newly diagnosed, looking for info

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Comments

  • daisy62
    daisy62 Member Posts: 7
    #42
    Hello
    I am sorry to hear about your diagnosis. I guess it depends on the doctors as to what they suggest one should do. I opted for surgery, I had a colostomy 8 weeks ago along with two lymph nodes removed (showed active). After a discussion with my doc we decided to have all the lymph nodes on my right side from my groin to the middle of my thigh removed. Had surgery last Friday.

    Went for my post-op today, the results from the biopsy were back. Good news, one lymph node was beginning to show active (not the good news). The good news is that it worked out making the decision to remove all of the lymph nodes. At this point I go to the oncologist and determine how often I will need to be tested. No chemo or Radiation. I chose to go at this very aggressively, I went to 3 doctors to make sure I was making the right decision.

    God Bless,

    daisy
  • Marynb
    Marynb Member Posts: 1,118
    #43
    daisy62 said:

    Hello
    I am sorry to hear about your diagnosis. I guess it depends on the doctors as to what they suggest one should do. I opted for surgery, I had a colostomy 8 weeks ago along with two lymph nodes removed (showed active). After a discussion with my doc we decided to have all the lymph nodes on my right side from my groin to the middle of my thigh removed. Had surgery last Friday.

    Went for my post-op today, the results from the biopsy were back. Good news, one lymph node was beginning to show active (not the good news). The good news is that it worked out making the decision to remove all of the lymph nodes. At this point I go to the oncologist and determine how often I will need to be tested. No chemo or Radiation. I chose to go at this very aggressively, I went to 3 doctors to make sure I was making the right decision.

    God Bless,

    daisy

    Daisy
    Hi. I am sorry you had to be here. I am glad you are doing well now. Do you mind if I ask where you were treated and what stage you were? I am wondering if you are in USA? Surgery was never once discussed as an option for me.
  • daisy62
    daisy62 Member Posts: 7
    #44
    Marynb said:

    Daisy
    Hi. I am sorry you had to be here. I am glad you are doing well now. Do you mind if I ask where you were treated and what stage you were? I am wondering if you are in USA? Surgery was never once discussed as an option for me.

    I am in Arizona. Again, I
    I am in Arizona. Again, I chose to go at this very aggressively. All three doctors said that with this type of cancer chemo and/or radiation don't always work. I am not the type of person that want to wait and see. I just want this out of me and go on. One of the doctors was from the Mayo clinic in arizona.
  • sandysp
    sandysp Member Posts: 868 Member
    #45
    LaCh said:

    thanks
    Thanks mp327,
    Thanks so much for your quick response. I'll check out the website that you recommended. The oncologist has treated anal squamous cell carcinoma before; he was recommended by my gastroenterologist who said that he has and that they've treated many patients with this together in the past. I'm in New York City so odds are he's going to be as good as any. The only reason that I assumed that I'd need followup surgery was because that's what the gastroenterologist said, but it would be really great if I didn't. The reason that I wanted to ask patients about their experiences was to get the story from THEIR perspective, rather than only that of the doctors. They sometimes have (an ultimately counterproductive) way of ommitting or downplaying certain things. I have and have had a deep mistrust and dislike of western medicine and it's practitioners (with the one utterly incredible exception of the gastroenterologist. I feel extremely lucky in that, despite my deep misgivings and negative feelings about the medical community, just when I really need someone to trust, and in the worst way, it happens to be someone involved in THIS. She's an absolute saint, just a decent, decent human being who "gets me" in the most important ways). Anyway, thanks again, I really, really appreciate your words and thoughts.

    MSK
    I was told by numerous doctors (even a top notch colo-rectal surgeon) that if he had this particular type of cancer, he would go to Memorial Sloan Kettering. My experience with MSK as it has been nothing short of spectacular care, whether it is someone taking blood, or answering phones or one of their beautiful rock star doctors. Everything top to bottom is thoughtful for the cancer patient. I am close to the City but we have a satellite in Sleepy HOllow where I took many of my treatments. My doctor is Dr. Weiser in the City. I would send my materials in if I were you. You can't go wrong there.

    Good luck,

    Sandy
  • Marynb
    Marynb Member Posts: 1,118
    #46
    daisy62 said:

    I am in Arizona. Again, I
    I am in Arizona. Again, I chose to go at this very aggressively. All three doctors said that with this type of cancer chemo and/or radiation don't always work. I am not the type of person that want to wait and see. I just want this out of me and go on. One of the doctors was from the Mayo clinic in arizona.

    Daisy
    I am really surprised. I was never offered that option. I am sure my doctors knew that I did not want to take any chances. The topic of surgery never was presented to me and I went to top rated hospital. I wonder why?
  • Marynb
    Marynb Member Posts: 1,118
    #47
    daisy62 said:

    I am in Arizona. Again, I
    I am in Arizona. Again, I chose to go at this very aggressively. All three doctors said that with this type of cancer chemo and/or radiation don't always work. I am not the type of person that want to wait and see. I just want this out of me and go on. One of the doctors was from the Mayo clinic in arizona.

    Daisy
    I am really surprised. I was never offered that option. I am sure my doctors knew that I did not want to take any chances. The topic of surgery never was presented to me and I went to top rated hospital. I wonder why?
  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #48
    LaCh said:

    question for Marynb and others regarding sphincter control
    I just got off the phone with my gastroenterologist who, I swear, is an angel that fell off a cloud. But... here's the thing. She wanted me to have a surgeon lined up in case at the end of the chemo and radiation it was required. In other words, arrange it all now so that I wont have to then, and if he's not needed, great. So I have an appointment tomorrow. Here's my question. Was your tumor on the sphincter? Was it about 3 cm? In a way I hope so, because if you didn't lose sphincter control, despite those factors, there's a chance that I won't either. From what I umderstand, location and size are loosely predictive factors in losing or not losing bowel control. I know that you feel that incontinence is rare, but if you're irradiating the sphincter and surrounding tissue, is seems to me (and from what I've been told) that incontinence is actually not all that rare, nor is the need for a colostomy. So I guess what I'm asking is whether your tumor was near or on the sphincter, if it was around 3 cm and if, despite those factors, you didn't lose bowel control or need a colostomy. And even though everyone's different and every body responds differently, I'd like to know about others' experiences with treatment and incontinence. Thanks to all for your input.

    LaCh
    My tumor was larger than 3 cm and very near the sphincter, in fact it may have been partially in it. I had 30 radiation treatments and 2 round of chemo. I had diarrhea for awhile and sometimes didn't make it to the bathroom in time. I'm 18 months post treatment and doing pretty well - no incontinence and no surgery. I recently had a 6 month check up and tests were clear.
    Wishing you the best! I know it's overwhelming.

    Ann
  • LaCh
    LaCh Member Posts: 557
    #49
    AZANNIE said:

    LaCh
    My tumor was larger than 3 cm and very near the sphincter, in fact it may have been partially in it. I had 30 radiation treatments and 2 round of chemo. I had diarrhea for awhile and sometimes didn't make it to the bathroom in time. I'm 18 months post treatment and doing pretty well - no incontinence and no surgery. I recently had a 6 month check up and tests were clear.
    Wishing you the best! I know it's overwhelming.

    Ann

    Azannie
    This is good to know; your tumor size and location sound similar to mine and your outcome sounds good. Very good to know, thanks. I wouldn't say that I feel overwhelmed, just dealing with things as they come. Not scared but concerned, not depressed but not bubbling over with laughter, not anxious but concerned. As I mentioned a little earlier in another post, my concerns seem to reach a certain level, a crescendo of sorts and then sort of go away. That's not to say that they don't return; they do or sometimes they do but I don't seem able to maintain a constant, unrelenting level of worry, which is a good thing. I'm not like the Edvard Munch painting The Scream but neither am I like the guy in Mad Magazine asking "What? Me worry?" Thanks for your post; I found it quite helpful.
  • LaCh
    LaCh Member Posts: 557
    #50
    AZANNIE said:

    LaCh
    My tumor was larger than 3 cm and very near the sphincter, in fact it may have been partially in it. I had 30 radiation treatments and 2 round of chemo. I had diarrhea for awhile and sometimes didn't make it to the bathroom in time. I'm 18 months post treatment and doing pretty well - no incontinence and no surgery. I recently had a 6 month check up and tests were clear.
    Wishing you the best! I know it's overwhelming.

    Ann

    deleted, posted twice
    double posted, removed.
  • LaCh
    LaCh Member Posts: 557
    #51
    eihtak said:

    LaCh
    Hi, I hope I didn't add to your fears by telling you that I have a colostomy. It is rare that that is the case for most anal cancer treatments. By the time I was diagnosed my tumor was 5cm and I was severely anemiac. My Rb count was only 2 (should be in the area of 15) My doctor said he didn't feel I would survive chemo/rad without it, and we were (maybe still) hoping to reverse when recovered, but then I was diagnosed with breast cancer. Looking back, I should have gone in over a year before I did with the symptoms I was having, but life was happening and I just kept functioning as my tumor and overall health declined. ( That being said, my husband was having a bone marrow transplant and my mind was with him ) Anyway, the point I'm trying to make is that I was in such poor health to start with, you sound as though you are starting from a better place. My guess is you will get through this with no surgery and only short term control issues. Thinking of you and all who are beginning this journey.

    eihtak
    No, no, you didn't add to my fears. I really want to know about the gamut of experiences. I find the unknown more problematic than unpleasant knowns (do I sound like Rumsfeld with his Known Unknowns speech?). I'm sorry to hear about your extreme situation with your husband and you so sick at the same time and with not one cancer but two. It's always a bit mind boggling when you hear such stories and the life events that can combine to become like a giant wave at the ocean. You get knocked down, you get tossed around and hopefully, you get up and look back on it. I admire your strength. I'm humbled by your strength. For my part, I feel like this situation has the potential to bring out the best or the worst in me, and the choice is mine as to which one it is. Thank you for your post.
  • LaCh
    LaCh Member Posts: 557
    #52
    daisy62 said:

    Hello
    I am sorry to hear about your diagnosis. I guess it depends on the doctors as to what they suggest one should do. I opted for surgery, I had a colostomy 8 weeks ago along with two lymph nodes removed (showed active). After a discussion with my doc we decided to have all the lymph nodes on my right side from my groin to the middle of my thigh removed. Had surgery last Friday.

    Went for my post-op today, the results from the biopsy were back. Good news, one lymph node was beginning to show active (not the good news). The good news is that it worked out making the decision to remove all of the lymph nodes. At this point I go to the oncologist and determine how often I will need to be tested. No chemo or Radiation. I chose to go at this very aggressively, I went to 3 doctors to make sure I was making the right decision.

    God Bless,

    daisy

    daisy62
    Thanks for your comment daisy62. Sounds like your situation is a bit different than mine (I have no node involvment) but your story is helpful in showing the ways and reasons that someone might need a colostomy. I guess it's fair to say that there's the bell curve and that most fall inside it (in terms of common Dx, common treatment responses and side effects) and then there are others that fall outside the bell curve. All of it's helpful to know. Thanks.
  • mp327
    mp327 Member Posts: 4,440 Member
    #53
    daisy62 said:

    Hello
    I am sorry to hear about your diagnosis. I guess it depends on the doctors as to what they suggest one should do. I opted for surgery, I had a colostomy 8 weeks ago along with two lymph nodes removed (showed active). After a discussion with my doc we decided to have all the lymph nodes on my right side from my groin to the middle of my thigh removed. Had surgery last Friday.

    Went for my post-op today, the results from the biopsy were back. Good news, one lymph node was beginning to show active (not the good news). The good news is that it worked out making the decision to remove all of the lymph nodes. At this point I go to the oncologist and determine how often I will need to be tested. No chemo or Radiation. I chose to go at this very aggressively, I went to 3 doctors to make sure I was making the right decision.

    God Bless,

    daisy

    Hi daisy62
    I'm sorry your circumstances have brought you here and I'm glad you are recovering from your recent surgery and got good news. I'm glad you feel good about the decision to have the APR and I hope you remain cancer-free.
  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #54
    Looks like you've gotten
    Looks like you've gotten some very good advice. This is a great resource. I was diagnosed with stage 3 anal cancer in Feb. 2012 and underwent the same radiation and chemo treatment as others have discussed on this site. The chemo Dr. was very optimistic about my not needing surgery afterwards, although the radiation Dr. and colo-rectal surgeon thought I would have to have the surgery, since I had to stop the radiation early because of complications (low white cells, low red cells, low platelets, fever, c-diff.). They expected the tumor to be smaller but still there. BUT when I got checked in July, the cancer was GONE, all that remained was scar tissue. So after it was all over with, looking back, it was worth it. Everyone reacts differently so we all just have to take it one day at a time. I do hope you have someone to help you through this. I too have trouble sleeping, and did take a sleep aid during the rough times, because I was told your body heals during sleep and it is very important. I took Restoril which I was told is less addictive then Ambien. I did have issues for a while with extremely urgent and frequent bowel movements, which was very distressing to me, but that has improved drastically over time. I still have some issues with that, but find if I limit foods with lots of fiber (raw vegetables, cereals with granola)and fatty or fried foods, I don't have too much of a problem. I also have tight muscles and muscle pain in the groin, thigh and buttock areas, which my Drs. never warned me about, but from what I have read this is very common in people who have had pelvic radiation. I can live with that - it seems a small price to pay for killing that cancer..... LIFE IS GOOD, and you are correct, I do believe going through tough things makes us better people. God Bless you - keep your eyes on the prize during your treatment - being cancer free!!!

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