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does anybody know...

LaCh
Posts: 509
Joined: Dec 2012

Does anybody know what secondary cancers result from pelvic radiation combined with mitomycin and 5FU, and what the incidences of those cancers are?  I think that leukemias are the most commonly occuring secondary cancers but I'm not sure and am seeking more concrete information. I'll ask my two oncologists but don't have much hope of getting a straight answer from either of them, and may also call the American Cancer Society, but if anyone has any information regarding this issue, I'd be interested to hear it.  Thanks in advance.

suzynanny
Posts: 36
Joined: Jun 2011

I don't know but would also like to know.

Marynb
Posts: 1134
Joined: Aug 2012

If they tell you that they can treat you now with the only known effective treatment, but there is a small chance that you may develop Leukemia in 20 years, would that change anything for you? Without the treatment, you will die of anal cancer in a year or two. I will take the 20 years and be grateful for them! We are blessed that they can halt anal cancer at all. I think we need to take one day at a time and not worry about something that may never happen. Someday, they may have better treatments.

suzynanny
Posts: 36
Joined: Jun 2011

You are so right. I was told without treatments it would be death.

LaCh
Posts: 509
Joined: Dec 2012

I'm like you and feel that the more information that I have, the better able I am to make informed decisions about my body and my future. Gratitude or a lack of gratitude aren't factors (at leat not for me) in seeking information.  I try to balance the "take-it-a-day-at-a-time" philosophy with "and let me know the lay of the land so that I can be prepared, should I need to be," philosophy. I don't think that dealing with what's laid at my feet today, and understanding all the ramifications of choices made today with what the future may hold, are mutually exclusive. But these are my choices and philosophies and I respect that others' may differ from mine. 

For any who may be interested, I can tell you what I learned from a very kind and helpful nurse at the American Cancer Society. First, the data on secondary cancers related to treatment for anal cancer is scarce because anal cancer isn't a common cancer, so the data base from which  to draw isn't very large. That said, one can extrapolate (to a point) from other cancers that commonly irradiate the pelvic area.  Men's cancers include prostate, and bladder cancer for both genders. The latency period (that most on this website already know) is 5-15 years, after which the incidence of secondary cancers doesn't disappear but markedly decreases.  In a study spanning the years from 1973 to 2005, pelvic irradiation for vulvar, cervical, anal and rectal cancers showed an increase in acute leukemias of 72%. That statistic is readily available from the Internet but it's an incomplete stat because it doesn't tell you what the incidence is for the general public, in other words, 72% of what?  .001%.  50%?  It doesn't say.  The nurse was able to research it and evidently, the incidence to the general (non irradiated) public of developing an acute leukemia is 1.72% so an increased risk of 72% for those with pelvic irradiation ends up being around 7%.  Also, keep in mind that the study was started before IMRT was widely used, but statistics from those years were included in the study.  Secondary solid tumors to ovaries, cervix and uterus aren't available because those organs were usually surgically removed as part of the treatment that irradiated them for cancer occuring in those organs.  This is something that those who choose to consider these questions, might want to ask their oncologist at some point.  Is there a risk of developing a secondary solid tumor to the cervix, ovaries or uterus and what is the risk/benefit ratio in doing something prophalactically?  Those are personal issues that each person must decide for themselves. Obviously, for men, these issues don't apply.  Personally, if I were considering such questions, I'd want to know the liklihood of developing a solid tumor in any of those organs and consider  the ramifications , both positive and negative, of surgey, to pre-emptively remove those organs and whether surgery in one's 50's or 60's is preferable to surgery in one's 60's or 70's.  These are questions that I might ask, but of course, each person must do what they feel is in their best interests.  There aren't easy answers and each person must be guided by whatever factors they rely upon in their decision-making process, whether intuition, logic, family, faith or anything else. 

In terms of late onset bone changes, the latency period is 10-15 years post treatment with an increase in hip fractures, some spontaneous, some from falls and some from light trauma that ordinarily wouldn't result in a fracture. Some are hairline fractures to the femoral head that can be treated conservatively (your hip is a ball-like bone that fits into a cup-like "holder" in the pelvis and that ball-like femoral head is attached to your femur, the bone of your thigh, by something called the femoral neck and that's the part that can crack or break).  Baseline  bone density studies (pre or immediately post iradiation) are useful and recommended. The recommendations to mitigate some of those effects are what you'd expect, excercise, calcium supplementation and dietary considerations.   That was according to the ACS nurse but I've recently read that there are indications that calcium supplements raise the risk of heart attack so it bears investigation for those who feel it prudent.  It's always, it seems, a risk/benefit assessment, but I suppose that that's true about most things in life, and that the only difference is that the stakes are higher in this situation, whether it's questions of treatments chosen today or those chosen for post-today, if you know what I mean.  

I hope that for those with questions about the long-term effects of choices made today have found this information useful.  As I said, it came from a very kind and helpful nurse at the American Cancer Society which I called because, when I asked my radio oncologist, his response, given with a sort of dismissive wave of the hand was "if anything happens it won't happen for 20 years," which wasn't what I asked him (he ansered a question related to time, which wasn't my question) and was quite unhelpful and uninformative.  I was seeking information.  I got it from the nurse at the American Cancer Society. 

For those who don't want this information, I apologize in advance for posting it here and hope that you may understand my reasons for doing so.

suzynanny
Posts: 36
Joined: Jun 2011

Thanks for the information.

eihtak
Posts: 818
Joined: Oct 2011

Thanks, I welcome all information. Like you I like to know what may, and realize its only a may, happen in the future. I like to be prepared for all possibilities, but try to be flexable when life throws that curve ball. I am meeting with a specialist next month to discuss the benefit/risk in my case of having a hysterectomy. Along with treatment for anal cancer, last spring I was treated for breast cancer. My mom died from ovarion cancer and her mother from pelvic cancer of unknown origin??? I have had genetic testing for the mutated BRAC gene relating breast and ovarion cancer and although I do not carry it, I am still at a higher risk for another pelvic cancer. The radiation has caused a great deal of stenosis so surgery would have to be done roboticly. I also already have a colostomy and surgery comes with a risk of bladder issues that could (only could) result in a urostomy (bag for urine). I am truely hoping I can make a well informed decision with the help of this doctor, I will gather as much info as possible, but then will have to rely on my faith to help me do whats best for me.

Years ago I was driving in crazy busy traffic with my teenage daughter, my car was old and not all too trustworthy, my nerves were shot and I was panicing. She said, "mom. sometimes you just have to step on the gas, say a quick prayer, get in the left lane and go, and don't look in the rearview mirror so much"!! I have used that advice many times over the years.

I will keep you posted on what I learn.

LaCh
Posts: 509
Joined: Dec 2012

Dear eihtak,

I find your post moving and thought-provoking. Like you, I feel that I need to, at the very least, be aware of all the possibilities so that I may prepare for them in a thoughtful, calm, well-informed way. I salute you for what you've been through and the fortitude that you show, and admire your practical approach.  Facts don't undermine faith, nor does preparation for all possibilities weaken hope for a good outcome.  The elective hysterectomy that you speak of was exactly what I had in mind for those who have those concerns when I went in search of the information that I found. We all have our individual styles of dealing with what comes our way.  My way won't work for the next person nor will their way work for someone else.  That said, I'm not very good at closing my eyes to all possibilities but rather, prefer to have an idea of what they might be so that I can at least have a plan in place should they arise, knowing that my preparations may never be required (and hopefully won't be required).  Knowledge is power and facts are one's friends.  As for your daughter's take on it... I love it. Funny, true and very well said.  Pearls of wisdom often tumble from the mouths of babes.  My very best wishes for you in all that you do.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

ok.. a lot of times i do not respond because i had a horrible time with tx and do not want to discourage anyone... my team of docs ( md anderson)  said that the tx for anal cancer is barbaric but it is all we have ... so here i am 3.5 years after tx and still healing or not healing due to radiation damage.    my reality  was that i saw  thousands of people being treated every day.  so many  children with their sweet swollen faces and bodies ( their caretakers worn out but trying to smile) kept me knowing that i had nothing to complain about because i had lived a life---- they had not.  as bad as chemo is, supposedly in about a year it leaves the body.... but radiation destroys tissue and causes many problems.... and can cause cancers to come back or new ones to form. ( yes, i know that some chemos do that also)...  i have osteoporosis that MD anderson is treating me for with Reclast ....i had bone densities before tx and after...  the radiation made me go into osteoporosis.   who knows what it will do to all my female organs... i also have chronic inflammation, redness, and pain on the left side of anus  but we are watching it.  i hurt every day with BM's... but i am still having them so i am grateful for that.  soooooooo  you have to decide if the side effects and the unknowns are worth the trouble, pain, and etc.    sephie

LaCh
Posts: 509
Joined: Dec 2012

I'm in 100% agreement with you.  I question every day what it is that I'm doing to my body, what I'm gaining and what I'm losing and it isn't at all clear to me.  Quality of life vs. quantity of life is of paramount importance to me and something that I factor into the decisions that I make. Your story is sobering, although not suprising.  If one removes the technology that we have (we're great at technology) then in reality, it seems to me that we still practice 19th century medicine. We have three tools in the toolbox of medicine, surgery, drugs and radiation.  They all leave the patient with collateral damage.  Why has this status quo been with us through the centuries?  Why is research focused on these three damaging and invasive modalities?  Why is collateral damage acceptable and who gets to decide that?  Why is curing a tumor at all costs something that a doctor might consider a victory while a patient is left with lifelong, life-altering issues that speak to quality of life?   I don't know the answers to these questions.  All I know is that I have grave concerns and many doubts about the course that I've chosen and am not at all clear that the choice that I've made will serve me well in the long run.  Cure the tumor?   Hopefully.  More than that?  Probably. Will I be happy with the choice that I made or will I regret it?  I don't know. Time will tell.

In terms of your reluctance to add to the discussion for fear of discouraging others, I think that you might find that more people than you realize share your concerns and experiences and that not talking about them doesn't change that.  Speaking only for myself, I appreciate hearing about the problem-free outcomes (if there are such things) as well as those that left the person with life-altering collateral damage.  I want to hear both sides and I thank you for your post. 

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