Dodged a bullet

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Comments

  • 462lt
    462lt Member Posts: 117

    Hey Laura and dschreffler,
    Hey Laura and dschreffler, what was your T- level? Mine is T-3 and TAE is really only recomended for T-1 & T-2 so that was never given to me as an option. Did either of you request this option from your surgeon or did they offer it? The studies pretty much all discourage the TAE for T-3 because of high recurrence rates. They haven't checked yet how my tumor responded to the neo-adjuvant treatment. It is surely a tough decision to go with a radical resection and have more peace of mind or the TAE and get more frequent scopes and tests and worries. Do you know if they remove any lymph nodes to test them when they do a TAE or they can't because they're not opening you up? How then can they tell for certain about lymph node involvement?
    Thanks, take care,
    Chris

    Chris
    I had a T-2 tumor but alittle worried that I did not get complete response from chemo and radition I still have a small tumor. I told my surgeon straight up first meeting that I was not interested in a colotsmy so he had better have another option lol.He recommended a certain protocal which I followed that showed a good response for t2 and t3 tumors. They do not remove any lymph nodes during a TAE. I asssume they count on CT's and Pets to find that I had both several month ago before treatment started and they were clean. Not that that really means anything. When are they going to check your tumor for response to the treatment? I am going ahead with the TAE because that is not really burning any bridges if I need more radical surgery can always decide later. My biggest worry is the envirnment I work in. It is very hot here in Tampa and I work in an unairconditioned building and do very physical work lots of lifting contorting and bending I just can't figure out how a colotosmy would allow me to work. When I say hot I mean sometimes it 109 degrees in the cabin of the airplanes and 75% humidity. I sweat alot. Oh well I guess I will cross that bridge when and if I need to. Laura
  • John23
    John23 Member Posts: 2,122 Member
    Aside from the "what-if's".....
    A cancer tumor spreads cancer cells for as long as it's in your body.
    The individual cells can not be detected with present-day technology,
    and I seriously doubt it ever will be.

    The stats that your onco gave you are fairly accurate, since the odds
    are always better for those that have a tumor surgically removed, rather
    than just treated by hit or miss chemicals.

    Yeah, I know seeing those words in print P's off a lot of people, but if
    you don't face reality, you'll be a member of the "they never told me" group.

    The odds are better for those that have surgery and nothing afterwards,
    than cases of "no surgery", and all chemo and radiation.

    That's why he's telling you that the odds are better if you have surgery
    to remove the entire tumor area.

    I would suggest you visit the UOAA forum and learn about colostomies,
    and how they are often considered "life saving".

    You've waited a long time since diagnosis, and every day you
    put off surgery can work against you. If you have a tumor, get it
    out as fast as you can, and deal with the surgical aftermath as best
    you can.

    Both chemo and radiation can do more long-term damage than
    a decent surgeon.

    Good luck; good health!

    John
  • imagineit2010
    imagineit2010 Member Posts: 152 Member
    lisa42 said:

    I was one who skipped the surgery
    Hi,

    It was likely me you are remembering who skipped the surgery. First of all, I am outraged that your doctor said "you'll die from this cancer"- especially with you being in an earlier stage! He's a doctor I'd get rid of quickly!!

    Anyhow, I was dx'd at stage IV and wasn't a surgical candidate at first because it was so bad in the liver and lungs. I did Folfox chemo for 6 months, had a fairly good response to that, then was told it was time to concentrate on my initial rectal tumor. Since it was so low and near the anus, I was told having radiation before surgery would shrink it and make the possibility of not needing a permanent colostomy (due to the location) as likely. So I went through 6 weeks of radiation and my rectal tumor completely disappeared and follow up biopsies showed no sign of cancer in the rectum at all. So, my colorectal surgeon and I made the decision together to not do the surgery. I felt very strongly about it at the time- my cancer had already spread anyhow and I didn't see the need to get used to an ileostomy bag and then the reversal later if there was no longer any cancer in the rectum. My surgeon told me if it had been a year earlier (this was March 2008), she would have insisted on doing the resection anyhow, even with no more signs of cancer. She said many colorectal surgeons are now deciding on a case by case basis whether to do the surgery or not. I must emphasize, however, that this is more the situation in patients that are already stage IV, maybe some stage III. The surgeon also told me at the time if I had been a stage I or stage II, she would have been more likely to insist on the surgery to prevent a recurrence there & hopefully prevent any spreading of the disease.
    With that said, I do happen to have a neighbor who had stage I rectal cancer, went through the radiation and had a complete response (tumor and tumor cells disappeared). That was 8 years ago and she's never had the surgery or any kind of recurrence.

    With all that said, I don't know if you also read here a few months back that I have had a recurrence in the rectum at my original tumor site (along with the recurrence in my liver and more growth in my lungs). This was discovered in February. Since then (in March), I started on a new chemo- was scanned in May and things were stable. I have my next scan in two more days- Monday Aug. 31st.
    Even with the rectal recurrence at this point, the only reason I would consent to having a rectal resection surgery now would be if the tumor were really large and was causing a blockage or other problems. At this point, I've had some bleeding but no other complications or problems from it. If I had this local recurrence and I was initially a stage I or II- heck yah, I'd have the surgery and get it out of there to prevent it spreading into lymph nodes or organs. But as a stage IV patient, I really see no reason to put myself through a surgery for something that isn't bothering me when I'm currently on chemo for stuff in the liver and lungs anyway.

    So you have to be the one to make your own decision. My stage I neighbor is very glad she never had the surgery, and she was fortunate to never have a local recurrence. BUT, as you know, a recurrence is possible and does happen in some. At that point, it could be recurring as metastasis in other organs, and then the prognosis for cure really takes a dive. Definitely a tough decision.

    Best wishes to you...
    Lisa

    oh yea,
    Thanks Lisa, as soon as I saw your post I remembered it was you. Obviously your condition was different than mine and thanks for providing some details to your situation. I know some people on here voiced a concern for the Oncologist's choice of words but wouldn't you agree? If I was stage II and sought no treatment wouldn't you assume I would eventually succum to the disease? Even stage I? Even pre-cancerous polyps? I mean, isn't that the course of this disease? Isn't the plan usually, catch it early, treat it agressively, stay vigilant to follow-ups? I don't fault the Onc for using the direct approach for my options. (I don't really like him much for other reasons). Death is always one of the less popular options...
    Lisa, did you know the T-stage of the primary tumor? Can you be a stageIII or stageIV with a T1 or T2 primary tumor. I'm guessing you can if the spread was via the blood stream. I guess alot of this is luck, good or bad. Some stageIV's do pretty well if the metastasis is in a treatable organ and some have the first spread go directly to the brain or bone. It's crazy. I'm sorry to hear of the recurrance but I'm glad you are stable for the time being. Maybe this new Chemo will do the trick. Here's hoping the scan looks good.
    Take care,Chris
  • PGLGreg
    PGLGreg Member Posts: 731

    oh yea,
    Thanks Lisa, as soon as I saw your post I remembered it was you. Obviously your condition was different than mine and thanks for providing some details to your situation. I know some people on here voiced a concern for the Oncologist's choice of words but wouldn't you agree? If I was stage II and sought no treatment wouldn't you assume I would eventually succum to the disease? Even stage I? Even pre-cancerous polyps? I mean, isn't that the course of this disease? Isn't the plan usually, catch it early, treat it agressively, stay vigilant to follow-ups? I don't fault the Onc for using the direct approach for my options. (I don't really like him much for other reasons). Death is always one of the less popular options...
    Lisa, did you know the T-stage of the primary tumor? Can you be a stageIII or stageIV with a T1 or T2 primary tumor. I'm guessing you can if the spread was via the blood stream. I guess alot of this is luck, good or bad. Some stageIV's do pretty well if the metastasis is in a treatable organ and some have the first spread go directly to the brain or bone. It's crazy. I'm sorry to hear of the recurrance but I'm glad you are stable for the time being. Maybe this new Chemo will do the trick. Here's hoping the scan looks good.
    Take care,Chris

    "Can you be a stageIII or
    "Can you be a stageIII or stageIV with a T1 or T2 primary tumor?"

    I'm not very knowledgeable on the ins and outs of staging, but I think that would be a "yes". If cancer is detected in the lymphatic system, you're stage 3 (or 4), regardless of the Tx type. If you have a distant metastasis, you're stage 4, regardless of the Tx type and regardless of whether cancerous lymph nodes are found.

    --Greg
  • Aud
    Aud Member Posts: 479 Member

    Hey Laura and dschreffler,
    Hey Laura and dschreffler, what was your T- level? Mine is T-3 and TAE is really only recomended for T-1 & T-2 so that was never given to me as an option. Did either of you request this option from your surgeon or did they offer it? The studies pretty much all discourage the TAE for T-3 because of high recurrence rates. They haven't checked yet how my tumor responded to the neo-adjuvant treatment. It is surely a tough decision to go with a radical resection and have more peace of mind or the TAE and get more frequent scopes and tests and worries. Do you know if they remove any lymph nodes to test them when they do a TAE or they can't because they're not opening you up? How then can they tell for certain about lymph node involvement?
    Thanks, take care,
    Chris

    Hi, Chris
    Everyone's story is different, of course, and mine is this: stage I rectal cancer, T2 tumor at or just above the dentate line, determined to be T2 only after TAE (but earlier, based on ultrasound/MRI, believed to be either T1 or T2--team wasn't sure--though surgeon was pretty sure T2 by "the way it felt") Tumor Board recommended TAE based on biopsy, US, MRI. After TAE, positive margins (not good) laterally, but not depth-wise. My surgeon then said 5 different doctors would have 5 different opinions. I didn't do any research (till later) and listened to my surgeon who had recommended and then did a re-excision about a month later. Clear margins this time, but rather questionable as the surgeon was not able to get 1 cm margins due to location (so close to sphincter). His thoughts were there had to be some cancer cells left behind. Followed by 6 weeks radiation/oral Xeloda with its usual lovely accompanying side effects. PET scan clear in March, frequent checkups every 3 months. My surgeon said that 80% of recurrences usually show up in the first 2 years and 90% in the first 5 years.
    Did I do the right thing? I don't know. My surgeon's original idea (before US/MRI/TAE) was chemo/radiation followed by APR/colostomy. My mind was swirling and just when I thought I was getting "used to" the idea of colostomy, Tumor Board recommended TAE. My surgeon feels we did the right thing but I torture myself now and then.
    Here's some things I did learn after doing research afterwards. Radiation does work better on tissue (that is still well oxygenated) before surgery since there is hypoxic tissue after surgery that doesn't necessarily respond as well to radiation. With TAE, no way to know for certain if lymph nodes involved since, as you said, you're not opened up. US/MRI are helpful but not perfect. And, as Greg said, and from what I've read, mets can happen with any T type, although other characteristics also come into play (i.e. the type of tumor, not just T type, lymph/vascular invasion).
    As someone else suggested, I'd talk to an ostomy nurse. When I thought I may be having APR, and feeling overwhelmed and sad, I talked to my surgeon's physician assistant. He was very positive and helped me to feel that life could be full and normal after colostomy. We talked about everything: work, sex, exercise. I know it's tough and I feel for you, Chris. Prayers and good thoughts to you for your visit with your surgeon.
    ~Audrey