Shifting my attention slightly

oldbeauty
oldbeauty Member Posts: 362 Member

Hello ladies,

Does anyone know about changes in microsatellite instability from "stable" to "high?" And what about changes from mismatch repair deficiency "absent" to "present?"

I thought the designation was always one way or another and was imprinted in all your cells. I think now it is dependent on the tumor tissue. I am confused.

I hate to report this, but it appears I am dealing with a new primary cancer...colon cancer. My screening colonoscopy did not go as I planned🤨. Doc found a pre-cancerous polyp in my rectum (removed) and an "invasive moderately differentiated adenocancernoma" in my ascending colon. I will be doing further diagnostic imaging, and surgery lies ahead for sure. Chemo and/or immunotherapy may be in the offing (hope not).

I had CARIS genomic testing done in 2020 on resected metastatic UC tissue in my lung, and it reported I was MSI-stable and MMR status intact. With just colon biopsy tissue to work with, the pathology says MSI-High and dMMR. AS far as I know, I am negative for Lynch Syndrome.

So, does anyone know if the genomic results of these markers depends on the type of cancer tissue?

I dread the prospect of researching and becoming conversant with a whole new bag of worms. And on top of this, my darling spouse is soon to be diagnosed with a degenerative neurological disorder. I've had a very fortunate UC journey these 18 years. I am hopeful this latest cancer can be dealt with through surgery, so I can be there for my darling. It seems it might be early, although the tumor grade is intermediate (like my UC). I am gearing up for specialist visits, and I am pushing for a full body PET/CT. It's just that you think you know something only to find you know a miniscule portion of this big subject.

Anyway, my first loyalty is to this board, and I wish you all good health and a wonderful holiday season. I need to shift my attention to the Colon Cancer discussion board to find out who are the counterparts to the awesome, knowledgeable ladies who make this board such a wonderful resource.

Best wishes,

Oldbeauty

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,335 Member

    ooooh Oldbeauty. I hate to hear this. I would 'assume' a new, primary cancer could have different designation than what the UC you had.

    In general, you have always been tuned in to general background on cancers (you and a few others always impress me!) So MSI-high and dMMR is being found to be responsive to immuneotherapies and are starting to be used in first line therapies.

    While you will be visiting other sites for others going through it for tips, please do let us know how you are doing. Hugs dear friend

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thanks, No Time. I remain optimistic. I've had such good luck (everything is relative with cancer!) and I feel so well. I am just gobsmacked about this. One tumor marker, CEA, was negative so there's that. And I had a NED CT in March. It's just that this coming on top of my darling's issue is just heartbreaking. I had a panic attack on last night after delivering the news to family, but I am chipper today and back doing battle with the medical juggernaut (Them: "Hmmmm. I've never heard of that before. You want to schedule a second surgical consult? You already have an appointment with one of our excellent surgeons." Me: "Yes, please." Them: "You'll be contacted by the practice manager.") Gimme a break!

    And so it goes. Yes, I will come back with news. Thanks again for your kind words.

    Best wishes, Oldbeauty

  • Forherself
    Forherself Member Posts: 940 Member

    Dear Oldbeauty... so sorry you are having to deal with this now. Yes, I would say the new primary colon cancer has its own mutations. I am hoping it is localized and treatable. Cancer treatment has improved so much. I am glad you had your colonoscopy! Praying for your good outcome.

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you, Forherself. That's my hope as well. Yes, I think we all here are mindful of the need to keep up with screening exams for all the cancer enemies out there. Thank you for your kind message. Best wishes, Oldbeauty

  • MoeKay
    MoeKay Member Posts: 472 Member

    I'm really sorry to hear this lousy news, Oldbeauty, both of your colon cancer diagnosis and of your husband's neurological disorder. I think it's good, however, that your cancer was found on colonoscopy and therefore much more likely to be very early stage than if you had discovered it after experiencing symptoms. I can tell you that my sister-in-law had a colonoscopy about 8 years ago which found colon cancer. I put her in touch with a surgeon I was familiar with based on his reputation and experience and he performed her surgery. My SIL needed no further treatment and has had no evidence of disease since her surgery.

    I wish both you and your husband nothing but the best! I know you will keep us posted, and I will also keep an eye on the Colon Cancer Board for your posts.

  • Mercorby
    Mercorby Member Posts: 77 Member

    Aw, so sorry to hear this and what you are going through now. I can imagine the range of emotions too. Please keep us updated. Sending love and healing vibes.

    Corby

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thanks so much, MoeKay. I, too, am hopeful for surgery and done. I wrote this sitting waiting for a tow truck bc my car just overheated a day after being in for that issue! When it rains ...

    Best wishes, Oldbeauty

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you for your kind words, Corby.

    Best wishes, Oldbeauty

  • cmb
    cmb Member Posts: 1,000 Member

    Oldbeauty,

    I’m so sorry to read about your colon cancer diagnosis and your husband’s situation. My post-surgery indication that I possibly had Lynch Syndrome was later confirmed with genetic testing. But haven’t read about MSI stable later shifting to MSI high. If you find out more about this please let us know.

    Because colon cancer runs in my family and I have Lynch Syndrome, I do read the colon cancer board occasionally. There are a lot of very helpful people there too. I’ll be thinking of you during this difficult time.

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you, cmb. It's good to see you back. I am certain I was told after my lung resection 3 years ago that genomic analysis confirmed I did not have Lynch. You either do or you do not, I believe. What has me puzzled is the microsatellite and mmr status. I had thought these were rooted in your genes and not in the tumor morphology (or whatever the proper term is), but I guess I have something to learn. The pathology addendum that had the results for msi and mmr simply has boilerplate that the results indicate further investigation is warranted relative to Lynch. We'll see. Tomorrow is the CT and the next day is the surgical consult. I am disheartened by this turn of events but I remain hopeful it is early stage and easily resected. Best wishes to you, Oldbeauty

  • cmb
    cmb Member Posts: 1,000 Member

    I understood the reason that I needed genetic testing after my MSI-high results from surgery was that this condition could have been caused by a mutation within the cancer tumor itself or by inheriting Lynch Syndrome. So even if you don’t have Lynch Syndrome, your current tumor could be MSI-High, even if your previous cancer wasn’t.

    While I haven’t needed immunotherapy so far, I was happy when this type of treatment became available while I was undergoing initial treatment because I was MSI-High. Of course, there are so many newer treatments now than we were diagnosed, it gives all of us options that didn’t exist before.

    Let us know how the scan and consult go. I, too, am keeping my fingers crossed that it has been caught early.

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you, cmb. Yes, cancer is a devil. Mutate and survive. I am not knowlegeable but I am aware that this tumor's msi/mmr status may make it more likely I am a candidate for immumutherapy treatment. I am concerned about further chemo bc I believe the platin drugs are used. I cannot accept any worsening of my neuropathy, for fear it would knock me off my feet. My desire is to be a helpmate to my husband as he falters with his movement disorder. If we both become too compromised, we're in a real pickle. Best wishes, Oldbeauty

  • BluebirdOne
    BluebirdOne Member Posts: 653 Member

    I have been away and read these comments with a heavy heart. Old Beauty, you have been such an inspiration and source of support in my 5 years here... I remember your explanation about why your name here is "Old Beauty" from a while ago and am saddened that both of you are facing new issues. Please keep in touch! We are here for you.

    xxoo

    Denise

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you, Denise for your warm good wishes. I had my first surgical consult yesterday. CT showed no spread of disease. Strangely, the report didn't even mention the colon mass, no measurement, no nothing. I guess the reader took the reason for the scan literally...rule in/out metastatic disease. I continue to shake my head at what I experience as a wide disparity in the quality of radiology reports. But the surgeon was thorough, and presented his plan. He would take my entire ascending colon and re-attach the remains of the ileocecal valve to the transverse colon. He would begin lapaoscopically but may have to open me up if my bowels have drifted down to settle in the area previously occupied by my uterus and/or if he encounters radiation damage. This is going to be the most major surgery I've had, and I will be in the hospital for about a week. He does not expect me to need a temporary or permanent ostomy, thank goodness. And he will sample lymph nodes in an area he showed me. He also talked about redirecting the vasculature in there, cutting off blood supply to the nodes closest to the the tumor. He said everything follows from the pathology that will take a week to process after surgery. We are looking for depth of penetration, and more certitude about this Lynch issue. And whether adjuvant therapy like chemo/immunotherapy is indicated. He pointed out that I'd also had a breast biopsy done, and it may be that I have a genetic pre-disposition to Lynch while family history and genomic analysis might not indicate that possibility. Confusing, but I will follow his direction and consult his colleague for genetic counseling.

    I am glad I made an appointment for a second surgical opinion. On reflection, I realized I spent way too much time on my medical history with the first consult, and I have lots of follow up questions about the actual surgery itself, and my functional staus afterward (frequent visits to the toilet and looses stools...whoopee!). Now that I know what I'm facing, I'm heading over to the colon cancer board to see what insight/advice I can gather there. And hubby and I are going out to a nice meal next week to early-celebrate our mutual 70th birthdays which will fall during a time when I willl be on a restricted diet. We are relieved this appears manageable and we can continue to soldier on together to get through his diagnostic journey. Like my mother always said, "Old age ain't for sissies!" One step at a time.

    What a way to ring out the year! Best wishes to all the ladies here. Oldbeauty

  • cmb
    cmb Member Posts: 1,000 Member

    Good news from the CT scan. My gastroenterologist had told me when I first started to get the biennial endoscopies/colonoscopies due to Lynch Syndrome that a CT scan will only show when cancer has spread outside the colon. It doesn’t see into the colon, thus the need for endoscopies/colonoscopies.

    I’m glad that you have greater clarity about what to expect from surgery and after effects. I know it sounds daunting, but I believe that your past cancer experience will help you get through this one too.

    An early birthday dinner is a great idea! 

  • thatblondegirl
    thatblondegirl Member Posts: 381 Member

    Dear Oldbeauty,

    I haven’t been around much, so I missed seeing your posts. I’m so sorry you’re dealing with this new cancer and your husband’s issues, also. You have a great attitude! I admire you so much!

    I had 8” inches of my colon removed because it was strangled so much from scar tissue (from GYN surgeries) that it was almost completely closed off…and I would guess very close to a blockage emergency!

    I was in the hospital for 6 days. I did not have to have a colostomy. It was a very, very miserable surgery to recover from, much worse than open heart or the lung cancer surgery I just survived very recently! My body had a very hard time adjusting to the loss of working colon. Good news is…I DID recover and was great again! You can do it!!

    ♥️♥️♥️, A

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you, "A". I am not looking forward to the surgery, or the adjustment afterward, but it is inevitable so I am accepting it as I must. I am curious, did you have an open incision (due, I would imagine, to Gyn-related scar tissue) or was it possible to complete it laparascopically? Do you have any advice for the recovery phase? Any "real-world" experience is welcome. Best wishes, Oldbeauty.

  • thatblondegirl
    thatblondegirl Member Posts: 381 Member

    Dear Oldbeauty,

    Doctor said he would try to do laposcopically -he thought he was going in to clean up a cancer recurrence- and if he had to remove part of my colon he would have to do open incision. So, that’s what I had…basically two lines (4-5 inches?), situated in a cross shape. Incision wasn’t a problem.

    In the hospital I thought pain was a problem. I said, “Whatever happened to the morphine with the little button you could push???” Oh…we don’t do that anymore. I said, “Wow. That’s too bad!” I kept noticing that it’d be 4+ hrs since I had pain meds. “Can we just get on a schedule? Like 12,3,6,9???” No…you have to ask us for it! Set an alarm on your phone! Then you won’t forget to ASK!! Pain makes me nauseous…so they kept saying, “We’re going to give you more nausea medicine now.” I’d say,”Nausea is not my problem! Not enough pain meds is my problem!” (After my lung surgery they practically had to beg me to take pain meds! I have a very high tolerance, so keep an eye on your pain!)

    This last surgery I bought simple, $20 ear protection on Amazon. Changed my hospital stay completely! I highly recommend! Block out all that hallway noise! I always have a sleep mask, also. Surgeon said first morning, “Wow. You came prepared!!” I said, “Not my first rodeo.” I always take 2 extra billows, too!

    They wouldn’t let me go home until I pooped. No small feat. I BEGGED to go home sooner. Begged! Nope. No dice. So, take every stool softener they offer! The pain meds will be working against you! After I got home constipation continued to be a problem.

    I wish I had some magic bullet advice. It just takes time. I hope at least one thing I mentioned might help. As I said before, You can do it!!

    Hugs & Love, A

  • oldbeauty
    oldbeauty Member Posts: 362 Member

    Thank you, very helpful. I, too, hope to avoid an open incision. Best wishes, Oldbeauty

  • BluebirdOne
    BluebirdOne Member Posts: 653 Member

    oldbeauty,

    I am thinking of you as I know you will be having surgery soon. Sending you love and best wishes from the frozen tundra of Kansas. (lol) We are here for you!

    xxoo

    Denise