NEW-Need some positivity here.

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weisssoccermom
Posts: 5748
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: NEW-Need some positivity here.

Postby weisssoccermom » Sun Sep 10, 2017 1:03 pm

I have so many questions...If it is an old and large tumor is it a stage 4? Will Chemo make me lose my hair? Can I still work? How do I tell a 12 and 15 yr old that their mother has cancer? It's a disgusting place to be.

Tumor age and size has nothing to do with stage. Stage of cancer is determined by the following:
TNM
T = tumor depth....how far the tumor has invaded the colon/rectum wall
N = number of local nodes affected (not distant nodes)
M = number of mestasteses (both distant lymph nodes and/or tumors in other organs such as liver, lung, kidney, etc.)

Hair loss - generally NO to the following drugs: Xeloda(oral), 5FU (infused), oxaliplatin, Avastin, Erbitux
yes to: Irinotecan

MOST patients at least start with either one of the following:
5FU by itself
Xeloda (oral form of 5FU) by itself
XELOX (Xeloda + oxaliplatin)
FOLFOX (5FU + oxaliplatin)
XELOX + Avastin or Erbitux
FOLFOX + Avastin or Erbitux

Generally, patients (also some exceptions .....for example diabetes may preclude someone NOT using oxi and instead using erbitux) don't start with irinotecan. This drug is given with either 5FU or Xeloda

My point....don't worry about hair loss. There is generally some thinning with either Xeloda or 5FU but honestly, it's usually only YOU and your hairdresser who really notices.

Many people have continued to work during treatment. The one thing (IMO) that most cancer patients want is to BE NORMAL. If normal means working....then that's what they do. A lot will depend on the type of job you have. You may find that you need to take an extra break or two.....and as long as you communicate this with your job and talk with HR about this, they should accommodate you. It is required by law that a company make accommodations as long as those accommodations don't cause the company adverse consequences. In other words, an extra break or two....understanding that you may need to use the bathroom more frequently, etc. are reasonable accommodations. Asking your employer to allow you three 1 hour naps/day (hypothetical example) and every other day off are NOT reasonable accommodations.

As for telling your 12 and 15 year old....you tell them right now that the doctor found a tumor.....you know that it is cancerous but until you have the surgical pathology report you are really in limbo as to what it all means. You assure them that so far, everything looks good. You emphasize the positives (as positive as cancer can be) by assuring them that the CT scan showed that it had NOT spread.....that by all measures so far....everything looks to be contained to one area and that you are going to have surgery to have it removed. Don't lie to them....kids have other friends who have had family members with cancer and they may hear some awful stories from their peers. You don't want them to assume that YOU are going to be like their friend's relative/friend. Let them know that you are doing everything possible to get this out and kill this nasty tumor and that may likely mean you are going to have to have chemo for maybe six months. Make them aware that NOT ALL CHEMOS are the same. The stories that they've heard or the shows that they have seen are NOT necessarily the same as the chemo you will likely undergo. Most colorectal cancer patients don't end up looking like a holocaust survivor.....they work, they play and sure, there are times when they don't feel well (for me, that meant feeling like I was having yucky PMS/menstrual cramps) and that this, too, will pass. You and your kiddos need to know that the doctors have drugs to help combat the nausea (not everyone gets it) and that TOGETHER you will deal with this. Be realistic....your kiddos need to know that life will change....you will get more tired for parts of your treatment....and that you may need them to pitch in some. Maybe that means they need to help with throwing a load of laundry in or helping more with the dishes after dinner. Don't underestimate your kiddos....they are old enough to be doing a load of laundry, taking out the garbage and helping with other chores. Tell your 15 year old that you plan on teaching him/her to drive in a few short months (that was one thing that kept me normal....teaching my #4 how to drive just like I did the other 3 kids). Let them know that sometimes you will be tired and maybe they need to feed the pets or take them outside. They NEED to understand what is going on....don't tell them that everything is fine because honestly, even if the path report comes back as an early stage I, you're still going to be nervous and anxious for years to come and kiddos can sense that. Your 'NORMAL" is going to change....and they need to understand that as well. Maybe that means mom goes to bed earlier and wakes up later....especially on he weekend. They are old enough to know that mom can sleep in and they can make their own breakfast. It may not be what you want them to eat but it isn't going to hurt them to eat a bowl of cereal instead of some eggs. My youngest was only slightly past 15 when I was diagnosed.....he didn't care if the kids at school knew that mom had cancer but dang, there was NO way he wanted to tell them that I had RECTAL cancer......he just told them that I had colon cancer.....you're one step ahead on that front!! It's okay to joke about it.....don't be afraid that you are minimizing your disease.....you have to have a sense of humor about all of this. I know that this sounds macabre but it's reality. Still find the humor in your life....that isn't going away just because you have cancer. Share your goals with your kids....things like teaching them to drive, or being there for their first dance or watching them play in the state cup finals....whatever it is that is important to them.....make it important to you as well and vocalize that. Let your kids know that their future is YOUR future...its comforting for your kiddos to know that YOU plan on being around for a long long time (heck there's no guarantee in life cancer or not) and that you're still their mom. Its as much for you and your children to know that, as much as possible, you're going to try to keep things as 'normal' as possible BUT.....you have to relay to your kids that starting today, there is a NEW NORMAL in the house. That doesn't necessarily mean anything is awful or terrible.....just that things may change. As I said earlier, the new normal may only mean that your kids take on a few new chores in the house and give mom extra time for a nap. However you approach it, don't delay in telling them. YOU will feel better as will they. Kids, especially kids the ages of yours, are more perceptive than you think. They know something is wrong....they can sense it. Let them be there to help and comfort you as well as you comforting them. Together you will get through this....you're not alone.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

CAGirl
Posts: 6
Joined: Fri Aug 25, 2017 4:55 pm

Re: NEW-Need some positivity here.

Postby CAGirl » Sun Sep 10, 2017 1:19 pm

I felt the same way in mid-February of this year. Being a mother tends to shift your focus a bit. I was so sad about the possibility that they would be motherless. I remember the first weekend after my colonoscopy, I felt like I was caught in a big wave and couldn't get out. This forum seems to steer clear of religious and spiritual talk, so I hope I'm not violating anything by writing that what brought me out of my initial despair was Pema Chodron's When Things Fall Apart. I am in no way religious or self-helpy, but her writing made me realize that life is about groundlessness, not knowing what awaits and "leaning into" the experiences we are having -- not as interruptions of life but as life, itself.

I am having my FINAL chemo treatment on Tuesday (Thurs disconnect). It's been six months -- five of chemo -- and I am almost DONE! I never thought I would be here. Now, at first, my instincts pre-surgery were "Please, don't let me need chemo." I was staged 3C -- pathology showed spread to 8 out of 64 lymph nodes taken out, but CT showed no spread to organs. In retrospect, I am glad not to have had a "choice" about chemo (like earlier stages might). I have read on here about those that didn't do it and had recurrences years later. I do know that I could have one even with the chemo, but I am living in the NOW and -- like my onc -- assuming I am cancer-free. The surgery showed clear margins, my mid-way-through-chemo CT scan showed no changes in liver or lungs, and I've had 11/12 rounds of adjuvant chemo.

Also, remember -- for all the good people here who have stayed with the forum or checked back in to say they were NED and offer us all support and advice, there are also zillions out there who don't check in because they did their chemo, got rid of their cancer, are NED and just living their lives as survivors.

I second the sentiment about finding doctors you trust and feel good about. I left my first onc appt despondent because she was using an old chart -- with data dating back to the 70s, I think -- and told me there was a 30% chance I'd be alive in five years. Luckily, my dear friend is a pediatrician at the same facility and consulted an oncologist colleague who disagreed wholeheartedly with her whole approach to presentation, etc. I switched oncs immediately (to a third one at the facility), who said he had no idea why onc #1 had shown me that graph since so much has changed in testing and treatment. He and at the consulted onc put my survival rate at 80-85%. BUT, I'm sure most of us here would say to ignore statistics, anyway, because we are all individuals with various factors.

I do know of at least 3 people in my life who I have since discovered had colon cancer around 20 years ago and have been just fine ever since.

I also want to second that the chemo does seem more tolerable than others out there. It has been no picnic, but I got through it. And many out there did not even know I was going through it (daughter's preschool friends' parents), unless I told them. It was a relief to not noticeably lose hair (prob lost about 35% of it, but I had a lot to begin with) and have every other week be a "good" week, where I felt like I could function in the world.

Finally -- sorry so long -- I've had the luxury of doing things like sound therapy and yoga, AND my husband and I preemptively started seeing a therapist who has experience with couples going through cancer and also parenting issues. That has helped a lot. She told me if my girls (3 and 6) could get through this, they will be that much stronger and ahead of their peers in terms of coping skills and being able to deal with emotions. We have been age-appropriately sharing stuff with them: they ask to see my pump bottle to see if it's empty the day of my disconnect; know to watch out for Mama's port; and we created a lovely collage of a "Healing Tree" with 12 empty branches. Each cycle, we add leaves and other magical stickers -- birds, butterflies, flowers. It has filled out nicely -- and ONE LEFT! WOO HOO!

Good luck to you and, yes, once a plan is in place and things are less "unknown", you will feel better.
Diagnosed 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - diag in 1997; in remission w/low dose of anti-inflammatory, thus no colonoscopy in over 10 years
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
Started 12 cycles of Folfox 4/17, expecting to be done mid-Sept!

CAGirl
Posts: 6
Joined: Fri Aug 25, 2017 4:55 pm

Re: NEW-Need some positivity here.

Postby CAGirl » Sun Sep 10, 2017 1:27 pm

Sorry, didn't realize your kids were so "old."
I agree -- let them know not all cancers are the same, even though it's all the "C" word. Same for chemo treatments.
I plan to title this stage of my life "You Look Great!" based on how many times I've heard this from people who know...
And there are many, many survivors out there -- so it is certainly NOT a death sentence.
Diagnosed 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - diag in 1997; in remission w/low dose of anti-inflammatory, thus no colonoscopy in over 10 years
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
Started 12 cycles of Folfox 4/17, expecting to be done mid-Sept!

susie0915
Posts: 156
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Sep 10, 2017 2:18 pm

That is right. The staging depends on how far it has penetrated the colon wall, whether lymph nodes are affected, and whether or not it has spread to other organs. My stage was 2A, no lymph nodes affected, no other organs affected, but did penetrate through the rectal wall. It was only 2 cm, but my surgeon said it had probably been there 5 years. I had my baseline colonscopy five years before, he said either just beginning so wasn't visualized or started forming right after.

I did xeloda, which is the pill, with radiation, surgery, then 6 infusions along with xeloda after. I never lost my hair, and was told I probably wouldn't. People react differently. I didn't have many problems when I did the xeloda with radiation. More issues with radiation. The chemo after surgery was tougher. I experienced some diarrhea and fatigue. I think that was from the infusions. I would go every three weeks for an infusion, and take the pills for 2 weeks, then would have a week off. I did develop neuropathy in my feet and hands about a month after finishing. You see your oncologist every couple weeks during chemo, and based on your side effects dosage levels can be adjusted. Many people do work during treatments, maybe need to take a few days off here and there. I continued to work during radiation/chemo, but after surgery I never went back. That was my choice, and I did have a complication and had to return to the hospital 4 weeks after surgery.

A lot of your feelings are from fear of the unknown. Once you begin to meet with doctors and go over treatment options you will begin to feel more in control. When I met with the radiation oncologist, his first comment to me was "You know we are curing you." This made me feel better. Also, knowing exactly what the plan was helped me. Good Luck with your appointment with the surgeon. Make sure you write down every question you have. It's hard to remember when you're in the middle of the appointment and you are getting so much information. Also, the doctors will give you every side effect possible, just remember everyone is different and you most like won't experience them all. And again, nothing wrong with getting a second opinion. It will either confirm everything you've already been told or give you another treatment option, and you may prefer a different doctor.

But like I said earlier, the next few weeks will be a whirlwind having a lot of information thrown at you. If possible, maybe take someone with you. Just know there are a lot of people here to support you that have gone through everything you will be experiencing. Also many survivors at all stages that have been disease free for many years and doing well.

Praying for you. Keep us posted.
57 yr old mother of 3
5/15 DX T3N0MO Stage 2A
6/15 5 wks of radiation/xeloda
7/15 sigmoidoscopy/scar tissue only
8/15 Pet scan NED
9/15 LAR
10/15 Bowel blockage. 3 1/2 weeks in hospital.
early ileo rev since
surgery to repair blockage. c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nodule onc thinks scar tissue
7/17 no change lung nodule
Currently NED

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Sep 10, 2017 3:09 pm

I saw your comment on the 5 years post LAR about reading positive stories. Below is an on going thread that was started by Diane back in 2009. I'm not saying you are a stage III, butt hopefully you will find a lot of inspiration in some of what you read in the various posts. Yes, people do die from this cancer, butt believe me far more people are beating it or being treated as a long term chronic condition. I was diagnosed back in 2004, stage IIIC and I am very much alive and kicking today. Weisssoccermom is another long term survivor.

viewtopic.php?f=1&t=10574

In time you will come to understand there have been a lot of advancements in the last 2 decades, the bottom line, people are beating this cancer. Avoid Dr. Goggle as it tends to be out of date, or down right wrong at times. You will find a lot more up to date info on this forum.

The next new break through is with immunotherapies. This is the the next big game changer and a possible cure for cancer.

I know you are scared now, believe me, I've walked in your shoes (we all have). Butt know that once you are staged, have a plan of action, your life will start to feel normal again. Right now is the hardest part. Best advice I can give you right now, avoid Dr. Google, focus on positive threads especially around here. And rant, cry, vent, what ever will get you through the next few weeks HERE!

Remember you are not alone here.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

teacher2017
Posts: 20
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 10, 2017 5:26 pm

What does "infusion" mean? And what's a port? Is it painful?
48 year old female- mom of 2 (12,15)
DX colon cancer Sept 6,2017
Biopsy colon mass at 60cm
Infiltrating moderately differentiated colonic adenocarcinoma
Sigmoid/descending polyp- left side
Peritoneum & retro unremarkable
Ctscan says no spread but who knows!
Resection this Friday - Sept 22
Terrified

NHMike
Posts: 326
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Sun Sep 10, 2017 9:32 pm

teacher2017 wrote:What does "infusion" mean? And what's a port? Is it painful?


An infusion is where they use a pump to pump drugs into your body to fight your cancer. Infusions can run for quite some time (over a day in many cases). A common chemo drug is 5 FU and you carry around a pump with you for over a day with it pumping it (and sometimes other drugs) into your body. There is also an oral form called Xeloda which is what I took for my pre-surgical chemo. Post surgical chemo for me will likely be Xeloda (oral chemo) and infused Oxiliplaten which I think is two hours or so. So I would go into an infusion center, sit down and they'd pump the stuff into me.

The port is something that they surgically implant into your chest (I think) so that they can do the infusion. I don't know if it hurts as I haven't had it done yet.
Mike in NH:
Rectal Bleeding biopsy June 23, 2017, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Chemo (Xeloda) and radiation from 07/31/17 to 09/08/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9 to 1.8 after treatment.
KRAS Mutant KRAS p.Gly12Asp

CAGirl
Posts: 6
Joined: Fri Aug 25, 2017 4:55 pm

Re: NEW-Need some positivity here.

Postby CAGirl » Sun Sep 10, 2017 10:33 pm

The port now looks like a little bump in my chest, and there's a tube attached under the skin that... goes into a vein in the neck? That's my laywoman's explanation. I go in on a Monday for my infusion of Oxaliplatin and Leucovorin (first is a chemo drug; second is like vitamins to help you absorb the chemo drugs). They attach the IV directly into your port, and it doesn't really hurt. After 2.5 or so hours, it's done, and they "flush" it ('cause the 2 chemo drugs are not compatible) and attach the bottle (in a fanny pack, about the size of a baby bottle) and needle into port, with tubes taped to my chest. Its annoying and after 46 hours (but really fewer: it's always empty when I wake up on the Wed morn), I cannot wait to get it disconnected. That would be a 15 minute process, but I always get hydration when I'm there (IV fluids in the port), to help with nausea and fatigue. That second chemo drug, btw, is 5-FU. That, with the other two, is what's called "Folfox".

You should know I'm a very squeamish and medical-procedure averse person, but this has been very manageable. I really thought I would want pill form (Xeloda), but my onc said the side effects would be worse for me (Hand-Foot Syndrome... I have chemo brain; I think that's what it's called) and diarrhea, which, with my history of Crohn's disease, would not be good for my colon.

I embrace my port now. Am glad I have it, as each time I go for the blood draw (day before each infusion), I get pricked in my arm, and am glad they are not messing with my veins even more. Getting it put in is a simple procedure. Not great for me, though, because the drugs they gave me made me vomit quite a bit (Versed and Fentanyl.) Will ask for others when I get it removed (SOON!)
Diagnosed 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - diag in 1997; in remission w/low dose of anti-inflammatory, thus no colonoscopy in over 10 years
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
Started 12 cycles of Folfox 4/17, expecting to be done mid-Sept!

susie0915
Posts: 156
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Mon Sep 11, 2017 9:14 am

A lot of people do the port. I had my infusions done through an IV. I only had six every three weeks, so the doctor said I could try without the port. The port makes things much easier as there are no issues getting the vein for the IV. Plus, they can do your bloodwork through the port. It does save your veins and makes things much easier, especially if your are going more often for chemo. I'm not sure what the protocol for other chemo drugs are for sure. Mine was every three weeks. Have an IV infusion, and take pills for two weeks, then one week off. Also, you can get dehydrated so being able to find a vein to take can be difficult. There were a couple times it took a couple tries or another nurse to be able to get the IV completed.
So the port can be bery beneficial.
57 yr old mother of 3
5/15 DX T3N0MO Stage 2A
6/15 5 wks of radiation/xeloda
7/15 sigmoidoscopy/scar tissue only
8/15 Pet scan NED
9/15 LAR
10/15 Bowel blockage. 3 1/2 weeks in hospital.
early ileo rev since
surgery to repair blockage. c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nodule onc thinks scar tissue
7/17 no change lung nodule
Currently NED

ValZen
Posts: 13
Joined: Fri Sep 08, 2017 8:16 am

Re: NEW-Need some positivity here.

Postby ValZen » Mon Sep 11, 2017 10:19 am

I can relate to the googling too...I had to stop! My husband could tell I was googling info. just by the "deer in headlights" look on my face! I'd be looking at statistics that were over 10 years old...Stage IV means (from what I know...) that there is spread beyond the region of the original tumour - whether that be to another distant lymph node or organ. You, thankfully, don't have that. :) I know this must be a very scary time. I can relate 100%. I hope once you talk to your care team and are able to have all of your questions answered - you'll feel more comforted and reassured. Take good care and please keep us updated!

teacher2017
Posts: 20
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Sep 11, 2017 12:04 pm

So you said that I could vent. Can there be some urgency about this? I need to talk to someone about treatment. I don't want this to spread and it could be doing it as I type! People need to call me back and really it's all about the mighty dollar. One dr at Columbia Pres who is the head of colorectal surgery doesn't take my insurance. I have no other names. I think I may want to go to Sloan. But I don't know who takes my plan. Wtf?!!!! Any dr at Sloan take the Empire Plan?
Last edited by teacher2017 on Mon Sep 11, 2017 12:36 pm, edited 1 time in total.
48 year old female- mom of 2 (12,15)
DX colon cancer Sept 6,2017
Biopsy colon mass at 60cm
Infiltrating moderately differentiated colonic adenocarcinoma
Sigmoid/descending polyp- left side
Peritoneum & retro unremarkable
Ctscan says no spread but who knows!
Resection this Friday - Sept 22
Terrified

veckon
Posts: 84
Joined: Thu Jul 27, 2017 7:44 am

Re: NEW-Need some positivity here.

Postby veckon » Mon Sep 11, 2017 12:17 pm

Where do you live? If around New York, memorial Sloan Kettering is good. They accept most insurance. If not, call anyway and see if they can figure out how to help you. This step may take patience.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Aqx99
Posts: 116
Joined: Fri Mar 31, 2017 7:28 am
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Mon Sep 11, 2017 3:42 pm

I know most people on here suggest going to one of the big name cancer centers, but I prefer a smaller local one. I feel you get more personalized care at a local cancer center, because they do not have such a huge influx of people from all over the country. They all follow the standard of care based on the specifics of your tumor.

My tumor was found on a Tuesday, the pathology came back Wednesday, on Thursday I was in to see a board certified colorectal surgeon. The following Monday I had my endorectal ultrasound and CT scans of my chest, abdomen and pelvis done. Within a week of that I had been seen by my medical oncologist and radiation oncologist, and was in the planning process for radiation treatments. I don't think my treatment plan could have come together any quicker.

Of course you can always get a second opinion if you don't like what you hear at the local cancer center, but for the most part they all start the treatment the same way, based on the tried and true methods that have been created through years of experience. If the need should arise for some sort of special or advanced treatment, my cancer center gladly encourages their patients to work with an outside oncologist. They then coordinate with the outside oncologist to treat the patient locally, instead of the patient having to travel to wherever that oncologist is located.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

teacher2017
Posts: 20
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Sep 12, 2017 6:24 am

Ok I have two appts today to speak to two surgeons. One at Sloan and one at Columbia Pres. Not sure what I'll do. Sloan will use my insurance but the GI dr really wants me to go to Columbia pres. I will keep you posted. PRAY.
48 year old female- mom of 2 (12,15)
DX colon cancer Sept 6,2017
Biopsy colon mass at 60cm
Infiltrating moderately differentiated colonic adenocarcinoma
Sigmoid/descending polyp- left side
Peritoneum & retro unremarkable
Ctscan says no spread but who knows!
Resection this Friday - Sept 22
Terrified

NHMike
Posts: 326
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Tue Sep 12, 2017 6:31 am

Aqx99 wrote:I know most people on here suggest going to one of the big name cancer centers, but I prefer a smaller local one. I feel you get more personalized care at a local cancer center, because they do not have such a huge influx of people from all over the country. They all follow the standard of care based on the specifics of your tumor.

My tumor was found on a Tuesday, the pathology came back Wednesday, on Thursday I was in to see a board certified colorectal surgeon. The following Monday I had my endorectal ultrasound and CT scans of my chest, abdomen and pelvis done. Within a week of that I had been seen by my medical oncologist and radiation oncologist, and was in the planning process for radiation treatments. I don't think my treatment plan could have come together any quicker.

Of course you can always get a second opinion if you don't like what you hear at the local cancer center, but for the most part they all start the treatment the same way, based on the tried and true methods that have been created through years of experience. If the need should arise for some sort of special or advanced treatment, my cancer center gladly encourages their patients to work with an outside oncologist. They then coordinate with the outside oncologist to treat the patient locally, instead of the patient having to travel to wherever that oncologist is located.


I agree that you can often get things done faster at a local place but your selection of doctors may be less than what's available at a large center.

I'm getting the local work done at a large hospital group in my state. I checked their oncologists and none are specialists. I don't think that there are any colorectal surgeon specialists either (not even sure that there are any in my state). A lot depends on the quality of services locally and how far away you are from a cancer center and how tricky your care might be. In my case, I used the locals for Oncology and Radiology, and will use a cancer center for surgery. I got second opinions from the big place for the first two. So you can mix and match as well.
Mike in NH:
Rectal Bleeding biopsy June 23, 2017, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Chemo (Xeloda) and radiation from 07/31/17 to 09/08/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9 to 1.8 after treatment.
KRAS Mutant KRAS p.Gly12Asp


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