Recurrence

MARIE777 said:

Thank you for the info
MyHopen413 I really appreciate that information. My first suggestion was surgery when it showed up the second time, but the surgeon I went to was reluctant. I thought that would be a better way to get rid of it for sure. If this chemo does not work, I will pursue that again. I guess I need a general surgeon and I talked with a colon/rectal guy. It sounds like your treatment was more agressive than mine. God bless you too. Treatment can really take its toll. Stay healthy friend.

MARIE777 said:

Thank you for the info
MyHopen413 I really appreciate that information. My first suggestion was surgery when it showed up the second time, but the surgeon I went to was reluctant. I thought that would be a better way to get rid of it for sure. If this chemo does not work, I will pursue that again. I guess I need a general surgeon and I talked with a colon/rectal guy. It sounds like your treatment was more agressive than mine. God bless you too. Treatment can really take its toll. Stay healthy friend.

pjs62 said:

Marie,
I was diagnosed with
Marie,
I was diagnosed with anal cancer July 14, 2010 & went thru the 'usual' treatment of chemo & radiation. Then Oct. 2010 was told I was in remission. But the following Aug. I was so sick I ended up in the hospital for week. Well tests confirmed my anal cancer was recurrent & my doctor said no more chemo or radiation so APR surgery was my only chance to be rid of cancer. Long story short....I went for a 2nd opinion & found a much more caring supportive medical team. In Nov. 2011 I had surgery to remove the tumor. But my new doctors still weren't convinced the cancer was 100% gone since they seen some underlying bad cells & was worried may spread. So I did have the APR surgery with them (removed 1/2 my colon, rectum, spincter) & now have a permanent ostomy. Yes its a major life change but I'm getting healthier & adjusting.
I pray all goes well for you & the chemo takes care of things & its not too bad for you.

nonichol said:

marie
I hope your chemo treatment is going as well as possible. I understand the added financial fear when you are single. Please keep us updated.
Norma

YoungerSis62 said:

Confused because of Perm ostomy
I was first diagonosed with colon cancer in June 2011; had re-section to remove part of colon and was reattached. Follow up in December 2011 revealed more cancer cells; this time, further down toward rectum. I think I rushed into surgery (following opinion of same surgeon who performed 1st surgery, and my primary). Had the 2nd re-section, was re-attached, but told if it comes back, there would be no way around a permanent ostomy bag.
I had no oncologist to consult with before 2nd surgery; after 2nd surgery, referred to onc, I asked her if any chemo or radiation, she said no, they are positive they got it all (in retrospect, really arrogant, huh?).

So here I am, follow up end of June revealed malignant tumor right at incision site of 2nd surgery. This time my PCP refers me to Loyola Cancer Center (teaching hospital/cancer center). They reviewed all notes of 1st and 2nd surgeries and pathology, this onc/surgeon tells me this is rectal cancer, not colon cancer. He wants to do 6 weeks of chemo and radiation, wait 6 weeks, then do surgery. He is doing a flex sigmoscopy on me tomorrow because he wants to see the site for himself, and do another biopsy. He told me he will have a more education opinion on whether a permanent ostomy bag is needed.

I have a decision to make, and I am so lost. Do I just do the chemo and radiation and hold my breath and see if the therapy gets rid of all remaining cancer? Onc said that is one possibility for me, if I decide it. He is suggesting chemo/radiation AND surgery as a way of permanently ridding; he feels 6 months or 5 years down the road this will come back. (How do they know? How can they tell?) - I feel like throwing the dice because I am so fearful of permanent ostomy bag. The two surgeries were hell... I did not bounce back from the 2nd one as fast as the 1st - I am 61 years old - this is not easy to go through 8 hours of surgery - I was in ICU both times. I am riddled with adhesions from four abdominal surgeries in years past.

I hope to be able to communicate with someone who is living with a permanent ostomy bag (my onc referred to it as a "stoma") before I have to make this dreadful decision.

Marilyn

eihtak said:

Stoma
That would be me!!! Stoma is the word for the actual opening that the waste comes out of. I was diagnosed with Stage3B Anal Cancer about one and a half years ago. Because of the size and placement of the tumor my onc. and surgeon helped make the decision of having a colostomy even before starting chemo/rad treatment. The original plan was for it to be temporary and also keep me more comfortable during treatment....which it did. The radiation did a number on my pelvis and bottom and I have a lot of excess scar tissue, inflamation, and internal stenosis. They now feel the odds are stacked against me as to if I would have control at all if they did a reversal. I may be seeing a specialist in Milwaukee for one last opinion in a few months, but have pretty much come to terms with it as is. I had to kind of table things because about 4months ago was diagnosed with Breast Cancer and had a double mastectomy. The Estrogen blocking med I am on for that has really messed with my bowels. I will admit the whole colostomy thing was a learning experience, but as so many things are, truely becomes easier with time. Before the Breast Cancer I was to a point where if I followed a disciplined diet, kind of food and time, I was able to just cover the opening with a big square bandage for 4-6 hrs at a time and not even worry about it. Different medications do throw that off though. I wear looser longer shirts, and always carry cleaning/bag changing supplies, but have learned to manage. There are support groups both on line but in many areas in person too which I strongly suggest if you go that route. The hardest thing is that no one, absolutely no one, even a doctor, can not relate unless they live with one....thus the support groups. I would not want to sugar coat the whole thing, but also want people to know that its not as awful as you may think. Please keep in touch, and feel free to contact me with any questions. I will have you in my thoughts and prayers.

YoungerSis62 said:

Thank you eihtak for info
Thank you for your honesty, and for replying to my post. I had someone else, in the colorectal discussion boards, give me the name of a book, and I have downloaded and just started reading. It is "The Ostomy Book: Living comfortably with Colostomies, Ileostomies, and Urostomies", by Barbara Dorr Mullen and Kerry Anne McGinn. I have just started reading it, so can't tell you if it's going to help or not. But ANY information is better than NO information. The author has a colostmy herself.

This whole thing is surreal to me - I am only a Stage ONE for heaven's sake... but it's definately re-curring cancer. I was able to catch it very early (uh, like 3 times now). Tomorrow's sigmoidoscopy will hopefully give better news than what my previous surgeon "opinionated".

I just can't wrap my mind around what the onc and my PCP are trying to tell me - that this is deadly, and the stoma will lengthen my life. I don't feel sick!!!!!! (I guess the chemo and radiation will cure that though, huh)... < trying to make a joke >

Thank you everyone for replying and sharing.