Doc says chemo not needed

alicefive834

I was diagnosed with Level 2 colon cancer. The tumor was large but was contained and had not spread outside my large colon. However, it was blocking more than 2/3 of my colon so I had a partial colectomy within two weeks. It was done via robotic laparoscopic surgery. They removed about a foot of my colon and 22 lymph nodes. All of the lymph nodes were clear. All the scans were also clear and the cancer hadn’t spread anywhere else. I saw my oncologist for the first time about a month after my surgery. He said everything looked great and I wouldn’t need chemo as “we don’t do chemo for your stage of cancer.” But I can’t help but worry. I have read that some people do have chemo as “just in case insurance” Can anyone that had a similar diagnosis give an opinion?

sgold88

Your diagnosis sounds great. It’s likely that you can carry on now and that event was possibly just a speed bump in life.

Following my wife’s more advanced surgery, which resulted in clear scans as well, the answer to chemo was “what are we chemo-ing? There’s nothing to chemo”. You’re likely worried about microscopic cancer that can’t be seen but the oncologists know what works and what doesn’t. It sounds like the oncologists feel that statistically you won’t relapse or more likely that chemo, if administered, will have no effect on long term survival one way or another, so why bother given the side effects. Chemo works less than 30% of the time at best in any scenario, so why give it if there’s nothing obvious to administer chemo to the first place.

Enjoy your new lease on life!

SandiaBuddy

Chemo is hell. It sounds like you are getting sound medical advice. If you feel the need to take action to optimize your odds of avoiding a recurrence, take a look at some of the non-chemo alternatives, like taking cimetidine, having an optimal vitamin d level, exercising regularly and eating well. There are hundreds of little steps you can take like eating tree nuts, drinking milk, drinking coffee, taking various supplements, and more. It is understandable that you want to do your best, but sometimes chemo is a two-edged sword. Plus, if your doctor is not authorizing it, it probably is not an option.

Canadian Sandy

I was in the same position in 2016. My choice was to take the chemo pill for 3 months. It seemed to agree with me but some find it has bad side effects. I have not had cancer return for 7 years until a week ago was diagnosed with uterine cancer. The pill is called capecetibine (spelling) in canada. I think in the us it’s called Xelox. Good luck.

alicefive834

https://csn.cancer.org/discussion/comment/1704797#Comment_1704797

I am sorry you were diagnosed with cancer again. I am sending good thoughts your way that you will beat it.

Erica2016

I Alice ask your doctor about the blood test Guardant it detects any floating cells in your blood . There is another one that tests your tumor cells and blood but called sygnatera. It really is just one more data sample to have in your decision making . I was also stage 2A and decided on chemo , but mine did return . Everyone is different . I wish you well

Canadian Sandy

https://csn.cancer.org/discussion/comment/1704799#Comment_1704799

Thank you Alice I need lots of good thoughts. It’s hard…..especially when you’ve been Ned for such a long time.

beaumontdave

Hi, I had over 6 inches collected at the sigmoid section with 2 of 17 nodes being involved. That made me a 3b and a full 12 rounds of Folfox followed. I was at the milder end of the side effect spectrum, but the issues were still a hassle, and some like nerve function in hands and feet, lasted nearly 2 years, as far as I can tell. Within 2 years, my CEA had risen past being the things we all hope it could be, and I had 3 mets in different sections of my liver. Eventually they were cut out, along with another 2+ years beyond that. The point is, the front-line chemo, fully given didn't stop the recurrence. The added advantage is surprisingly small when you read it as a percentage. They'll be watching you close, push for any tests that may help flag a met early, and be at peace,[as best you can] that they got it earlier than many who land here. If it goes well, and you don't ever have to have chemo, it's one more blessing to celebrate..................................Dave

NewHere

https://csn.cancer.org/discussion/326393/doc-says-chemo-not-needed

My diagnosis was a higher Stage than yours, BUT I was told before my that it looked like it was Stage II, in which case in all likelihood I would not need chemo - that generally Stage I or II does not warrant mop-up chemo. One doctor said sometimes early Stage III did not require chemo, though I am not sure about that advice.

It sounds like you had successful surgery and things are generally good - I had 21 or 22 lymph nodes removed and 1/2 of them were cancerous. (It turns out my cancer was very aggressive - I had a CT scan about 2 weeks before my surgery and the surgeon could not believe how much was in there when I had the surgery.)

I have had many different chemos and now in my fourth drug trial. This fourth drug trial is working. What I will say is that it seems more things are coming out to help people. This drug trial, compared to what FOLFOX, FOLFORI and LONSURF did to me, is absolutely nothing for the most part. Since being on the drug trial, and how relatively easy it has been compared to surgery and chemo, I get some solace that people in the not too distant future will have options with new drugs being developed which are a lot easier to deal with.

As others have mentioned, the percentage of help (prevention) of chemo is not as high as one would think.

Have you had a PET Scan yet? You can ask for one. Basically you drink radioactive sugar that cancer cells uptake more than non-cancerous cells and it can ID cancer that is elsewhere. I would also look to get a second and third opinion from medical professionals. grandrounds.com offers these services. I used it for a second opinion on something related to my cancer. It was easy. They do all the work in gathering the documents. There are many great cancer hospitals on their list.

If I had a clean PET scan, clean margins, a good second opinion confirmed chemo is not needed, and based on dealing with chemo and the percentage of prevention compared to the effects, I would lean towards just being carefully monitored.

One last bit of advice, do not rush to get on chemo right away if that is the way you are leaning. You can arrange to get a PET scan and a second opinion rather quickly and the relative delay of starting chemo (if that is your choice) a week or two really would not change things much.

Good luck.