My sidetrip to Colorectal Cancer and a Reminder

oldbeauty

I'm now 3 weeks post-op from a right hemi-colectomy (resection of terminal ileum, cecum (with appendix) and ascending colon). At age 70, the surgery did knock me out, and fatigue is still an issue. The incisional pain is minor but I have thick scar tissue bisecting my navel (I think he must have ended up with an open approach) that I want to address. But all in all I'm doing well. The final dx is Stage II, Grade 2 adenocarcinoma. There was no spread to the 41 LNs resected, and no evidence of disease visually in surrounding organs, (So, that's T3N0). Only LVSI to small vessel vasculature, no large vessels. The genomic testing they do in-house showed MSI-high and BRAF mutations, each of which arose in the tumor itself. I will be referred on to the gastro/geneticist for further evaluation, and to a medical oncologist to review the current approach to adjuvant therapy for Stage II disease (there's no consensus for Stage II; the best I've seen in recent articles say the benefit in OS and DFS is less than 5%). Ironically, the MSI-high (aka dMMR) mutation (and the BRAF too, I think) translates to a better prognosis in Stage II. I hope I can get the geneticist to agree that further genomic testing is appropriate. The kicker is they found early cancer in my appendix also. 😲 Once my body settles down from the effects of surgery and meds they pumped in me in the hospital, we will be starting over crafting a strategy of watchful waiting and diet/nutrition counseling. Compared to the years and years of constant anxiety following my first UC recurrence (I've had 3 so far), I'm reasonably good mentally. I am 70, and heading naturally into my slow-go years anyway. Quality, not quantity, of life is now paramount, and my darling hubby and I will forge ahead to have as much fun as possible. Unless someone convinces me it is critical, I don't plan to accept chemo...certainly not any more platin drugs given the state of my neuropathy.

What I find instructive is that all along this diarrhea that I've had was the warning my body was sending me that something was seriously amiss. I've always marveled that my body sent me clues relative to my UC. First, it was post-menopausal spotting; second, it was increasing right-side lower extremity pain; third, it was an unexplained passing of copious blood in urine; the fourth time, we were monitoring post-chemo with CTs anyway and just followed the growing tumor in my left lung.

The knee-jerk response to my complaint about diarrhea was, "It's the Metformin." I never bought that. In fact, diarrhea was a complaint at my colonoscopy 5 years ago but nothing was found. Clearly, I should have had a follow up colonoscopy sooner than 5 years when they could have found it at Stage I and the surgery would almost certainly have been curative. The surgeon urged me to regard myself as "cured." He did not believe getting second opinions would change either dx or tx, or provide any clues to causation (he said likely the science isn't there yet; maybe in 20-25 years I could be found to be one of those with an as yet undefined "syndrome" like Lynch). MDAnderson, MSK, and Mayo are all possibilities for second opinions.

So, trust your bodies, ladies, and be a fierce advocate for your well-being. Push your insurance as far as it will go. For uterine cancer, this site, I think, is unmatched in providing support and useful information in easily understandable language for the worried and newly diagnosed to build the toolbox they will need to fight for their health. I remain very grateful to the ladies here.

Happy Valentine's Day, and best wishes to all, Oldbeauty

Forherself

Dear Oldbeauty, thank you for sharing your story. You have a lot of good advice here. I'm so sorry you are having to deal with this bowel cancer. It always makes you wonder if there is a link between the two. As you mention, years from now the answers will probably come. And today we fight. You are in my prayers.

MoeKay

Hi Oldbeauty, it's good to hear that you are doing well after surgery. Hopefully the fatigue will be a thing of the past very soon. Will they be monitoring you with regular CEA blood tests? I know a friend of mine who was diagnosed with stage 3 colorectal cancer the same year I was diagnosed with endometrial cancer (1999) was followed by CEA for quite a few years.

Just my opinion, but if I were you, I would get the second opinion on pathology and treatment anyway, despite what your surgeon says, if for nothing else but peace of mind.

I'm curious what sort of dietary recommendations they give you. I can't eat many things due to all my gastro issues discovered on endoscopy and follow-up testing last year, so this has become my hot new area of interest.

Sending healing thoughts your way!

NoTimeForCancer

dang girl! in your appendix too? THAT is a rare cancer but excellent they saw/got that.

I love how you spell it all out - especially the be your own advocate. For now, be kind to yourself and remember rest is restorative. I love hearing from you and all you do for us.

Mercorby

https://csn.cancer.org/discussion/327675/my-sidetrip-to-colorectal-cancer-and-a-reminder

So glad to hear that you are on the mend from your surgery. I understand the quality of life priority. You and your husband have many fun times and adventures ahead of you.

dMMr and MSI are both indicators that immunotherapy could work for systemic treatment. However, there are side effects. A second opinion is a good idea, especially if you don't agree with your current onc team. You are absolutely correct. You are your own best advocate. Knowledge about your cancer and the various treatments, and the awareness of how those treatments affect the quality of life puts you in the driver's seat. Thanks for reminding us all of that important message.

Best wishes,

Corby

oldbeauty

Thank you, ladies, for your kind good wishes.

I don't yet have a complete monitoring plan. If I end up going for some kind of chemo/immunotherapy, I will be followed by that specialist, whom I will meet this week. If not, the surgeon follows me, and I know he wants semi-annual CTs and annual colonoscopies. I would think tracking liver function/distress would be in order since that's apparently the most likely recurrence spot. I'm sure we'll do CEA (it was <2 before surgery). I have several vitamin/mineral deficiencies, and this surgery will make supplementation for those permanent, and, of course, we know Metformin depletes B12. I'm concerned about my iron deficiency despite supplements and infusions, and expect to get into this with my PCP later this month. I'm going to be more assertive (following my own advice) as I don't understand why my Iron saturation %, RBC, Hg and hematocrit are always low. I want to talk about the function of my bone marrow. If I don't get satisfaction there, I will take it up with my functional medicine physician, or perhaps ask for a referral to a hematologist. I will start to research what is involved in getting 2d opinions at the 3 cancer centers I've identified as being the top 3 for CRC. If I go for it, I will start that process after the chemo consult. I won't see the gastro/geneticist until the second half of 2024. It's that doc I hope to get the genomic testing from, but I will ask the medical oncologist also.

I really don't know what else I can do. I am quite capable of going down an endless rabbit hole of speculation and "research." For example, last week I got to thinking how my past history is remarkable only for serial tonsillitis when I was a kid. So I Google "tonsillitis and cancer," and ended up reading an article about tonsillectomy leading to a decrease in immune function, and finding a correlation with irritable bowel disorders. Now, what do one do with such info? Tonsils are long gone; I have an immune deficiency of unknown etiology; and, I've already decided to live as if I have dx'd irritable bowel (bc maybe I do, and its inflammation may have caused the CRC) unless someone can definitively rule it out (I've asked for the pathology to be reviewed for that). I know I have a mentally unhealthy perseverative bent (not, as I originally thought when my oncologist used the term, a compliment, even though its root is "persevere"). I've started with a therapist in hopes of settling my mind and gain peace of mind with mortality.

None of this means I'm giving up or giving in to cancer. It's just that with 3 different cancers found and old age closing in it seems to me my healthy living program could usefully be expanded to include a path to acceptance of who, what and where I am and peace with the choices I make. At this point I am mainly interested in staying fit and being a helpmate to my darling in his struggles. I no longer want to be obsessed with my cancer(s). A tall order, but personal growth is better late than never, eh?

Best wishes to all, Oldbeauty

woodstock99

Sending healing vibes your way and answers to your questions. Be well and keep your wonderful attitude.

ConnieSW

Have I told you how much I admire you, Old Beauty?

oldbeauty

So, the final update on my side trip to colon cancer. I'm about 6 weeks post-op for a right hemi-colectomy and have attended all my follow-up appointments. Met with the hematologist oncologist who says I am Stage IIa which means no chemo is indicated. Hurrah!! (wasn't going to agree to the platin drugs again anyway; but still, better to have no drama around the decision) She wants to follow me anyway (as does the surgeon?!?) for a few years. She said annual, not semi-annual, CTs which is fine by me. She'll see me in 6 months for labs. Then, at the year anniversary I'll have a CT and go see the surgeon (and more labs). The visit to the geneticist was interesting but ultimately unavailing as to causation. She took my family history, which is mostly unremarkable. My mother's DCIS lumpectomy when she was 40 and an excision of a lesion on her back that I'm sure she said was a malignant melanoma when she was 78 seemed to be of most interest. They took blood and sent it off to a company named Invitae for analysis. They test for 48 mutations, which if they show up they are so-called germline mutations (my inherited traits). Lynch Syndrome is not present. Only two came up: BRCA2 and KIT. Both of these mutations were found on the genomic analysis of my UC tumor tissue removed from my lung 3 years ago (no surprise there under the circumstances). She called me to discuss the results. As for the BRCA2 mutation, she said there is one lab (but not Invitae) that identifies this mutation as "likely benign." As for the the KIT mutation, she said there was insufficient research to reliably provide guidance (hence it's a "variant of uncertain significance"). Bottom line, business as usual: get your mammograms; get your colonoscopies; get your skin checks. Will do. The KIT mutation interests me. It appears in cases of rare GI stromal tumors (which I did not have), as well as melanoma and blood disorders. I've had a few squamous cell carcinomas taken off my back and did topical chemo cream on my nose and upper lip. But I was stupid many times in my youth getting horrible sunburns so there's that. I will rely on the KIT mutation info to remain steadfast in my fight to get my iron stores and RBC up where they belong. My WBC is always OK so I don't really fear I am headed to leukemia but a little "light" reading indicates the KIT mutation can cause inadequate red blood cell production in the bone marrow. I'm certainly not pushing for a spinal tap but I am not going to be deterred from dogged pursuit of healthier oxygenation via persistently normal labs. All the excuses are falling by the wayside: the CRC tumor is gone so that's not a culprit in my iron deficiency; I'm weaning myself off of Metformin for a month or so to take that out of the equation as a cause of my persistent diarrhea (which is robbing my of nutrients and proper iron metabolism). So far, I'm on a half dose and there's no change in my bowel function. Next, I'll halve my dose again and see what happens. My functional medicine specialist ordered labs to check for levels of key nutrients that are metabolized in the sections of my small and large intestines that were resected to get me on any needed supplements. And, I've had a few therapeutic sessions with the therapist and will continue with that. And, Spring is definitely on its way in my gray part of the country, and I'm excited to get outside and dig in the garden. So, all in all, I'm a happy camper.

Life goes on. Best wishes to all, Oldbeauty

Forherself

That is good news in my opinion. Your exploration of the genetics of your tumor and possible inherited mutations is very interesting. They are making great strides in identifying the acquired mutations that cause a cancer cell to be aggressive. I read a great article on PBS about a new line of investigation, gene switches. I can't find the article now, but it said cancer cells reproduce so quickly that they are many "years" older than regular cells, and have more mistakes. It will be interesting to see what your genetic investigation into being prone to cancer shows. My husband has 3 relatives that have melanoma. I have a friend who has prostate cancer. Both his brothers died of it and his nephew also. His mother had breast cancer. There are some things to learn about this.

cmb

https://csn.cancer.org/discussion/comment/1713806#Comment_1713806

I’m glad to read that your surgery follow-up went well and that you’ll only need to have CT scans and labs on an ongoing basis.

There’s been so much expansion in the genomic and genetic testing area since my surgery back in 2016. I was only tested for Lynch Syndrome and even then, I had to fight with my insurance company to cover the cost (which they finally did agree to pay).

With Lynch, I do have colonoscopies/endoscopies every two years and mammograms every year. I’ve gotten CT-scans when I’ve reported a potential issue, but not routinely.

I just ended a trial of Jardiance for my type 2 diabetes in the hopes that it would help the gastro problems I’ve had ever since I started on Metformin after my diabetes diagnosis. So I’m back on Metformin for the time being. Whether that has helped prevent a cancer recurrence I don’t know. 

Mercorby

Hi,

Sounds like you are ready to focus on doing the things you like to do and to put cancer on the back burner. You know what you have to do with cts and check ups. I'm glad you gave us the updates. It looks like you know your mutations, your health needs, and that you can advocate for your health. Bravo to you!

It will soon be spring! Time to enjoy the renewal of wonderful flora and fauna, family, and friends. Have a beautiful new day everyday.

Warmly,

Corby

MoeKay

So happy to hear that they're not recommending chemo or anything other than close monitoring, oldbeauty!

I will be interested to hear whether weaning off the metformin has any impact on your iron deficiency. I did a quick search on metformin and anemia and got a number of hits, but I didn't delve into the issue. I'm sure you've already explored that possibility in your extensive research. These issues never seem to be straightforward, do they?

Congratulations on your wonderful news! Stay well and happy spring!!

MoeKay

oldbeauty

CMB, I'm reading a PubMed article that is a 2016 overview of Metformin ("Metformin and the gastrointestinal tract." 01/16/2016 issue of Diabetologia. PMID 26780750). I came upon it while Googling "why does Metformin cause diarrhea." I need to read it a few times before I am comfortable formulating a question for the doctor. I am chagrined to discover that Metformin may well be the culprit in my chronic diarrhea. Apparently, it is not uncommon that chronic diarrhea affects folks who have been on it a long time and who, it was thought, had resolved the GI issues that often arise when the medication is first started. Of course, for diabetics who cannot tolerate Metformin, the answer is to cease using it and the problem goes away. But I am not diabetic and I do not want to stop using Metformin. So, the idea I am researching is whether I can ramp my dosage back up to a therapeutic level (for me, 1500 to 2000 mg/day) and resolve the diarrhea by taking the bile salts sequestrant (cholestyramine) that the GI surgeon prescribed when I told him I still had explosive diarrhea after the colon surgery. I haven't started it yet because I wanted to first "prove" to everyone that the Metformin had never been the problem. (egg on face!) Long story short, on first reading it seems to me that my idea may have merit. I would rather take the bile salts med than dose with Loperamide. There are no reported interactions between Metformin and cholestyramine but I won't mix them until I ask my doctor what he thinks of my idea. There is also (I think) info in the article that suggests I might be better off with the immediate release version of the drug. There's a section on the different formulations and how they uptake in different areas of the GI tract. The immediate release is metabolized hugher up which would be better for me because I no longer have my ileum. You might find this an interesting read.

Best wishes, Oldbeuaty

Mercorby

Oh my, so much to consider here! Now I will have to do my own research too! Diarrhea is not a good thing for a swimmer to have! I just picked up my prescription for Metformin. The dr told me to wait until after the SGO conference to try it. Good things most of the pools are closed for repair for the next 2 - 3 weeks!

Like you, I don't have diabetes, but I finally found an onc nutrition dr who said it would be good for dealing with the pi3kca pathway, which my cancer likes to follow.

Please keep us posted on what your doctors say.

Fridays Child

oldbeauty, I'm sorry to read what all you've been through. I continue to be amazed at your thoroughness of research. Glad to hear your follow up will be relatively easy and hope you continue to improve.