POST RADIATION PROBLEMS HIP AND PELVIC BONE DAMAGE

From the latest NCCN Guidelines for Anal Carcinoma:

"In addition, results from a retrospective cohort study of data from the SEER registry showed the risk of subsequent pelvic fracture to be 3-fold higher in older women undergoing RT for anal cancer compared with older women with anal cancer who did not receive RT" (p. 28 of the pdf)

This is one of the aspeects of radiationtherapy that worries me the most, since my pelvis is already -2.5 on dexa scan (considered osteoporotic in presence of compressino fractures).

kim

I believe that we ... as patients of these doctors at the cancer treatment hospitals have every right to the appropriate information regarding not only the treatment and possible side effects... but also for the long term effects that will likely will confront us down the road.  When you read the people on this bulletin board and ... realizing that most people undergoing these treatments have no interest or have not found CSN or feel too unwell to even bother with this forum... None of the mis-information or lack of information is okay.  We need to let our doctors know ... and the AMA and Oncology boards and other professional cancer groups that this MUST be repaired.  

The first thing my gastroenterologist said to me after saying that "there is only ONE way to treat this"... was Don't go reading on the internet!!!  Well, my scientific and medical background allows me to easily read the professional side papers, studies, journals, and it is absolutely mind blowing the information that is out there that my gastroenterologist and the doctor that performed the advanced mammograms do not know and do not acknowledge.  

I not only read numerous articles on a daily basis... I also print them out and provide them to my radiation oncologist and primary care physician... again so they can see where I am coming from and I am quite sure they do not have the time to hunt down and read all of this... so I help them... so they can help us and prayerfully ... they will come up with less harmful treatments with a LOT less damage to our cells, tissues, entire bodies.  Again, even though my rad. onc. knows I am not taking radiation ... he is the one that continues to work with me along with my primary for palliative care and anything else I need along the way.

I am approaching one year post-diagnosis ... have had NO chemo... NO radiation... Still have enough energy to travel Florida for my work on microscopes, help take care of my Mom, work in my shop, go shopping and pretty much everything... I just have to carry a stupid diaper bag so I can cleanup whenever necessary.  Returning to NJ shortly for consults and check my bloodwork and I am asking for a follow up pet scan to see where I stand now.  

None of the doctors know what will happen with me and I am unwilling to sacrifice my body to their continued studies of what works best... The pathologists that I work for and I all agree that the radiation "treatments" cause entirely TOO MUCH collateral damage.  ... and I have not found ONE doctor that I know that would submit to RT because of what they know.

Like I recommend to everyone... Do your homework... ask a million questions... if any of the health care professionals get mad at you that is a bad sign about their open-mindedness and consideration of what it is like to be diagnosed with cancer.  YOU have to be comfortable with your decisions and more knowledge = better decisions on your part.

None of them know everything.  I was even reading yesterday that when they come off being an intern... they go from four patients daily to care for to TEN!!!  Talk about stressed out and no time to breath!  But I must tell you .. .. my younger doctors are way more in tune with my thinking than the older ones set in their ways.

I know that high patient volume helps them to see more and hopefully learn more as they go (remember they are "practicing" medicine).

I know that the average hospital / cancer treatment center must stick with "standard protocol" to maintain "risk management" (also known as LIABILITY).

I know that the surgeons must keep the OR's scheduled or they lose their priveleges.  I know that the nurses are understaffed (THIS IS ABSOLUTELY UNFORGIVEABLE).  I know that the CNA's are also understaffed and underpaid AND typically under-trained.  

I have learned SO MUCH in my sixty years and I just want to see the health care industry take a step back from the pharmaceutical influence and they must improve bedside manner and better patient care in each hospital.

Even at Memorial Sloan Kettering... they report four areas of serious medical mistakes.  That's a whole other area that you should research about where you are submitting yourself for care.

So... all of that said... 

I send the powers of healing and positive energies and extra prayers to all suffering people.

Moxie

Msmoxie said:

Doctors must know more and must be required to discuss

I believe that we ... as patients of these doctors at the cancer treatment hospitals have every right to the appropriate information regarding not only the treatment and possible side effects... but also for the long term effects that will likely will confront us down the road.  When you read the people on this bulletin board and ... realizing that most people undergoing these treatments have no interest or have not found CSN or feel too unwell to even bother with this forum... None of the mis-information or lack of information is okay.  We need to let our doctors know ... and the AMA and Oncology boards and other professional cancer groups that this MUST be repaired.  

The first thing my gastroenterologist said to me after saying that "there is only ONE way to treat this"... was Don't go reading on the internet!!!  Well, my scientific and medical background allows me to easily read the professional side papers, studies, journals, and it is absolutely mind blowing the information that is out there that my gastroenterologist and the doctor that performed the advanced mammograms do not know and do not acknowledge.  

I not only read numerous articles on a daily basis... I also print them out and provide them to my radiation oncologist and primary care physician... again so they can see where I am coming from and I am quite sure they do not have the time to hunt down and read all of this... so I help them... so they can help us and prayerfully ... they will come up with less harmful treatments with a LOT less damage to our cells, tissues, entire bodies.  Again, even though my rad. onc. knows I am not taking radiation ... he is the one that continues to work with me along with my primary for palliative care and anything else I need along the way.

I am approaching one year post-diagnosis ... have had NO chemo... NO radiation... Still have enough energy to travel Florida for my work on microscopes, help take care of my Mom, work in my shop, go shopping and pretty much everything... I just have to carry a stupid diaper bag so I can cleanup whenever necessary.  Returning to NJ shortly for consults and check my bloodwork and I am asking for a follow up pet scan to see where I stand now.  

None of the doctors know what will happen with me and I am unwilling to sacrifice my body to their continued studies of what works best... The pathologists that I work for and I all agree that the radiation "treatments" cause entirely TOO MUCH collateral damage.  ... and I have not found ONE doctor that I know that would submit to RT because of what they know.

Like I recommend to everyone... Do your homework... ask a million questions... if any of the health care professionals get mad at you that is a bad sign about their open-mindedness and consideration of what it is like to be diagnosed with cancer.  YOU have to be comfortable with your decisions and more knowledge = better decisions on your part.

None of them know everything.  I was even reading yesterday that when they come off being an intern... they go from four patients daily to care for to TEN!!!  Talk about stressed out and no time to breath!  But I must tell you .. .. my younger doctors are way more in tune with my thinking than the older ones set in their ways.

I know that high patient volume helps them to see more and hopefully learn more as they go (remember they are "practicing" medicine).

I know that the average hospital / cancer treatment center must stick with "standard protocol" to maintain "risk management" (also known as LIABILITY).

I know that the surgeons must keep the OR's scheduled or they lose their priveleges.  I know that the nurses are understaffed (THIS IS ABSOLUTELY UNFORGIVEABLE).  I know that the CNA's are also understaffed and underpaid AND typically under-trained.  

I have learned SO MUCH in my sixty years and I just want to see the health care industry take a step back from the pharmaceutical influence and they must improve bedside manner and better patient care in each hospital.

Even at Memorial Sloan Kettering... they report four areas of serious medical mistakes.  That's a whole other area that you should research about where you are submitting yourself for care.

So... all of that said... 

I send the powers of healing and positive energies and extra prayers to all suffering people.

Moxie

Hi Moxie! Good to hear your update. I am very interested in your journey into alternatives to chemo-radiation and what your Memorial Sloan Kettering consultation yields as well as your next PET scan. Amazing that you are approaching your one-year anniversary of your diagnosis. I have been told by doctors eager for me to start chemo-radiation that "the pipe could become blocked at any time" if I delay chemo-radiation. (Meaning the tumor could grow so rapidly that I wouldn't be able to poo and would need emergency surgery.) And perhaps that's true. I honestly don't know. I am cheered to know you have carried on for a year, although of course every case is different.

I had my first pelvic MRI March 17, shortly after being diagnosed. Will be asking for a follow-up pelvic MRI in May.

I too am very actively on the hunt for alternative treatment possibilities, and I am doing a great deal of reading of scientific papers and studies, as you are. (Thank god I took my undergrad degree in biology!) I have temporarily postponed my chemo-radiation while I try an intensive naturopathic protocol to see if it can produce any tumor shrinkage at all. I selected the naturopath very carefuly to get the best mind available on this problem. Because if you see 10 different naturopaths you will be given 10 different protocols, and I don't have time for that obviously. Have to try to get it right the first time.

I also arranged a consult with an oncologist known for outside-the-box thinking to discuss the new immunotherapy drugs. Opdivo (nivolumab) in particular has several articles saying it's very "promising" for anal cancer.(https://www.curetoday.com/articles/opdivo-is-promising-for-advanced-anal-cancer-study-shows)

Right now these drugs are used in relapsed metastatic cases where the hope is simply to stablize. It seems to be too soon to know whether these immunotherapy drugs can actually be curative. But my PDL-1 marker is being tested to evaluate whether I would be a good candidate for immunotherapy (i.e., likely to respond).

I should add that chemo-radiation does not have a super-high likelihood of being curative in my case (although it is hard to estimate because I have not yet had a PET scan so my AC cannot be precisely staged). Best case scenario, my likelhood of cure would be 70%. Worst case scenario it would be 30%. If it is not successful, then the next step is so-called "salvage surgery" (APR and colostomy). But I just got home from a consult with the surgeon who told me that if salvage surgery was required in my case, it would not be curative either. And going straight to surgery, bypassing all the collateral damage of radiation, is guaranteed to not be curative in my case. So this is partly what is driving my need to investigate alternatives. But I don't feel I have unlimited time to conduct this search for alternatives. So it's a bit of a pressure-cooker.

Please keep us posted on your journey and discoveries, Moxie, and I will do likewise!

kim

0626june said:

thanks Moxie
I was diagnosed 4 years ago with 3-B. I was rushed into treatment and threatened that if I didn't do chemo and radiation I'd have to have surgery and a permanent colostomy. I wish I had taken the time to explore alternatives because the radiation left me incontinent. I hated that the mitomycin/fu5 chemo they used on me is a combo they've used for decades. I wish I had taken the time to research other options and am happy to hear that you are. I am happy to be alive and grateful for every day. I just wish I hadn't felt bullied into treatment. I wish you wonderful things. This forum is such a great help!
June

Hi June. Your words to Moxie helped me a lot because I am currently on a similar search for alternative treatments as Moxie is. Thank you for sharing your experience and feelings about it.

kim

Msmoxie said:

Happy to report continued good health

Hi June and Kim,  I am soooo happy that I have taken the Research/palliative/alternative approach to this anal cancer.  All of the reports I have summarized... I have provided to my significant other, my sister and my younger brother so that they too have a complete understanding of my medical history as well as the information on what the "standard protocol" is for my particular cancer being right on the sphincters (of course!... that is the way it goes with me... I don't get sick often but boy when I do!!!)  ... that first gastroenterologist was visibly angry with me for disagreeing with him... There is NEVER only one way to do something.  As June stated ... the combos they use have been in use for DECADES!!! the doctors KNOW they are too toxic... they KNOW of the side effects... they KNOW it is not curative... they KNOW we are likely to have more cancers down the road... but I firmly believe it is because they come in with the chemo/rad and DESTROY OUR EXISTING IMMUNE SYSTEM.  Then what are you supposed to fight ANY disease that confronts you from then on out????

I am happy to report that I am feeling very good.  I only have to deal with the incontinence... and soooo many people suffer from this AFTER the chemo/rad as a side effect.  CRAZY!

The doctor that diagnosed my breast cancer tried to scare me into the biopsy and chemo/rad.  Then he even tried to get me to go to a shrink for meds!!! I told him and his staff that I am stronger than they know.  I am mentally strong and stubborn and I give a lot of credit to my Dad and Mom for that.  The psychiatric profession destroyed my sister with their overprescribing/overdosing of four psych drugs at a time for more than ten years.  She was on a total of seventeen prescriptions at one time ... THERE IS NO WAY THAT THIS CAN BE OKAY ... you cannot convince me that you can mix this many prescriptions on a daily basis and your body will tolerate it!!!   At any rate the breast tumor is shrinking!!!  I have had no chemo... no radiation... no surgery... and it is positively shrinking.  I look forward to the next PET scan and my consult at Memorial Sloan Kettering.

I will keep in touch and look forward to our communications : )

Take care of YOU!!!

Kind regards to all ... Moxie   : )

Hi Moxie!

Congratulations on your continued good health and on your breast tumor shrinking! That's great news! Have you shared what alternative treatment protocol you are using in terms of supplements and whatever else? I may have missed it if you shared in a different thread. I would be glad to share my protocol (which is changing all the time). And I would be very interested to know yours.

kim

I went through chemo and radiation starting in February 2012 for stage 3 anal cancer. Thank God I am cancer free.  I have had increasing difficulting walking, with right hip pain. I can barely get in and out of my vehicle. I just saw orthopedic and had xrays. My hip joint basically no longer exists. Will be starting PT to strengthen my leg in preparation  for total hip replacement  in near future.  What shocked me the most was the change in my hip since my previous xray done 2 years prior. My bowel and bladder incontinence continues with periods that is is better than other times.  I wish you the best. Take care.

Mollymaude said:

Bone density

Debbie, good luck on your hip surgery and PT. I’m sorry you have to go through that. I’m only 3 years out and right after treatment my bone density got worse- it was in the osteopenia range- but on my last test I had actually improved and was no longer in the osteopenia range. I’m not doing anything fancy, but I do take vitamin D, calcium, and walk for exercise. I encourage everyone to get their vitamin D level checked- it is not a routine blood test- and get your levels into normal range if it’s low. Who knows what my bone density will be in ten years but at least for now I’m encouraged by the improvements.

Thank you.  I hope you will continue to do well.  I started vitamin D along with many other supplements for deficiencies due to celiac disease in 2014. Take care. Deb

I was treated for stage II anal cancer in Oct 2013.  And I've been noticing that my left hip joint acts up more.  It's not every day and it's at different levels of discomfort.  I also have a lot of discomfort with pain during peristalsis.  And I live with urinary incontinence. 

About 3-months ago I started daily walks around our apartment complex where it's paved and safe from gravel, dogs, and speeding cars.  So I feel safe with the walking.  But I notice about have way through my walk, my hip joint locks up on me.  I tried different tennis shoes, looser pants, copper waist and calf belts, Naproxen, and ... but still, the pain stopped me from walking.  I have no problems with my lungs or heart when I walk.  And I've never had any trouble walking before cancer treatment.

So after discovering this subject here at CSN yesterday, I'm thinking maybe I have Avascular Necrosis which may be caused by radiation and chemo.  I'm going to talk to my new GP about this.  The pain I get is more like a big charlie horse in the hip.  It's not painful enough to make me cry, but it's a nuisance because it stops me from planning and participating in some activites.

I start a new GP in November and he (Praise the Lord) accepts naturapathy.  I've heard so many wonderful things about him, I just feel positive there will be a change in my health.  I honestly don't feel I am at the stage of hip replacement surgery.  So hopefully with the guidance of a doctor, I will find diet and exercise programs that will help.  I have Leslie Sansones Miracle Miles and I love her methods.  I need to get back with her because walking on concrete isn't working.  And I believe in Yoga, Tai Chi and Acupuncture and have used all three in the past.

So I need to get serious about a new plan so I can walk again.  I need to lose about 30 lbs and that's why I was walking.  But you know, like so many of us here, I had no idea my body would continue to break down after treatment: especially 6-years later.  But treatment did save my life.  So there is the plus.

My heart goes out to everyone of us who is struggling: including me.  I feel the need to talk to people here (who are going through it) because it's starting to get me down.  My mind says do one thing, but my body won't let it happen.  All your input is really helpful.

Looking for a plan that works.  Hugs.  CB

They definitely don't tell you what to expect if you do survive it. I have hip, thoracic and neck pain causing headaches. I think the treatment impacts your nerves. Swimming helps. Gaba helps too but hard on your liver.

I am 8 months out from treatment (anal stage 2b) and my sacrum fractured. No idea how, but thinking it might be a really hard BM. It is so painful and PT is really helping me regain some muscle that was lost. I also am in Pelvic Floor PT and it is really helping with controlling my unexpected BMs out in public (very embarrassing). Pain where lymph nodes were radiated are also still sore but PV PT is helping that also. Good luck. God bless.