New Member, newly diagnosed

[hksvcap1]

Hi,

I’m new here. Biopsy of cecum mass came back as cancer on 12/31/19.

Many different emotions and thoughts. Mostly dumbfounded how I even got here. My hemoglobin was a bit low last spring. I saw my PCP as I had a gallbladder attack. Had an ultrasound, I had gallstones. Met with surgeon. Scheduled surgery for July but I ended up rescheduling for September as my schedule had gotten busy. My PCP told me to come back to have my CBC checked before surgery. Because of that I had a blood draw in early September.

My hemoglobin had dipped a bit, down to 10. In the meantime I was diagnosed with arthritis in my knee. Tried iron supplements but they caused constipation. I requested an endoscopy and colonoscopy. I was referred to a hematologist/oncologist for the iron deficient anemia.

The hematologist scheduled me for two iron infusions. He felt the anemia was pretty straight forward based on my labs. In the meantime my endoscopy came out fine and I was waiting for my colonoscopy appointment.

When I went for the first iron infusion I had a slight pain on my lower right. Didn’t think much of it. Had the infusion and had some side effects (headache for the evening, a few back spasms). In the meantime the lower right pain got worse and worse. It radiated up my side. Went back to PCP and he ordered a CT scan stat.

Had the first CT (abdominal/pelvic right lower quadrant) on October 30. Had occasional stomach cramps during that month. Once every couple weeks. Stool unchanged, no blood, no vomiting or nausea.

CT scan found diverticulitis, thickening in the colon wall. My PCP put me on a liquid diet for a few days, then soft diet and antibiotics for a week. The pain got a lot better. I just had a mild twinge or pulling sensation in a couple areas. Had a follow-up with my PCP, was told it takes awhile for diverticulitis pain to go away.

I had to reschedule my colonoscopy as I was told the diverticulitis would need to heal, about 4-6 weeks. Rescheduled it.

(I lost about 20-25 pounds from April to November).

In the meantime I went back for a second iron infusion and had a horrible reaction in the chair...shortness of breath, back spasm, I turned beat red. The infusion nurse flushed my line and gave me a steroid. (Had given me a steroid injection prior to the infusion too based on my previous reaction).

Two weeks later pain started coming back, not quite as bad as the first time. PCP sent me for another CT scan (same day). The inflammation was better but there was an abscess. They sent me directly to the hospital. The word mass hadn’t been said to me through any of this. Wasn’t in any report in my patient portal.

Ended up in hospital for 6 days on IV antibiotics. The radiographer at the hospital added an addendum to the November CT scan that findings were concerning for a mucinous tumor. A colonoscopy was recommended. (No kidding...had been trying to get that done). They drew blood to get my CEA level, it was 1.5, which I read was normal.

Half the doctors attending me were talking like it was no big deal basically, the other half made it sound dire. Went home from the hospital with a picc line to administer an antibiotic to myself once a day and on oral Flagyl. Did that for three weeks. Labs looked good...white blood cells came down, platelets were normal and my hemoglobin kept going up. It’s now 12.2 as of last week. Labs on my liver and kidneys were normal. The pain was 99% gone outside of a slight twinge a couple times a day. Was on my feet cooking Christmas dinner all day, felt good.

Met with the GI doctor’s PA on 12/13. She spent a lot of time with me and was very thorough. It sounded like they were leaning more toward a mass with some precancerous cells based on my scans and labs. The word perforation was typed on one of my discharge summaries. I asked, I was told there was no perforation. The GI doctor who attended me in the hospital is part of that practice, so they discussed my case. Told me to get in touch right away if pain came back after I finished the antibiotics. Colonoscopy was scheduled for 1/6.

The night of Dec 26th pain started coming back. They got me in for the colonoscopy on 12/30. The GI doctor called me on 12/31 and let me know cancerous cells were found in the biopsy.

Results haven’t come back from U of M hospital as to whether it is a mucinous tumor or not.

Saw my surgeon yesterday. He is concerned that it will be a mucinous tumor and said there was a perforation. Because of this I’m seeing a surgeon/oncologist next Friday to discuss heated chemotherapy during surgery and (I forget the term at the moment) burning most of my abdominal tissue off during surgery too. He only spent 10 minutes with me yesterday and only explained the heated chemo. Needless to say I was in a bit of a daze when I walked out.

Last night I remembered being told there was no perforation. I’m calling the GI office next week and meeting with the PA again to confirm this for me one way or the other.

Another CT scan is scheduled on 1/13 (abdomen/pelvis, and chest) to get an oncological work up to see if anything has spread.

And I’m still in pain. Which I tell all my providers. This is driving me crazy.

I feel like I did 9 rounds with a tornado through all of this. I just sit here sometimes and wonder how did this happen? I’m dumbfounded. I’m sad, then I want to punch a wall.

My daughter found this website and texted me the link. Apologies this is so long. I’m calm, but at the same time I’m reeling. I don’t know what this is, where I stand or what treatment will be best. Between the pain and all of that it’s been a rough week.

I just want this out of me.

Thank you for letting me vent. I appreciate it.

[Punky44]

Vent away! This is a great place for that and even more to get great information and great support. You will definitely feel more in control and less like a tornado once you have more info and a plan in place. Is your surgeon board certified in colorectal surgery? I think the term you might be talking about with the heated chemo is HIPEC, which I’ve seen discussed here.

[hksvcap1]

Vent away! This is a great place for that and even more to get great information and great support. You will definitely feel more in control and less like a tornado once you have more info and a plan in place. Is your surgeon board certified in colorectal surgery? I think the term you might be talking about with the heated chemo is HIPEC, which I’ve seen discussed here.

Thanks!! I’ll be checking to see if the surgeon is board certified in colorectal surgery. I appreciate the suggestion! I met with the general surgeon who has referred me to another. Based on the info he provides I’ll need to make the decision on my surgery and treatment. I need some facts first (including the decision regarding HIPEC...thanks for the term).

I’m thankful my daughter found this site. I appreciate any info or encouragement. I’m telling my mom about the diagnosis today. I’ve been dreading this all week. I know she can handle it, I just hate burdening her with the knowledge as I know she’ll worry.

My 17 year old twin girls have been amazing. They’re extremely positive and are helping me a lot. One of my daughters printed my medical files from my PCP’s portal and the hospital’s. Today she and I are categorizing the information we have and things I’d like to know.

I’m also going to make an appt with the hospital’s naturopathic doctor’s office to start learning what I can do leading up to surgery and treatment. I’m on didability leave from my job right now, so research and appointments are my new job at the moment.

I’ll feel a lot better when a surgery date’s been set and I can begin the journey forward. I feel out of control and in the dark. I don’t know stage or anything at this point. Just that it’s cancer and I’m in pain.

[boxhill]

Please don't apologize for long posts! No one is in a hurry, and the point is to communicate!

Sounds like you've been through the mill over the last few months. As Punky44 said, you will likely start feeling more in control and less whipsawed when you have more data--like more biopsy results--and a plan in place to at least begin dealing with this. HIPEC is indeed the name of the abdominal heated chemo treatment, BTW. It is often combined with cytoreduction, a procedure to remove as much malignancy as possible in the peritoneum. You might want to look both of those up so you have more information before your next appointment. Regarding perforation, it may well be that they can't be absolutely certain until you have surgery. Certainly you can't be reliably staged until then.

Are they talking about doing a right hemicolectomy, or another procedure? I've looked this up before, and it's not clear to me whether the hemicolectomy is standard for cecum cancer. Do not hesitate to ask about alternatives and ask for a second opinion before signing off on any plan of treatment

My advice is to do some reading so that you have a firmer grasp of what you team is talking about. It is my experience that the more evidence you give of having developed some understanding, the more information they will give you. Some people don't want to know: they just want the doctors to do what they think is best. And if that's what they want that's their choice. You don't sound like that type of person.

BTW, it sounds as if you have a very responsive PCP in your corner, and that can help a lot.

[Malidosa]

Hi there,

So it sounds like you and I are going through something very similar right now.

I started having off and on pain in my rectum for the last couple months so went to GI Dr received a colonoscopy only to be blindsided by finding out I had a mass in my cecum that was pronounced cancerous. I have no family history of this and I’m 35

I’m sure you know. But my emotions have ranged from I got this I’m ready to take the beast down to the darkest of darkest cave, the feeling of lose of control over my body.

I’ve stepped into a world that I feel so guilty now for being oblivious of all these years. The suffering and the emotions of the many individuals who have faced the same experience.

I met with my colorectal surgeon on Friday 1/3. And I can tell you just having the surgery scheduled feels like I gained even the smallest amount of control back. Surgery is 1/16 and honestly just counting down the days at this point.

I too won’t have full staging until it’s removed. And she suspects the pain in my rectum is from tiny cracked fissures and not related to the mass.

Please continue to provide updates on your status as I haven’t been able to find too many people who have had the cecum mass like me. There was one lady on here who’s husband had a cecum mass and he is 9 years cancer free. Just her messaging that helps so much. I’m so appreciative of the support and positivity on this board. I hope you find comfort in it as well.

[hksvcap1]

HIPEC is indeed the name of the abdominal heated chemo treatment, BTW. It is often combined with cytoreduction, a procedure to remove as much malignancy as possible in the peritoneum. You might want to look both of those up so you have more information before your next appointment. Regarding perforation, it may well be that they can't be absolutely certain until you have surgery. Certainly you can't be reliably staged until then.

Are they talking about doing a right hemicolectomy, or another procedure? I've looked this up before, and it's not clear to me whether the hemicolectomy is standard for cecum cancer. Do not hesitate to ask about alternatives and ask for a second opinion before signing off on any plan of treatment

My advice is to do some reading so that you have a firmer grasp of what you team is talking about. It is my experience that the more evidence you give of having developed some understanding, the more information they will give you. Some people don't want to know: they just want the doctors to do what they think is best. And if that's what they want that's their choice. You don't sound like that type of person.

BTW, it sounds as if you have a very responsive PCP in your corner, and that can help a lot.

Thanks for the info! I’ve looked up the procedures for understanding. I found that neither surgeon is a board certified colorectal surgeon...there are only 73 in my state. I did research on one in particular and am calling his office tomorrow. I need to have better understanding in order to make the right choices regarding surgery and treatment.

I was thinking of making an appt with my PCP to touch base too.

Yes, I’d be having a right hemicolectomy. I was told it would take 30-40% of my colon.

Thanks so much again...the support everyone here provides is invaluable.

[hksvcap1]

Hi there,

So it sounds like you and I are going through something very similar right now.

I started having off and on pain in my rectum for the last couple months so went to GI Dr received a colonoscopy only to be blindsided by finding out I had a mass in my cecum that was pronounced cancerous. I have no family history of this and I’m 35

I’m sure you know. But my emotions have ranged from I got this I’m ready to take the beast down to the darkest of darkest cave, the feeling of lose of control over my body.

I’ve stepped into a world that I feel so guilty now for being oblivious of all these years. The suffering and the emotions of the many individuals who have faced the same experience.

I met with my colorectal surgeon on Friday 1/3. And I can tell you just having the surgery scheduled feels like I gained even the smallest amount of control back. Surgery is 1/16 and honestly just counting down the days at this point.

I too won’t have full staging until it’s removed. And she suspects the pain in my rectum is from tiny cracked fissures and not related to the mass.

Please continue to provide updates on your status as I haven’t been able to find too many people who have had the cecum mass like me. There was one lady on here who’s husband had a cecum mass and he is 9 years cancer free. Just her messaging that helps so much. I’m so appreciative of the support and positivity on this board. I hope you find comfort in it as well.

Hi...I’m like you, no family history and I’m 49 so I hadn’t started having screening colonoscopies yet. I’m so glad your surgery is scheduled! Please keep me updated when you feel you can. I hope everything goes well!!

Yes, the support and encouragement on this board are amazing! I’m finding a great deal of comfort in it. I want to pay as much forward as I can throughout this journey.

I understand the rollercoaster of emotions. Now that my mom knows, I feel I can do research and schedule consults this week and very soon decisions can be made. Time is always of the essence, however I need to know a bit more before I make decisions.

[Vana3]

Hi,
This past June my doc found a Mass in the cecum during my colonoscopy, I was 4 months postpartum during that time. I just recently turned 37 years old.
I am so sorry you are both going through this.....
Looking back I wished the doc had done a pet scan first to figure whether surgery or chemo first is better. Whether surgery or chemo is better right away for right sided colon cancer seems undecided. You want to make sure you have a surgeon that can and plans on harvesting as many lymph nodes as possible especially when removing a right sided mass. Regular standard is 12 lymph nodes but gold standard is over 40-50+ if they can specifically for right side. I also had a surgeon with many hours of training in checking the entire abdomen for cancer before performing the actually surgery, which turned out to be a very good thing in my case.
There is also a drug that I think may be good to take before surgery called Cimetidine to assist with healing/fighting cancer while you are going thru a major surgery but we did not know about this at that time. Maybe another member knows more about this ?

Don’t be afraid to to breath, and wait to see a specialist in Colon oncology. A general community oncologist will not be as well versed in colon cancer.
My whole life changed the day I got the colonoscopy I can only imagine how you are feeling and am sending good thoughts.

[Beckster]

Welcome!

In October 2016, I was diagnosed with a cancerous cecum mass during my first colonoscopy screening. I had no symptoms and my blood work was pristine. With that said, I was in a fog for days....asking myself "How did this happen? I don't understand." After the biopsy confirmed the cancer, I met with a colon rectal surgeon who preformed a right sided resection. As you can see by my signature, I was stage 2A with LVI and a Grade 3 tumor. I am now over 3 years out and doing fine. The surgery was preformed laparoscopic and I was in the hospital for 2 days. I truly feel that picking the right surgeon is the most important part of your journey. If needed, get a second opinion. Maybe it is something new, but I never heard of the heated procedure you spoke about. Good Luck with your appointment and keep up posted.

Beckster

[hksvcap1]

Hi,
This past June my doc found a Mass in the cecum during my colonoscopy, I was 4 months postpartum during that time. I just recently turned 37 years old.
I am so sorry you are both going through this.....
Looking back I wished the doc had done a pet scan first to figure whether surgery or chemo first is better. Whether surgery or chemo is better right away for right sided colon cancer seems undecided. You want to make sure you have a surgeon that can and plans on harvesting as many lymph nodes as possible especially when removing a right sided mass. Regular standard is 12 lymph nodes but gold standard is over 40-50+ if they can specifically for right side. I also had a surgeon with many hours of training in checking the entire abdomen for cancer before performing the actually surgery, which turned out to be a very good thing in my case.
There is also a drug that I think may be good to take before surgery called Cimetidine to assist with healing/fighting cancer while you are going thru a major surgery but we did not know about this at that time. Maybe another member knows more about this ?

Don’t be afraid to to breath, and wait to see a specialist in Colon oncology. A general community oncologist will not be as well versed in colon cancer.
My whole life changed the day I got the colonoscopy I can only imagine how you are feeling and am sending good thoughts.

I’m so sorry you’ve had to go through this as well. And 4 months postpartum. Sending so many positive thoughts your way!!!

How are you doing now??

Thank you for this information. I’m making notes and going to call today to start lining up second opinions.

[hksvcap1]

Welcome!

In October 2016, I was diagnosed with a cancerous cecum mass during my first colonoscopy screening. I had no symptoms and my blood work was pristine. With that said, I was in a fog for days....asking myself "How did this happen? I don't understand." After the biopsy confirmed the cancer, I met with a colon rectal surgeon who preformed a right sided resection. As you can see by my signature, I was stage 2A with LVI and a Grade 3 tumor. I am now over 3 years out and doing fine. The surgery was preformed laparoscopic and I was in the hospital for 2 days. I truly feel that picking the right surgeon is the most important part of your journey. If needed, get a second opinion. Maybe it is something new, but I never heard of the heated procedure you spoke about. Good Luck with your appointment and keep up posted.

Beckster

I’m so glad you’re doing well Beckster! That’s fantastic!!

Part of me feels like I need to schedule this surgery asap (my illogical mind has moments where I picture the cancer growing and spreading rapidly every day) and my logical mind takes over and says back the truck up...you need more info before making such an important decision.

Needless to say I’m setting up more appointments with different providers this week.

Thanks for your reply. This board is an amazing community!

[Deb m]

My husbands tumor was also in his cecum . He underwent major surgery where they removed his entire cecum, his entire acceding colon , his appendix (because the tumor grew outwards towards his appendix and perforated the orifice of it), and 34 lymph nodes along with a lot of surrounding tissue. He was staged IIbT4a and had moderately differentiated cells and was positive for LVI. It was at high risk for re occurrence because of some of his features. He underwent 12 hits of folfox and he has been cancer free since 2011 thank God! The surgery, according to his docs at MDA was pretty standard for cancers found in the cecum is what we were told. He was in the hospital for about one week post surgery and within a months time was feeling pretty good. Chemo went ok. He had some minor complications, but we made it thru.

If you have any questions, don't hesitate to ask.

deb

[Supportivechild]

I quickly found this site for my mother as well but after talking to her I believe reading too much will give her anxiety. She was diagnosed on 12-13-19 with a rectal mass 5cm. I'm happy your daughter found this site for you.

[boxhill]

hksvcap1, FWIW I had a right hemicolectomy with many lymph nodes removed for biopsy (as you can see in my sig), along with sections of omentum and a little chunk of my liver. Cecum and appendix also, as is standard. My surgeon, who did an excellent job, especially in identifying my little liver met by feel and removing it when it did not show up on the pre-op CT scan, is NOT a board-certified colorectal surgeon. He is very experienced and has done many such surgeries, but in fact specializes in the liver, and does liver transplants as well as resections. Personally, I would be more concerned about finding a board-certified colorectal surgeon if I were looking at a tricky rectal surgery. But YMMV.

Because I had emergency surgery and they needed to take a good look around since the ability to examine everything really closely with full-contrast CT and MRI wasn't there, I had open surgery. Everything was fine, and I could not be happier with the results.

[hksvcap1]

hksvcap1, FWIW I had a right hemicolectomy with many lymph nodes removed for biopsy (as you can see in my sig), along with sections of omentum and a little chunk of my liver. Cecum and appendix also, as is standard. My surgeon, who did an excellent job, especially in identifying my little liver met by feel and removing it when it did not show up on the pre-op CT scan, is NOT a board-certified colorectal surgeon. He is very experienced and has done many such surgeries, but in fact specializes in the liver, and does liver transplants as well as resections. Personally, I would be more concerned about finding a board-certified colorectal surgeon if I were looking at a tricky rectal surgery. But YMMV.

Because I had emergency surgery and they needed to take a good look around since the ability to examine everything really closely with full-contrast CT and MRI wasn't there, I had open surgery. Everything was fine, and I could not be happier with the results.

I met with a colorectal surgeon yesterday who confirmed the surgeon I’m seeing Friday would be on the right path. Yesterday he went over all my scans and results. He spent a good deal of time filling in the gaps for my knowledge. I feel more prepared for the appointment now.

Feeling more nervous. I think the shock, sadness and anger are backing off and being nervous about upcoming surgery and treatment is taking its place. I just have to keep focused.

Thanks for sharing your positive experience and thoughts!! I’m glad everything worked out so well!