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Recurrence

MARIE777
Posts: 4
Joined: Jul 2012

Hi Everyone,
I am new to this but it is nice to say I have anal cancer and not be embarrassed. I was diagnosed Sept 1, 2011 with stage III 4cm tumor with lymph nodes affected. Went thru the 6-8 weeks of chemoradiation with Mitomycin and 5FU and 28 radiation treatments, hospital stay and all. I finished in Nov and was clear. My PET this May revealed cancer in my right groin lymph node (everything else clear), confirmed by a biopsy, so tomorrow I go thru chemo again for 6 weeks. This time Cisplatin and 5FU. I refused anymore radiation because of the damage. Has anyone on this board had a recurrence, chemo then cleared? I need to keep my job and life going as a single woman, so I get anxious every time I get hit with cancer again. Any info is appreciated. And bless you all and continue to stay healthy and fight this disease.

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

I'm very sorry to hear that your cancer has shown up in a lymph node. I hope your chemo treatment will go well and I wish you minimal side effects. I cannot answer your question as to whether or not there is anyone on this board who has had a recurrence such as this cleared by chemo alone. Perhaps our other posters will chime in. I wish you the very best with your treatment and hope you'll keep us posted on how things are going.

eihtak
Posts: 826
Joined: Oct 2011

Welcome, and so sorry about your situation. I was diagnosed in Jan. 2011 with Stage3B Anal Cancer with left side pelvic lymph node involvement. I also had the protocal chemo/rad treatment. Unfortunately I too got very ill and was hospitalized and nursing home for a few months. I am left with a manageable but annoying at times colostomy. At my PET scan in Feb. 2012 I was NED on the Anal Cancer but diagnosed with Secretory Carcinoma of the Breast and in March had a double mastectomy. Tomorrow I get the results from a CT scan on both chest and pelvis, so am anxious about the results. Although as of today, I don't have experience with an Anal Cancer recurrence, I do know the feeling of a second cancer diagnoses. You may need to dig a bit deeper for strength to get through the rough days, but it is there. I met a woman who is a 5 time cancer survivor. She is doing well, and a true inspiration for all who know her, but also living proof that with a combination of medicine, nutrition, determination, and prayer we all can have a shot at beating this. I will keep you in my prayers for a smooth and successful treatment, and that you soon continue to move forward in your life with/after cancer. Please keep in touch to let us know how you are doing.

eihtak
Posts: 826
Joined: Oct 2011

I forgot to mention that a while back when I asked my doc how he would handle a recurrence, he said he would feel confident with chemo and surgery. I had lymph nodes removed with my mastectomy, so was wondering if that is an option in the groin??? I am curious now so going to do some checking. Thinking of you!

MARIE777
Posts: 4
Joined: Jul 2012

First eihtak, I am so very sorry about your diagnosis and what you have had to go thru. May you stay in remission. I just finished my first day of my second round of chemo, and actually enjoyed talking with folks during my 4 hours there. Then I was sent home with the party ball, and back tomorrow for another 4 hours. No problems yet, and even had an appetite to come home and fix dinner, but it is early in the process. Surgery was discussed in my case, but the surgeon said it did not make sense to go after 1 affected lymph node and that others may be infected that we can't see yet. So we decided on chemo this round. If this does not work.....well back to the drawing board. Anal cancer is one of the rare cancers that can be treated without surgery. The surgery sounded like an awful recovery. I will keep you all updated. thanks again....and take good care.

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

Wishing you all good news tomorrow on your results!

MyHopen413
Posts: 38
Joined: Mar 2012

I too was stage III and had radiation and the F5U and Mytomicin. My first set of follow-up tests showed cancer in a lymph node close to my ileac in my abdomen. I had that lymph node removed. Then I had 8 more rounds of Taxodere, Cisplatin and F5U. I also had radiation again because it was in a different area. It was hard. My last two sets of tests, one in the middle of my second round of treatment and one after treatment was over have been clear. My CT scans show nothing, my tumor markers are normal and my colonoscopy showed no cancer at all. Hang in there. I finished my last chemo March 27th and last radiation April 3rd and I am back to work full time. I still have digestive issues and don't have all my strength back, but I feel like I am on the road to recovery. May God bless you with strength and wise doctors.

MARIE777
Posts: 4
Joined: Jul 2012

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.

z's picture
z
Posts: 1249
Joined: May 2009

Marie, I am sorry about the recurrence, if there's any good news its that anything that arises is caught early due to having follow up scans. I completed tx for anal cancer on 6-30-09, and because of follow up scans a 2nd primary lung cancer was found and I had surgery on 9-23-10, and so far so good. I was a 35 year smoker before the anal cancer tx began I quit.

There is a poster here that had the cisplatin and 5fu for the initial tx and she had lymph node involvement, and she was treated by Dr. Eng at MD Anderson, and she is doing fine. Hopefully she will chime in.

The RCA (rare cancer alliance) web site, has many anal cancer survivors of all stages, you might want to visit this site, there's a lot of information there.

I wish you well and keep us posted. Lori

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Marie and Myhopen wishing u the best!

MyHopen413
Posts: 38
Joined: Mar 2012

I want you to know that I have thought about you a lot since I first answered your post. It sounds like you are still in the midst of a lot of decisions and tests. I understand your dread of an ostomy, that was my greatest fear also. I hope you can get enough information from your doctor(s) so that you can make a decision that makes you comfortable and gives you hope.
God Bless

Diane

mxperry220
Posts: 360
Joined: Mar 2011

I was diagnosed with Stage 2 anal cancer in 2008. My internist advised me that if there was a recurrence chemo would be used to treat cancer. He said I had all the radiation I could have in my anal area. I had 30 rounds of radiation.
Mike

pjs62
Posts: 95
Joined: Sep 2011

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.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I had Stage IIIa, 2.5cm tumor with two small lymph node spots. Treated at MD Anderson by Dr. Eng. I was treated aggressively because of the lymph node spots. Had 5FU and Cisplatin and the 7 weeks of radiation. Since I had maximum radiation I was told that if there was a recurrence I could not receive anymore radiation in that area so APR would be the next step and the permanent ostomy. Fortunately that was 3 years ago (diagonsed in July 2009) and finished treatment in Sept 2009 and all is still well.

Cisplatin was tolerable. I took my anti nausea meds and although I was queasy at times and things tasted bad that was the worst of it. No mouth sores and no reaction.

You mentioned that you didn't want anymore radiation, which is understandable. I just question how much radiation you recieved the first time since I didn't think they could do more radiation. Some doctors use Mito, some use Cisplatin, Dr. Eng uses Cisplatin because she feels it is not as toxic but just as effective. I know it is used for mets as well.

I'm not a doctor or course, but I do wonder if those lymph nodes were there the first time and not a recurrence. Did you ask if your lymph nodes were radiated the first time? Just a thought.

Wishing you strength and healing,
Liz

YoungerSis62's picture
YoungerSis62
Posts: 28
Joined: Jul 2012

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
Posts: 826
Joined: Oct 2011

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's picture
YoungerSis62
Posts: 28
Joined: Jul 2012

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.

sandysp's picture
sandysp
Posts: 771
Joined: May 2011

You are not alone. A lot of us were advised to have surgery right away by trusted physicians. Myself included. I was stage 3a (2tN1MO) and a year later have not needed it. We are talking anal cancer here, though, not rectal - or I guess mine was anal rectal, not the other way around. Squamous cell invasive anal cancer.

More tests in the coming months and we will see if I will need surgery or not. A great surgeon is probably sharpening his scapel as we speak - lol.

Good for you for getting more information. It seems most people get along quite well. Sorry you have gone through all this, but I find there is some good that comes out of everything, even if that seems impossible to me.

Fondly,

Sandy

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

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

Angela_K
Posts: 374
Joined: Jan 2011

. . .who so openly share your experiences for others to grasp as we muddle through trying to find support for our greatest fears whether they're real or imaginary. You are all an inspiration. I am no longer afraid, and in part, that has much to do with the interaction on this site.

God bless you all.
Amgela

sandysp's picture
sandysp
Posts: 771
Joined: May 2011

You have a way of expressing the inexpressible, Angela. Thanks.

torrance
Posts: 118
Joined: Jan 2012

So true that our own experience paves the way for others. Like stated, unless it comes from someone with that experience, you should question things. Each journey is soooo different and yet the same. I am learning that the location of my tumor, very near the outside and the fact that I have extremely fair skin has its own set of complications. I am dealing with a bit of fecal incontinence and a hemoroid that will not heal. I never had to deal with them before, but due to radiation damage I have to strain to pass stool. Doesn't matter the size of softness. It reaches a certain point and then just stops, even though the incontinence and urgency is there! Go figure! Rad Onc says no to surgery on the hem as the tissue would never heal. So some how need to learn to live with this or face a colostomy. I think one of the major lessons learned is that ON THE OTHER SIDE OF FEAR IS FREEDOM! So I wish freedom to all of that have gone through this, because I think we are never through it, it is a continum in our lives. Love to all of you as I head to the rad onc for my two month anoscope!

Joanne

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

I wish you the very best with anoscope. I have had bouts of this same problem--stools that will not pass. I wish I had some good advice for you, other than the usual--fiber, lots of water, exercise. It is strange how this will happen and last for awhile then resolve itself.

AZANNIE
Posts: 375
Joined: Mar 2011

I know the "stuck in the chute" feeling. I'm over a year post treatment and still have issues at times. Good luck with the anoscope. I'm glad my colorectal dr does mine because I wasn't thrilled with my rad onc.

Ann

torrance
Posts: 118
Joined: Jan 2012

So I had my appt with my rad onc on Monday. All is good on the cancer front. My "passing" problem seems to be caused by scar tissue very near the opening. When I did the prep enema...OMG so painful! The applicator felt like it was a knife cutting me open, in fact it cut/scraped something as I had some bleeding. "Lucky" for me my rad onc uses a ped scope. Still was very painful this time. For next appt I can skip the enemas and just use a laxative the night before, no experience with these. I also started "anal dilation" to try and help the scar tissue to give a little. A scary line as we don't want to cause any tearing or stretch to a point to aggravate the incontinence issues. What a tight rope we walk! Good news, next appt is four months out instead of two. I also get to have another PET scan in three months. I continue with my vaginal physical therapy. Have had to taper off a tad as the tissue rips and bleeds with the slightest stretch, so need to maintain what I have gotten, let the tissue try and heal before proceeding. Thank you all for letting me share all this, and that you get it. Others just kinda nod their heads in complete disbelief, like I probably would have a year and a half ago! YOU ARE THE BEST, I wish I could each of you a hug.

Joanne

eihtak
Posts: 826
Joined: Oct 2011

I was recently at a graduation party and telling some adults, one a thyroid cancer survivor, about some of the issues we have to deal with. I wish I had vidio taped their faces of disbelief. Almost no response, just that look of wonderment, loss for words and fear that at any time it could be them. Hopefully all who are due for check-ups make that call, and that I have educated one more person on symptoms to be checked out. Congrats on your good report, and continued luck on recovery, remember ours is a long slow process and requires so much patience. As always, all in my prayers!

sandysp's picture
sandysp
Posts: 771
Joined: May 2011

I just read this. I am so sorry to hear you went through all this. You have been a tremendous support to me. I would love to give YOU a hug.

Hope all is much improved now.

Fondly, Sandy

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

soooo sorry for the tearing of tissue. That exact problem is what keeps me from being normal for my hubby. and believe it or not, even tho they try to, the docs at MD Anderson really do not understand about my hesitation and fear ... I tell them that it takes so long to heal if you tear the vaginal and/or the anal tissue and it is a painful process... the docs are male and they listen and write it down ... i hope that it will bring more understanding for the next victims of this cancer. not everyone has this but for us that do, it is horrible. hugs to you , joanne , and to all. sephie

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