Should I start Chemo immediately?

Posted by willy1273 @willy1273, Sep 13, 2023

Hi Guys,

My story, Im a 50 yo male, late last summer I started to become very fatigued and began losing weight and muscle mass rapidly (overall i lost almost 80 lbs in about 6 months) and had difficulty eating so much so that even though I may not have eaten in a day or 2 I always felt completely full and had trouble even forcing myself to eat. I was originally diagnosed with Pancreatic Enzyme Deficiency (PED) and given pills to eat with each meal to help with digestion. This helped a bit with allowing me to eat but I still continued to lose weight and had diareha constantly.
Soon there after in the fall after a CT scan of my abdomen they found a large tumor (10 inches in fact) in my lower colon. After running into issues (blood clots) and having my surgery pushed back they eventually removed the tumor in January of 03. After the surgery I was given the great news that everything had gone great and it had not spread to my lymph nodes or anywhere else. I was told that I was considered low risk stage 2 and had a 90+% chance that it would not return.
After the surgery everything seemed to be going great, my appetite returned immediately, most of my weight came back very quickly and my strength gradually returned as well. After about 3 months I was able to return to all normal activities. Over the next 3 months I got stronger and felt terrific.
At my 6 month check up I was expecting to get the clean bill of health as everything had gone so well and I felt so good, however there were some markers in my blood test and they wanted to send me in for a scan and colonoscopy. What they found was that not only had the tumor returned but had already spread to my colon (over 20 small spots) and one spot on my lung.
Talk about a kick to the gut. The first tumor had to be in me for years to get that large and didnt spread at all and now in a matter of a few months, after getting the all clear, this one had already spread.
In discussing it with my doctor he wanted me to get into chemo as soon as possible and my first reaction was yes, lets get into it and beat this thing again, so much so that I was pretty upset that we couldnt get started for 2 weeks.
This past monday I had my initial meeting with my oncologist to go over how we were going to proceed. In my head that meant maybe a few months of chemo and then we get in there and get rid of the tumors. But what the meeting was about, at least in my mind, wasnt "beating" it but trying to live with it as long as possible.
I had my port put in today and scheduled for my first treatment monday BUT this is where I began thinking, if were not trying to beat it and I actually feel terrific right now, why would I start doing this on monday knowing that I am going to feel aweful for basically the rest of my life starting then?? Should I not wait until I start to feel bad first and enjoy what might be the last time I feel this good?? Im not saying do no treatment ever, maybe just not right now knowing that it may cut my time shorter in the end but that time at the end seems awful, do I trade that for a few months of feeling as good as I do right now?
Im really looking for people going through this right now or maybe who have gone through it and come out the other side and ask them if they would have considered it and done it if they had it to do again?
It just all looks so bleak, why should I start that bleakness earlier than necessary.
I appreciate any and all feedback

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Hi,

I get it! I'm kinda in the same boat (living with cancer). And that is what I am doing. Living!
There are different combos of treatment that can help and have limited side effects. I'm personally a fan (if one can be) of Avastin and Keytruda. Please talk to a few different oncologists and tell them what is most important to you. I recently had an HAI liver pump put in, but my body rejected it so I'm back to regular treatments. I'm very active and I work full time (remote). Be open, but be your own advocate for options.

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I had a tumor and 26 lymph nodes removed from my sigmoid colon in April. Chemo for 8 rounds which just ended last week. I feel your anguish.
I would definitely get a second opinion from another oncologist. I would also talk to the surgeon who removed the tumor and ask their opinion.
Hopefully you’ll get more/better advice from other survivors. Stay positive and never stop advocating for yourself!

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Cancer is a strange beast. And what's even more weird, is even your oncologist doesn't really know what's coming for you. And this is simply because there are statistics that apply to many tens of thousands of us... and then there's YOU! And believe me, your oncologist knows what is typical, and will advise you thusly... but he has zero clue how YOU and your cancer will respond to treatments. None. But he will find out (as will you) as you do your treatments... and follow up scans and scopes and blood tests are done.

Now I don't know your cancer very well, I do know mine (esophageal cancer) pretty darn well, so I have no clue how quickly your cancer will progress and eventually kill you. But I'm fairly confident it will... cancer has a great batting average. Now maybe, if you do nothing, you'll live 6 months... maybe 6 years, I just don't know. And I know you're talking QofLife here, and I'm not sure how to address that... because you can surely suffer both ways... thru the misery of chemo treatments... or the misery of the pains you'll feel down below... monster weight loss... and now with this metastasis... much faster spread (I've seen this often... when it comes back, it does so with a vengeance... so don't expect it to grow slowly like your original tumor did!).

Ok... again, not my place to tell you what to do. But, if you want to have a chance at living longer, maybe much improved QofLife (even if these treatments don't completely eradicate these tumors... but just stop them dead in their tracks)... and maybe even getting rid of them completely... you do your treatments. If after X amount of treatments you don't want to do any more, no one forces you to go on... just stop. But you do some, and then they will scan again, and everyone will know what progress is being seen... and go from there. And, is immunotherapy a possibility as well?

All the best.

Gary

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I also suggest getting a second opinion from another Oncologist and if possible, talk to the surgeon that removed your tumor. I am happy with the treatment I received, Chemo, Radiation, and then operation to remove the part of my rectal cancer as well as the surrounding Lymph nodes. Everyone is different and every case of cancer is different. You do have to be your own advocate as well. Do what you are comfortable with. Do you have a spouse to talk it over with? Also, I would think there is a person you could speak with at the Oncologist's office or hospital etc. Keep up with your prayers too if you are so inclined. I was and and happy I did.

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With metastasis (in your case to lung) I’ve heard things like 3 years with treatment and without a much lower expectancy. If you choose not to treat it might be wise if your expectancy is around 6mos or less to ensure you get signed up with hospice because they are all about ensuring your comfort and quality of life.

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Of course that is just an avg ballpark and you may not fall into that category. I’ve heard of very unusual cases with metastasis living 10 plus years (with treatment).

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Given that you have active malignancies and that spot in your lung, my thinking is to do the chemo based on my experience also that time is critical.

I'm not a doctor, but I find it unusual for them to do chemo before a second surgery to remove the new malignancies in the colon.

I had colon cancer diagnosed in Jan 21, followed by removal of the colon and 108 lymph nodes - Stage 3C. Even though surgery thought they got it all, Oncology recommended 12 cycles of FOLFOX6 chemo at 2 week intervals. Rest periods were allowed when the chemo got to be too much to handle and they also adjusted the chemo because of undesirable side effects. Also did CT scans every 3 months - numerous suspicious and unidentifiable things were found from kidney cysts, liver cysts, thyroid nodules, a bunch of spots in my lungs and a spot near where the surgeons attached my small intestine to my rectum. None of the spots were thought to be cancerous, but the scans and bloodwork were done to monitor them - if they grew, they were likely cancer.

The spots except one have been stable since 2021, thus they are not cancer. I have no new spots. But I have have one spot that 4.5 months ago showed growth per the scan, my last scan 2 weeks ago showed it hasn't grown more.

I have commented here about my experiences with chemo in other discussions in the colorectal section which you may find helpful.

All the best to you.

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I was stage 4 with sigmoid colon cancer that had metastasized to one lymph node and the very bottom of my right lung.
I had the colon resection surgery and only 7 weeks later the lung wedge resection.
Today is my 15 month anniversary of the colon surgery.
Other than diarrhea for almost exactly a year, I have been fortunate to not have any other issues related to either surgery.
The interesting thing to me after reading hundreds of posts here, has been the incidence of so many having chemo prior to surgery.
The explanations seem to adhere to a theory of attempting to shrink or reduce the size of a tumor before surgery.
In my case, neither of my surgeons ever mentioned chemo to me ever. We went straight to surgery in both cases without any problems during or now 15 months later.
Much after, I did ask about those doctors who insist on "chemo first-surgery later" and it seemed to be a doctors personal preference rather than medical theory.
So I was side-stepping chemo from the very beginning and refused chemo after each surgery.
I opted for scans and blood tests every 4 months. After 4 such testing occasions, all is so far 100% good!
I am always reluctant to recommend my choices to others. I am aware every day that I am gambling and cancer is more likely to return than not.
It is also unusual to find someone who was stage 4 with two major organs involved to have never had chemo and radiation.
I am perfectly willing to see this through, regardless of how it may turn out because - 1) I am a risk taker by nature, and - 2) I am having a quality of life very much like the previous 70 years before all of this happened.
It is without question that I could not say that had I chose chemo and/or radiation 15 months ago.
I did take the opportunity to speak with two Oncologists for fact finding before making my decision. They were the only medical professionals that I have ever spoken to that admit to making recommendations based on how others have responded. Such recommendations are only a "guess" before seeing how you may respond to treatment.
Depending on your severity of side effects, the guessing game will likely be continued again and again. That doesn't register in my way of thinking.
I choose quality of life until there is a reason not to.
But thats just me.
Everyone will ultimately have a personal decision to make one day. Make it your best decision!!
Paul

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@paul28

I was stage 4 with sigmoid colon cancer that had metastasized to one lymph node and the very bottom of my right lung.
I had the colon resection surgery and only 7 weeks later the lung wedge resection.
Today is my 15 month anniversary of the colon surgery.
Other than diarrhea for almost exactly a year, I have been fortunate to not have any other issues related to either surgery.
The interesting thing to me after reading hundreds of posts here, has been the incidence of so many having chemo prior to surgery.
The explanations seem to adhere to a theory of attempting to shrink or reduce the size of a tumor before surgery.
In my case, neither of my surgeons ever mentioned chemo to me ever. We went straight to surgery in both cases without any problems during or now 15 months later.
Much after, I did ask about those doctors who insist on "chemo first-surgery later" and it seemed to be a doctors personal preference rather than medical theory.
So I was side-stepping chemo from the very beginning and refused chemo after each surgery.
I opted for scans and blood tests every 4 months. After 4 such testing occasions, all is so far 100% good!
I am always reluctant to recommend my choices to others. I am aware every day that I am gambling and cancer is more likely to return than not.
It is also unusual to find someone who was stage 4 with two major organs involved to have never had chemo and radiation.
I am perfectly willing to see this through, regardless of how it may turn out because - 1) I am a risk taker by nature, and - 2) I am having a quality of life very much like the previous 70 years before all of this happened.
It is without question that I could not say that had I chose chemo and/or radiation 15 months ago.
I did take the opportunity to speak with two Oncologists for fact finding before making my decision. They were the only medical professionals that I have ever spoken to that admit to making recommendations based on how others have responded. Such recommendations are only a "guess" before seeing how you may respond to treatment.
Depending on your severity of side effects, the guessing game will likely be continued again and again. That doesn't register in my way of thinking.
I choose quality of life until there is a reason not to.
But thats just me.
Everyone will ultimately have a personal decision to make one day. Make it your best decision!!
Paul

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In my case, I saw two Oncologists at two different hospitals and they both had the same course of treatment and that was chemo, radiation, and then surgery. Both teams said they used to do the surgery first but found that doing the chemo first, sometimes the tumor shrinks enough that surgery might not be needed. They said 1 out of 7 won't need the surgery. I was hopeful to not need to have the surgery and during my chemo treatments, the tumor got smaller. In fact, the Oncologist said the scans show almost nothing and if they didn't know I had rectal cancer, they wouldn't be able to see it. Well, after the radiation treatment, 3 months later, the tumor started growing again and it was decided to have the surgery. The lymph nodes were also removed along with aprox. 11" of my rectum. I believe the chemo did help me because it did shrink the cancerous portion and possibly less of my rectum had to be removed. I don't know for sure because I'm not an expert in the medical field. I have to put my trust in the doctors that took care of me. I also prayed a lot. 🙂

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@willy1273, I thought I’d check in to see what you decided. As others have said, it’s a personal decision. Many have shared their choices and the criteria they used to make their decision. I look forward to hearing back from you and your planned course of action. How are you doing?

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