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Speaking of Tamoxifen, what about Pelvic Radiation?

RoseyR
Posts: 462
Joined: Feb 2011

Have been following the posts about that double-edged sword, Tamoxifen. Sure, it may delay recurrence of certain breast cancers, perhaps even prevent recurrences, but it's also associated with higher than usual risk not merely of uterine cancer, but of the most aggressive of them, including carcinosarcoma (MMMT) and papillary serous. Given that statistical correlation, prophylactic hysterectomy should be an option COVERED BY INSURANCE for those who have been advised to take this drug for more than a year or two.

Likewise, ladies, do any of you feel pause about the irony that although pelvic radiation is said to delay recurrence of our uterine cancers, it is also shown in many studies to CAUSE uterine cancer? (Nearly thirty percent of those diagnosed with carcinosarcoma of the uterus had received some kind of pelvic radiation years prior.) Does this correlation make any of us nervous? Or are we demanding the stats that show what happens in our given kind of cancer with NO radiation (perhaps just chemo) versus 25-30 pelvic radiation treatments?

Sorry to call attention to such ominous inversions (alleged cures versus causes of further disease), but do they not suggest we need to keep demanding more research--and confronting our oncs with harder questions?

Rosey

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I've not heard this "double-edged sword". When we're first diagnosed (I have MMMT as you do) we tend to follow what our docs suggest for treatments, with hopes of getting on with life...but not always true. As with all treatments and/or drugs there are always "side affects" that we don't hear about. My doc for one after treatments hearing me explain about my lower back pain...what is it doc? Told me that since I just had my follow-up appt, etc, it showed no cancer, so go with assumption I'm getting older and this is start of arthritis. As I did more and more resarch, come to find so much of any pelvic radiation which I had, cause bones and tendons to dry up....start of pain and yes to arthritis. But...he didn't explain this in any way.

Where did you find this reasearch as love to review it and keep myself updated??? All we can do at this point, after treatments are over, be more aware of what we're told by our docs for treatments, etc. We always need to be one step ahead of them. Just because they spend 12 years in school to become a doctor, doesn't mean they know it all.

One area I don't really rely on, statistics.....many are so skewed. REMEMBER --

~~~ WE'RE A STATISTIC OF ONE ~~~

Jan

RoseyR
Posts: 462
Joined: Feb 2011

Jan

I agree with you that stats are just that--and none of us is doomed to become a typical stat; we are all different, with different genes, immune systems, strengths and vulnerabilities.

But it WAS a bit discomfiting to read in some clinical articles (I will try to find them; perhaps they are a bit old) that nearly a third of those diagnosed with carcinosarcoma had received prior pelvic radiation. (For what, I can't imagine, but that's what the articles stated.)

Even if those stats are reliable, more recent studies do confirm that radiation treatments at the least delay recurrence of uterine cancer, even the most aggressive forms. We all know they do little to prolong overall survival; what they allegedly do is reduce the chances of local (pelvic) recurrence. I am willing to accept that fact; M.D. Anderson studies confirm it.

But it does seem unnerving to know that pelvic radiation can cause later uterine cancer. Perhaps it takes 10-15 years for it to develop and that's why it's worth having to prevent or delay serious aggressive uterine cancers. (Most of us would be thrilled to have ten to fifteen good years, right?)

I just think we should hit our oncs with these "contradictions" and let them know we expect them to urge more research.

Btw: you are one of my favorites on this board: smart, spunky, attractive, and positive despite your diagnosis; you are clearly doing all the right things!

Love,
Rosey

cleo
Posts: 122
Joined: Sep 2009

Rosey I don't talk treatment usually as I do not live in the states but your research interested me and deserves comment. I was diagnosed MMMT 3/4 and had only radiotherapy x 30, completed Nov 2007. I was told that any necessary chemo would be severe, aggressive and I would need to be hospitalised so I watch this board with interest re the chemo options. This site is my only research centre
No previous radio. I have slight L leg lymphedema as a result of lymph gland removal but as yet [fingers crossed] have no body aches/pains and I am no spring chicken! I now have a yearly CT scan and the last - of two weeks ago - shows no change from 07.
Celia

RoseyR
Posts: 462
Joined: Feb 2011

Cleo,

You say you were dignosed 3/4--is that a date or a stage of cancer? I would like to know when you were diagnosed and at what stage.

If you've had only radiotherapy (is that the same as radiation? and was it just external pelvic radiation or also vaginal brachytherapy?) in 2007 and are still NED (or stable with MMMT since 2007) that is truly fabulous.

Have you been doing anything special in terms of nutrition or supplements?

All of us with this aggressive tumor would be comforted to know what YOU have done to gain such a long remission.

Best,
Rosey

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I was wanting to ask the same questions to Cleo that Rosey posted. I think both of you and I have MMMT, as mine is stage 3C, diagnosed 1/09...6 rounds chemo, sandwiched in middle external pelvic radiation 33 rounds. Since post treatments NED.

Are either of you on the yahoo boards for MMMT cancer? I am and can tell you quite a few are NED for 5+ years...amazing! There's hope for all of us. We should keep in touch as nice to have others on this site with our aggressive cancer.

You know our cancer is also similar with ovarian cancer...might have some support on that part of CSN site...give it a whirl!

Best to both of you lovely ladies...
Jan

RoseyR
Posts: 462
Joined: Feb 2011

Jan,

I went onto Yahoo's site half a year ago but found most of the posts less informative than the ones we find on this Board. (Seemed mostly to be posts about birthdays, family emotions, rather than latest treatments or findings.) Perhaps the site has improved in recent months?

Most of all, however, am delighted to hear you report that there ARE some who are NED after five years. (Some of the clinical articles I read early on a year ago suggested that only thirty percent of those initially diagnosed with our tumor are still alive in five years; perhaps they're now having a bit more success?)

Thanks for the info, whatever the case.

Rosey

cleo
Posts: 122
Joined: Sep 2009

Clarification. Diagnosed August 2007 MMMT with pelvic & para-aortic lymph node & bladder metatasis. Made me Stage 111/1V. Surgery August. External pelvic radiotherapy Sept/Nov 2007. As of now NED [The peace of mind never returns though!!] I now have yearly smear tests and CT scans. 6 monthly CA125 bloods.
Have always tried to maintain a healthy diet..I don't eat meat but have made the effort to up the good 'coloured' fruit and veges. I take 400 mg Lipoic Acid daily having read on this site that it can be beneficial. I haven't done anything too different..just got angry and determined to win this one!!
Celia

RoseyR
Posts: 462
Joined: Feb 2011

Celia,

Am so impressed with your NED status that want to ask just a few more questions.

Do you ever eat any kind of cheese--or anything resembling sugar? (I have had some sandwiches with whole grain bread, goat's cheese, and real figs (no added sugar) lately but wonder if I should avoid even figs.

Do you eat bread of any kind? And how about coffee? (I drink mostly green tea but lately am allowing ONE cup of Americano each morning; it has less caffeine than regular coffee.)

Finally: Are you taking no other supplements beyond alpha lipoic acid? No fish oil or Vitamin E?

Best,
Rosey

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

So appreciate your kind words. I try to always research and stay up on what can help me keep the cancer away...sure is challenging!! I have learned so much from others on this site and try to pass it on...we're sorta like a team holding hands to meet our goal. Nice to have partners during our long journey isn't it?

Sure does seem unnerving that pelvic radiation can cause uterine cancer later. I was told to have the radiation to really zap the 1 lymph node that was diagnosed with cancer. Will tell you the radiation really put a damper on my lower back and hip area. I've had some pain and sciatica nerve damage. It's somewhat stable now as see a chiropractor regularly. I refuse to ever have surgery, but unfortunately my running days are over.

My oncologist for chemo is my main doc who handles my follow up appts, and happy to speak about this in January on next appt. Be interesting to get his response.

Best to you my friend,
Jan

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dear Jan

Your comment reminded me of what I often say about myself since I got on the cancer road finding my way back to health:

"I'm an uncontrolled experiment where N = 1."

I am trying so many different anti-cancer approaches, I have no idea WHAT is helping. All I know is something must be working because there's no way I could have stayed off chemo this long judging how aggressive my papillary serous ovarian cancer was at the onset & post-op last year. Maybe I am maximizing on the placebo effect--who knows?

Rosey, maybe the "prior pelvic radiation" was a CT scan for something Iike abdominal/pelvic pain or trauma.

RoseyR
Posts: 462
Joined: Feb 2011

DEAR CAROLENK,

I love your posts; they are so well informed and well written.

I suspect you may be right about the "prior radiation" as a cause of uterine cancer: it may well have been scans.

And perhaps that explains why--to my vast relief--my onc is not performing scans on me in the first year after completion of treatment "unless you have symptoms." Maybe they've finally awakened to realize that so much radiation exposure--unless absolutely necessary--is more harmful than helpful.

As for your own continued resistance to recurrence, I doubt it is merely the placebo effect: I can tell you're really smart, well informed, and up on whatever you can do to sustain remission.

For example, you're the only respondent who was at all amenable to my suggestion that LDN might be of help--not in curing our conditions, but gaining longer remissions.

At some other time, I would love to know exactly what you've done since diagnosis to gain this enviable state of freedom from further recurrence. Perhaps it's posted somewhere here that I could refer to?

Best,
Rosey

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

Highly respected onco today told me that chemo in my case would serve no real purpose and only make my life horrible - but that some radiation, not necessarily as much as 25 shots as previously recommended - would be good. Now, reading your input, sounds as though pelvic radiation still leaves you with back and/or hip problems, and arthritis. Is this researched? Is it real? I quote: 'My doc for one after treatments hearing me explain about my lower back pain...what is it doc? Told me that since I just had my follow-up appt, etc, it showed no cancer, so go with assumption I'm getting older and this is start of arthritis. As I did more and more resarch, come to find so much of any pelvic radiation which I had, cause bones and tendons to dry up....start of pain and yes to arthritis. But...he didn't explain this in any way.' - I had one opinion to leave it all alone, given that I am not the sort to worry it to death, but today's onc. view I think I have to accept. What does everyone think? BTW - I have already had one hip replaced and seem to have arthritis tendency already - fingers, thumb, other hip, etc.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Well ladies, always happy to read about your success stories and I hope one day that I will be able to join you with a long term NED status myself. I’m currently going through radiation right now, 10 sessions down fifteen to go plus a few rounds of brachytherapy. I’m stage 2 or 3 (never sampled any lymph nodes), high grade MMMT and never had any other forms of radiation prior to this diagnosis and no history of cancer in the family.

I know I might be singing a different tune at some point, but right now at age 47, I just want to live long enough to get cancer from the radiation I'm getting now. Does that sound weird? Need I ask. ;o)

Take care,
Cindy

JoAnnDK
Posts: 276
Joined: Jun 2011

You wrote "I know I might be singing a different tune at some point, but right now at age 47, I just want to live long enough to get cancer from the radiation I'm getting now. Does that sound weird? Need I ask. ;o)"

I hear you...and feel the same way!!! And I am a lot older than you.

JoAnn

RoseyR
Posts: 462
Joined: Feb 2011

Cindy,

Even IF pelvic radiation could cause pelvic cancer ten to fifteen years later, I agree with your wry concession that you'd like to live long enough for that effect to occur! Yes, ten years of NED (or even life with one recurrence) would be welcome given the often more gloomy prognosis for our kind of tumor!

Love,
Rosey

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