and that I may be able to go home on Monday after he had already said I’d be home for the weekend.

By this point, (actually as we were waiting for the hospital room) we decided we didn’t like this GI oncologist, and that we wanted to see someone closer to home. I wanted to see the hematologist/oncologist that I had originally seen for my Factor V Leiden and who had treated my father. They started to set up that appointment, but I would be considered a new patient because I hadn’t seen him for 9 years, and he wouldn’t be able to get me in for a month. So we scheduled with the other oncologist in his office. My appointment was scheduled for Tuesday, October 27th.
Friday afternoon comes, and they need to check my pro time/INR levels to make sure I won’t bleed out during the procedures. It wasn’t a huge issue when I had the diagnostic laparoscopy that found the cancer because I had just restarted the warfarin and I wasn’t yet in therapeutic range. So my numbers come back, and they need to give me a plasma transfusion because my blood is too thin. They started the transfusion and I’m supposed to get 3 bags of plasma. Needless to say it was just my luck that as the 2nd bag was finishing up I got an allergic reaction (hives) to the plasma which they had warned me could happen. They gave me Benadryl which in turn tanked my vital signs so they refused to do the colonoscopy and endoscopy for my safety. Obviously we were quite disappointed to have me go through all of that to basically get no answers again. They sent me home, and now I had to wait until Tuesday to see the new oncologist.

Tuesday, October 27th I see the new oncologist and she is a newer doctor and definitely had a better bedside manner than the GI oncologist. She ordered a colonoscopy and endoscopy for that Thursday, and a port to be placed on Friday and wanted to start chemo the following Monday. She really couldn’t give us any more answers other than what we already knew. She did say she wanted to treat me as aggressive as possible because I do have an aggressive form of cancer and because of my age. She was recommending I start with FOLFIRINOX. She said we would do 4 rounds of chemo and then have a repeat CT scan and then possibly a de-bulking surgery. (Still not even sure what that means).

Luckily for me I hadn’t been eating too much since I was discharged from the hospital, and I managed to get away with only drinking ¾ of one bottle of a different colon prep they gave me. I had the colonoscopy and endoscopy done. Nothing was found in the endoscopy but they did take some biopsies from the colon. I had the port placed the next day.

I was scheduled to go back to see the oncologist on November 9th and to start chemo that day. Unfortunately, as it was explained to us the FOLFIRINOX is treatment approved for pancreatic cancer which I do not have, so the insurance company denied the chemo. The doctor needed to resubmit for FOLFOX which is the approved treatment for colon cancer. So I was unable to start chemo that day. The computers were also down so the doctor basically was explaining things from memory when she said she had reviewed my file the night before. Basically my cancer is in the transverse colon and that’s why I had been having all of the upper abdominal pain. She said she hopes that the chemo will shrink what is there and that I wouldn’t have as much pain anymore.
Later in the week we finally got approval for the chemo, so I was scheduled to start Monday, November 16th. We go in for the appointment, and lo and behold the insurance company comes back and had approved both the FOLFIRINOX and FOLFOX, so they decided on the FOLFIRINOX.

As I’m eating my lunch while getting the chemo all of the sudden I felt this wave of “I don’t feel good” wash over me. I have my husband go get the nurse, and she’s asking me what’s wrong. I’m trying to explain it to her, and I notice I’m talking funny. So now I’m trying to tell her I just don’t feel right, and that I’m talking funny. Sure enough I’m having an allergic reaction. My tongue is swelling up. At this point in time I’m receiving the irinotecan and the leucovorin. They give me Benadryl and stop the irinotecan and just run the leucovorin. After the leucovorin is done they start running the irinotecan again. About a half hour later my tongue is swelling again, so now they deem I’m allergic to it, and they stop it completely. I got about ¾ of the bag.

They did tell me that after having chemo you will have a few bad days and usually those are somewhere between days 3-5. My husband goes hunting every year, and although I was starting chemo I wanted him to go on his hunting trip more so for the fact that he has been my rock and I felt he needed to do something for himself because obviously cancer affects the whole family not just the person who has it. We had everything planned – my sister in law was going to stay at my house to babysit me in case I got sick, and he was leaving Wednesday and coming back Monday.

Things were going ok, I felt a bit tired but that was to be expected. I also had started having a reaction to certain smells so I had a blanket with me that I had saturated in Febreeze that I could sniff when I needed to. My biggest fear (and still is) is throwing up. I had not thrown up in almost 16 years. That Saturday, November 21 we had a snowstorm, and my power went out, so I had a friend come take me to her house so she could babysit me while my sister in law took care of the snow issues that related to their business. My friend made me some type of casserole for dinner with just ground beef, shells, and tomato soup all baked down. After I got home, I had 2 of my sister in laws here (the original babysitter one, and the other one was here to give me a blood thinner shot), and I was eating the casserole. I only ate a small bit of it before I threw up. It wasn’t pretty – I guess it never is. After getting sick I was now scared to eat or drink because I didn’t want to get sick again. Not very rational I know. SO Sunday morning rolled around, and I’m super weak and can barely sit up. My sister in law calls the doctor and they tell me to go to the ER to get fluids. I got the fluids and extra nausea medicine and get sent home. I felt a little better after getting the fluids, but not much. My husband ended up coming home later that afternoon because he had been worried about me.
Monday, November 23rd I was in worse shape. I had an appointment with the oncologist, and my husband dropped me off at the door, and I just went and sat down. I didn’t have the strength to check in. When they called me back for the bloodwork, my head stared to sweat, and I really felt I need to lay down, so the phlebotomist finally put the chair back a bit. They then put me in an exam room where I laid on the table and basically didn’t move. My blood pressure was 80/50. The doctor comes in the room and asked my husband how he even got me there because I was just so weak. She looked at my bloodwork numbers and basically said they were good, and really did not reflect the person she was seeing in front of her. She sent me back to the infusion room to get fluids. Luckily they have 2 rooms that have actual beds, so I could lie down.

In the fluids they gave me saline, dexamethasone, zofran, and lorazepam. It was then decided that I would get this round of fluids every day through Thanksgiving. Then the doctor decided that on chemo weeks I will get the fluids on Wednesdays when I get disconnected from the 5FU and Friday through Sundays. This has been working well and I have not been sick or super fatigued since that first week. I also take a dexamethasone pill every morning, and I did notice when I forgot to take it on Christmas Eve.

The last time I got to see the doctor was on December 14th. She added avastin to my chemo cocktail. She is now recommending 6 rounds of chemo and then the follow up CT scan. No mention of any surgery at all at this point in time. I don’t even know if there is anything surgical wise they can do. So I’m still sitting in a bit of limbo at the moment. I’ve been trying to get her to let me go back to work on a very tight hourly and physical restriction only because I’m going crazy sitting home. I haven’t worked since the day they found the hemorrhagic ovarian cyst. I’ve also gotten a lot weaker since I haven’t been working, so I know I can’t do all of the things I’m used to doing at work anyways. She keeps telling me maybe after the New Year. I’ve also been scheduled for physical therapy for cancer weakness for the next month.

Wednesday, December 16th I saw the genetic counselor. She showed me a report from November 16th where they tested a tumor (I’m guessing from the colonoscopy since no one has really said “you have a tumor”). When I think of the word tumor I think of a little ball at least the size of a nickel or larger, but I know that the cancer cells I have are considered a flat cancer and are harder to detect. They tested it for the different gene mutations associated with Lynch Syndrome, and it came back as abnormal for the MSH6 gene. The counselor basically said she wouldn’t really have put me at a high risk for getting cancer by looking at the family tree, other than the unknown medical history from my mother’s side. She seemed pretty confident that the genetic test will come back positive for Lynch Syndrome. I should get the results sometime next month.

I finished my 4th round of chemo this afternoon. I feel very fortunate that I haven’t been as sick as I was the first round. I’m not sure if the extra fluids I’m getting chemo weeks are helping in that regard, but I don’t want to try to go without them.

After my first round of chemo I don’t have much abdominal pain anymore. However, I get distended and bloated on a daily basis. It’s not bad in the mornings, but depending on what and how much I eat during the day, it can get pretty bad by evening to the point where it is a bit difficult to breathe. Most days I look pregnant.

My hair is thinning, I’m okay with that. I basically cut off 12 inches right after I found out I had cancer in anticipation of going bald. That has yet to happen. I do have the cold sensitivity from the oxaliplatin. The first round was just fingers and throat. It went away in 4 days. The second round, the fingers stayed sensitive the entire time, but the throat went away after a week. The third round it went away after a week again. This round which started Monday, I have the fingers, throat, and now have the sensitivity in my lower calves and upper thighs, so we will see how long it lasts. I also found out yesterday that the toilet seat was too cold for me at my mother in laws house - the feeling was super weird but that made me laugh a bit.

I guess the other important thing I wanted to say is that I before I even saw an oncologist for the first time I didn’t want to know the stage of this cancer, although I’m sure it’s staged at III or IV only because it has spread to the peritoneum. I also don’t want to know how long the doctors think I will be able to survive with this cancer. I realize I have a rare form of aggressive cancer with it being the signet ring cell carcinoma. I have also refrained myself from googling too much into survival rates and such. I’m choosing to stay positive and live my life as normally as I can through these treatments, and I feel that if and when treatments don’t work for me I will know that in my heart instead of the doctors giving me a timeline. Like everyone else I’m hoping to have many years left to live.
I did give permission for the doctors to discuss the stage and prognosis with both my aunt (who is an RN) and my mother in law. My husband has chosen to not know the specifics only because I chose not to know. My little printouts from the doctor’s office state that I have malignant neoplasm of transverse colon as the primary along with the signet ring cell carcinoma.

I don’t know that I have any huge concerns about my current treatment other than the bloating and distention I get in my abdomen. Is there an actual tumor in there somewhere growing, or am I retaining fluid from somewhere? There are other days that I feel that I want to get another opinion at the Cancer Treatment Center of America because there is one close by, but I am still on the fence about that.

I apologize once again that this is quite long, but I felt I needed to get it out there to someone who may understand a bit more because they’ve experienced something similar. I appreciate the time you have taken to read this.

[O Stoma Mia]

I think it would help if you could create a Signature that briefly and succinctly summarizes your current diagnosis and tells where you are in your current treatment regimen. In other words, what was your primary diagnosis, where was the primary tumor located, and what was done to remove the primary tumor? Your post is far too long for most people to read in its entirety. We need a short, focused summary to determine whether or not we have any comments to offer.

Here's a link to the Signature creation page along with some other info:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

Edit: Thanks for creating your Signature

.

[Ron50]

Hugs Michelle, You have had an awful time of it. I am very sorry for what you have gone thru and will go thru. I wish there was something that I could do to help at times like this ,all I can do is to wish you well and hope for the best. Sometimes we do beat the odds. I had an aggressive stage 3 c tumour in my transverse and descending colon. I had surgery and 48 weeks of chemo. I lucked out and have been cancer free for 17 years. Try to hang in there the longer you can survive the more chance you may be around for the next breakthrough in cancer treatment. Good luck Ron.

[Travelgirl]

Wow girl... I feel for you. Stay strong and as hard as it for me to do to myself .. Stay possitive..

But your story makes me wonder about myself.. And how the past 13 yrs I have been complaining to doctors about my right side pains that started with my appendix being removed, then what I thought was my gallbladder, they claimed was acid reflex. Just take Prevacid and you will be fine.

Then my uterus was enlarged 2 1/2 pounds instead of 5 ounces. This was what they thought was my stomach problems. They removed the uterus and sliced my colon during surgery . So needless to say at 50 I wasn't able to get my first colposcopy..

I been complaining on and off for years about foods making me sick. All the doctors would say is, then just don't eat that not all foods agree with people.

Thee months ago I ate Chinese food and ended up in the ER cause the next few weeks I had acid reflex so bad it started lasting 24 hours a day with my chest feeling like I drank a poison along with shooting pains to my jaw and added bonus pain, like I wasn't hurting enough, it felt like someone was sticking a dagger through my chest. The Whole chest hurt. The pain was severe from my jaw to my stomach the whole area.

I had an endoscope and. Colonopscopy ..They said I had H Prlori bacteria infection that was the cause of my stomach issues and acid reflex which they renamed to Gerd and found 5 mm precancerous polyp which need to be removed.

I got an appointment at mayo clinic and why they re afinding well let's just say. I am numb beyond numb. But I still have hope.


Now I am still in the testing stages to determine my cecum colon cancer stage or if I am one of those super lucky people who gets diagnosed with two cancers. I have a lymph node that is enlarged in a strange area,.they also suspect I may have Lynch Syndrome too...

I wish you best what hospital are you going to? I recommend seeking out the best..and getting a few opinions. I had a few opinions myself.that is how I ended up at mayo..

Hang in there..

[michellecairn]

O Stoma Mia – When they first told me I had cancer on they said it was peritoneal carcinomatosis and it was a signet ring cell carcinoma. When I saw the oncologist for the first time they said that the primary site is my colon. They just said they see thickening of the colon wall.

All the printouts from the doctor say malignant neoplasm of transverse colon as the primary cancer.
I’m still really unsure at this point if there is an actual tumor somewhere, I’ve asked my doctor, and I really don’t get an answer. From what I understood only small biopsies were taken during my colonoscopy.

When I saw the genetic counselor, she showed me the paper where it said a tumor was tested and it came back abnormal for the MSH6 gene. That was the first time I had even heard the word tumor in regards to my cancer.

The doctors mentioned a de-bulking surgery in the very beginning (whatever that means) but I asked again during round 3 of chemo, and was told we will wait to see what the CT scan shows after round 6 of chemo.

My only main concern is the distension/bloating that I have in my abdomen. Basically I’m rock hard for the most part in the transverse colon area right underneath my ribcage. Somedays my entire stomach will bloat out as well.

I'm also guessing there are more questions that I should be asking my doctor, but I'm at a loss as to what things to ask about.

[michellecairn]

Ron – Thank you for the well wishes - you give me hope that I can and will survive through this! I’m very glad that you have beaten the odds, and I can only hope that I can say the same thing in 17 years as well.

[michellecairn]

Travel Girl – I thought about going to Mayo when I was sitting around waiting the 2 weeks waiting to see an oncologist. I still ponder it. I’m fortunate to live in between Milwaukee and Chicago, so there are a few different options around for me to choose from including Mayo.

I was originally referred to Froedert & the Medical College of Wisconsin for my initial oncologist visit. Needless to say I was not happy with the bedside manner of the oncologist I saw. So currently I am being treated locally through Aurora Healthcare. My current oncologist is wonderful, and I’ve been told that she tends to be aggressive in her treatment plans. The week I was really sick, she actually was stroking my forehead in the exam room and she said “I just want to make you feel better.”

I’ve googled the best places for cancer treatments because let’s face it we all want the best treatment to ensure the best possible outcome. There is a Cancer Treatment Center of America close to me, and Northwestern Memorial Hospital and University of Chicago Medical Center in Chicago. Plus the drive up to Mayo is feasible as well.

I know the waiting for answers is hard, and the numbness is just there. I literally had been lying on the couch staring at the ceiling just doing nothing for the first 6 weeks after I was diagnosed. I did nothing. I’m an avid reader who usually reads a book a day and I read nothing, and watched no tv for those 6 weeks. I still stare up there every now and again, but for the most part I try not to think about the what ifs. I’m taking each day as it comes.

I will pray and keep my fingers crossed for you that you don‘t get diagnosed with two cancers. I hope you get your answers soon.

[Travelgirl]

Michelle,

Thank you for kind words.

I am originally from the suburbs of Chicago. I grew up in Naperville. I moved to Florida five years ago. So I am familiar with hospitals in your area. My mom died from endometriosis cancer in 2002 at 59. She didn't want to listen to me and instead choose the convent doctors she knew, and felt comfortable with. She suffered from diabetes, high blood pressure, severe depression. I do believe if she would of listened to me, she would still be here today. When I did eventually get my mom to listen to me, it was too late. Don't be like her.

You are young, have a beautiful family that cares and loves you. You still have a great chance to beat all of this, if you seek out the best doctors in the field. If I am not mistaken, University of Chicago is the best your area has to offer? My uncle's girlfriend has breast cancer and he did a lot of research last year on hospital options in your area. That was the one with the highest ratings.

He wanted me to return to Chicago to seek out doctors. But I was lucky to get into mayo clinic in Jacksonville in two weeks. Being that I was a self referral that was extremely fast.

I highly recommend you contact the univeristy of Chicago medical center. At least go there for a second opinion. Your case is complicated. You really need to deal with the best.

Please keep us up to date on how your doing?

I will be praying for you as well..

It is a New Year, lets both put our heads up high and forge ahead to kick the shxx out of cancer.
God Bless you Girl..

[michellecairn]

Travel Girl,

I am in complete agreement that we need to start the New Year off right and focus on “kicking the shxx out of cancer!”

I think I’m going to see what my next scan shows before I seek out the 2nd opinion, I’m really just wishing they would do the scan now instead of after 2 more rounds of chemo so I can have more answers. After reading the many blog posts it just seems like a lot of people know things like lymph involvement, and other test results that I just haven’t had done. And I’m unsure as to if knowing these things will make things a bit easier for me to understand which direction I need to turn as far as treatment options go.

As I said before I have chosen not to find out the stage of my cancer, or what the doctors think would be my life expectancy at this point in time. I don’t want to get bogged down with negative thoughts and emotions or to have that define me in any way in regards to how I live my life. I just want to focus on the here and now and put one foot in front of the other and fight!

I know it helps to have a positive attitude when dealing with all of this, and sometimes it’s hard. I didn’t even let myself cry about it until I made the phone call to my aunt and uncle (whom I only see twice a year at Thanksgiving and Christmas). I guess I was feeling guilty in trying to get support from them when I don’t have much contact with them during the year, and because they were also very helpful and supportive when both of my parents battled their cancers. I just feel l guilty for putting them through this again. But they have been super generous and supportive .

My father in law passed in 2006 from breast cancer, I had only been dating my husband for about 7 months at the time. In order to honor his memory, the family decided to participate in the local American Cancer Society’s Relay for Life. We have been doing it every year since 2007.

My big contribution for our Relay team was to design the T-shirts with our team logo on the front, and a list of our survivors and lost loved ones to cancer on the back. Almost every year we change the shirt color depending on who we are choosing to remember or honor that year and unfortunately we have to add some names to the back. Right after my diagnosis my sister in law told me that now I would have to add my name to the shirt for this next year. I told her that I’m the designer of the shirt and that my name is not supposed to be on there yet if ever! We had a little laugh at that one.
Also – pre diagnosis I was a chain smoker – almost 2 packs a day. As I was lighting up a cigarette, someone in the family basically looked at me like I was crazy to still be smoking, and my sister in law (who is a CNA) told them “what’s is going to do to her now - she already has cancer?” We laughed at that one too.

I did end up quitting cold turkey on 10-26, for 6 weeks. Unfortunately I started back up again, and am trying really hard to kick the habit again. I’m making good strides so far. My husband is a smoker as well, but he is a very light smoker, so when I quit the first time, he basically didn’t smoke at home – just at work and in the car, and not around me at all. Once I started back up we said we wouldn’t smoke in the house so outside we went and I would space out a cigarette to no more than 1 every 2 hours. That has worked well up until this last week. I do have the cold sensitivity neuropathy from taking the oxaliplatin, and right after I got out of the infusion chair this past Monday (I had the heat turned on the chair) I got the pins and needles feeling in my upper calves/lower thighs/knee area. Because of living in Wisconsin, I’m now bundled up like an abominable snowman just to get to the car I can’t really stand outside long enough to have a cigarette which should be enough to get me to quit. However I have resorted to hiding in the basement for my cigarette and have been going longer and longer in between cigarettes. I’ve already rationed the cigarettes I have left in order to smoke that “last” one before bed tonight in hopes that I will be indeed an ex-smoker tomorrow.

Anyways, sorry for the long post again. You will be kept in my thoughts and prayers and I hope to hear updates from you as well. Happy New Year!

[Travelgirl]

Michelle,

You have to quit smoking.. I am not going to lie. I have been a smoker on and off for years. I grew up with two heavy smokers, my husband smokes. I did manage to quit again cold turkey back in August.. So far so good. I don't even feel like having one.

But my whole nightmare of being sick started with severe acid reflex, and like you, coffee making me feel sick.. I mean so sick I thought I drank cyanide.. That is what landed me in the hospital ER. They said see a GI dr and get an endoscope. Which I had done three weeks later, after I took off on a trip. I also had my first colonopspy at that time.

I am travel counselor and travel a lot. They discovered I had GERD caused H-Pylori which I probably picked up in some third world country. Plus the colonopscopy showed I had an ulcer in my cecum. The cecum ulcer tested negative for cancer two times by two different GI doctors.. Something told me to call mayo clinic. The doctors around here just seemed very unprofessional in their demeanor. They would get upset when I asked them questions like I was some paranoid patient.

I was lucky mayo got me in two weeks. There I don't even have to think straight. They been really good with being as quick as they can with answers. Especially since my visits have been in the last two weeks around the holidays. Plus they shuffle me between doctors and make the appointments for me. They have right now four appointments for me. Monday I will probably be getting a call from the surgeon about my pet scan and ct guided biopsy. I will know better what's up then?

I decided it is what it is with having cancer. I will not let it stop me.

I feel fine since they gave me a stronger acid reflex medicine. I had to give up coffee, that is harder than smokes to quit for me. I drank at least two pots a day. And I like my coffee strong black and with two shots of espresso in it.. So talk about a shock treatment. I need coffee to function, now I have to walk to gain energy and think straight.

I want you to go buy Gin Gins soft ginger candy. Only thing that keeps me off cigarettes. I bought them at a health food store. I was eating two bags a day. It took about month.. But so far I been smoke free since mid August. I keep them on me at all times in the event I want a cigarette. They calm the tummy and help you advert cigarettes. I also started taking a live 100 billion probiotic vitamin. That has also helped too. We need to build our immune systems back up. Now double check the probiotic with your doctor in case it interferes with what they have you on? Also KEEP moving as much as you can, walking. Go to an indoor mall and walk you keister off. Exercise shrinks tumors. Once you stop moving it wins.

But get the Ginger candy, if I can quit both coffee, and smoking you can quit too. And I smoked by the way, a pack to a pack and a half a day.

Let me know if the ginger candy helps?

Crossing my fingers you can quit...

[ronnieciao]

Hi there Michelle,

Wow, your story really resounded with me. It was like reading on my mother's experience word by word-she went through exactly the same symptoms at diagnosis, bloated abdomen, a burst ovarian cyst ( which then turned to out to be a peritoneal mass), feeling so bloated she could not eat... and even coffee had that same effect on her you described, one of the first things she noticed.

We also have cancer spread like wildfire in my family- my great grandmother, great-grandfather, grandmother and now mother had and have colon and rectal cancer, my 36 year-old cousin had ovarian cancer, my other great grandmother had breast cancer....and the list goes on... So, the genetic councillor was also convinced they'd find Lynch syndrome- but they didn't !

Of course every case it's different but I can pass on her experience so far hoping it might be useful to you. She was diagnosed with peritoneal carcinomatosis and liver mets on both lobes in my October 2014, with the primary tumour in the splenic flexure of the colon. The swelling on her abdomen was ascites, caused by a peritoneal mass. She had a 14 cm mass on the peritoneum above the ovary.
Her situation was deemed very bad, especially because the extent of her liver metastasis, and her ascites had to be drained several times, before Folfox started working- and it did! The ascites disappeared together with the 14 cm mass, it shrank to a few cm. There was never ever any talk of surgery for her, however they did decide to operate on her after 9 months removing the primary and sections of the omentum, and they could not see any trace of the peritoneal metastasis. One of her and ovaries looked affected however, so they removed both.

At the time we did enquirer about Hipec surgery. This might be the debulking that your doctor mentioned. It is a procedure carried out for those with peritoneal spread. It was not advised for my mother because of her liver involvement, however it is something you may want to ask about. Also we are in Europe and doctors tend to be less aggressive from the US, it seems.

At this point my mum is still doing well, responding to chemo, and we hope that she continues and that eventually the doctors decide to tackle the liver and the rest of the spots one bit at a time surgically. This has in nowhere been decided, but not excluded. In the meantime we all live as normally as possible.

In my humble opinion as a caregiver I think it's great that you have taken the approach to carry on with your life as normally as possible. Too much googling can drive you insane as I can testify from first hand experience, and anyway your case, and everyone else's, is unique. We all have different biologies and it's staggering how differently people react to the same treatments. This forum has been the best resource of support and knowledge for my mother and I.

My advice, again only as caregiver (and worth 0.02) would be to carry on as normal as possible, look after yourself and give the chemo a chance to work. In the meantime you might want to ask about Hipec. Also, do you know if they have carried out a kras-mutation test, to see if you are eligible to receive erbitux or vectibix?

That's all I can think of for now but please so get in touch if you have any questions.

I wish you all the best!

Veronica

[Lee]

Travel Girl,

Also – pre diagnosis I was a chain smoker – almost 2 packs a day. As I was lighting up a cigarette, someone in the family basically looked at me like I was crazy to still be smoking, and my sister in law (who is a CNA) told them “what’s is going to do to her now - she already has cancer?” We laughed at that one too.

I did end up quitting cold turkey on 10-26, for 6 weeks. Unfortunately I started back up again, and am trying really hard to kick the habit again.

As someone who was a smoker when diagnosed, quitting now may not be the best idea/time. When I was diagnosed, I asked if I should quit. Both my Onc and my surgeon said no, now is not the time. You are under a lot of stress right now and more than likely will set your self up to fail. You don't need that added stress. Butt ask your Dr what they recommend. My surgeon said just try and cut back a week prior to surgery.

On a positive side, following your surgery the best think you can do for yourself is walk, walk, walk. Guess what got me walking those first few days, that first cigarette. My husband or brother would walk with me out to the parking lot (smoking not permitted in hospital). After a while, I was walking on my own. I always told the nurse station where I was going. Because I was doing so much walking, they released me Friday night vs Saturday morn. Guess they thought, I might just walk home.

I was about 2 1/2 yrs out from diagnoses, when my Onc started asking me to quit. Took about a yrs, but I've a non smoker for almost 9 yrs now. Chantix is a wonder way to quit.

Sorry for the reason you both are here, but glad you found our forum. This site has a wealth of information and people who have been there and get what you are going through.

Lee

[mariane]

MIchelle,
I am sorry you have to deal with this disease.

My advise for you is that you have to be aggressive with your treatment. Seek the surgery if possible. Research HIPEC, please.
There is a possibility you are MSI - microsatellite unstable - in this case you could try pembrolizumab - immunotherapy which is a great hope for many.

Good Luck to you! Prayers,

[Dana123]

Michelle- the decision to not be told more about the stage and other information about your situation is an understandable choice some people make but as you've learned, there is a trade off as it affects your ability to consider fully possible next steps and options and our ability to give advice. I recommend you have your doctor give you a set of all your records to date and at each visit so you are prepared to seek a second opinion at some point. Trying to gather all that at a later point can be a challenge. Do you have a local friend or relative that can know the info and go to your appointments with you ? I know my husband isn't physically able to keep track of things and ask questions, so I serve that role. Of course, i know his information, as does he. We just don't spend time looking at survival rates, though I do research studies and treatments.

[O Stoma Mia]

There is a book that covers many of the issues that you have brought up. Here is the reference:

After Shock: What to Do If the Doctor Gives You -- Or Someone You Love -- a Devastating Diagnosis " by Jessie Gruman

http://www.amazon.com/AfterShock-You---Love---Devastating-Diagnosis/dp/0802715028/

In Chapter 2, "Get Acquainted with Your Disease and Its Treatment", the author spends 18 pages telling why it is so important to gather as much information as possible about
.

1. Your Diagnosis -- the details of your full diagnosis, and ...
2. Your Treatment Options -- the details of all the treatment options that are available for your particular diagnosis.

This information is needed in order to understand the situation and to guarantee that you are in fact getting the best treatment for your particular situation.

There is a steep learning curve in the first few weeks, because you will have to get up to speed on all of these new topics in a very short time frame. It is in your best interest to spend the time necessary to accomplish these two important tasks before the time when the doctors make the decisions about your final treatment plan.

ooooo