Still Terrified

MAbound
MAbound Member Posts: 1,164 Member

I go Wednesday for my post-op and 2nd pelvic wash results on Wednesday. Time is running out for me to accept or reject 28 days of EBRT. 

Part of my concern is that being diabetic now doubles my risk of developing pelvic radiation disease up to 5 years afterwards. 

I have a lot of trust in my gyn-onc, but let's face it: his focus is on curing my cancer and damn the consequences. Here's a link to a relatively recent article pertinant to that titled "Pelvic Radiation Therapy: between delight and disaster" 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663381/

I'm not as concerned about getting through the acute side effects that will eventually resolve themselves, but as regards the likely late onset side effects, I'm absolutely terrified and not sure if I can do this. To understand what I'd be agreeing to, this is one of many things that I've read, but probably the most thorough:

http://onlinelibrary.wiley.com/doi/10.1002/cncr.28849/pdf

It's interesting that no matter how many different ways I've searched, I can't seem to find anything on why pelvic radiation is the go-to treatment with or without chemo for stage 3 and 4 endometrial cancers. No studies, no articles that summarize studies, just listings of what the standard treatments are for different stages. Have any of you had better luck?

I know that none of you can make this decision for me, but your thoughts and experiences really matter to me and would be greatly appreciated. It would help to know if there are other stage 3 survivors who only had chemo but no radiation and what if anything they had or did after chemo to stay NED.

I intend to talk to my onc some more because I have a hunch that radiation is a treatment that can be revisited should I have a recurrence. At least then they'd have something to aim at rather than just blasting everthing in my pelvis, but I know not having radiation will make me that much more anxious about recurrence. It so feels like a no-win situation!

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Comments

  • beccabtown
    beccabtown Member Posts: 234
    edited October 2016 #2
    One thing I would recommend

    One thing I would recommend is to find out what kind of machine your radiation center would use. I'm being treated with the TrueBeam system (https://www.varian.com/oncology/products/treatment-delivery/truebeam-radiotherapy-system), and have had remarkably mild side effects through 20 treatments (knock on wood it will continue this way). It targets the beams very precisely to minimize damage to healthy tissue. I'm not sure how long this system has been around, but it's brand-new at my center. Some insurance companies resist covering it, but with your medical history your radiologist should be able to make a case for it.

  • brissance
    brissance Member Posts: 192
    edited October 2016 #3
    Difficult at Best

    Boy. there is no real answer for you.  Not until you have gone through the predicate time to see what the future holds.  I am pleased you are studying the consequences as well as the value of the treatment.  I believe that the radiation is for local or adjacant recurrence and the chemo is more targeting the system or distant recurrence.  My tumor was in the upper part of the uterus but the radiation (brachy) was more geared for the cuff.  I honestly do not know if doing the radiation was the best move but I decided to be as aggressive as possible.  I was terrified of getting a recurrence and then always wondering if my failure to have radiation had cost me a recurrence.  And actually I think that was more of the reason.  Agian, no correct answers just the answer that I felt more comfortable with accepting the consequences.   You are smart and you will come up with "your" right answer.  God bless you.

  • DrienneB
    DrienneB Member Posts: 182
    edited October 2016 #4
    Still Terrified - Radiation

    I was diagnosed with a mixed mullerian tumor (MMMT) arising in background of endometrioid adenocarcinoma. Stage IIIB, grade 3. I had a greater than 50% myometrial invasion, which is hard to assess when all is morcellated in a laparascopic surgery, and a positive pelvic washing. I had 6 rounds of Taxol and Carboplatin. I did not have radiation. I  too had a very hard time deciding about it.

    In the end, my decision not to have radiation was not based on statistics, but was made by default. A lot of time passed as I struggled to get clear answers from my gyn/onc, who was against it, and get opinions from a tumor board (for it) and another gyn/onc (50/50 for/against). Time passed and I got worn down, and had a work trip I had to make. Since the first radiologist I spoke with said that I should have radiation asap after chemo, and no later than a couple of weeks after chemo to be effective, as more time passed, I lost my initiative to see the matter through. It felt like an uphill battle anyway.

    I saw results of one study, which I think might be the only large study they have to reference regarding MMMT, from 2008 or 2009.  If I am remembering correctly, it showed a slightly higher percentage of patients with stages III and IV of MMMT who had combined chemo with radiation to have survived more than 5 years than patients of the same stage/grade who have had chemo alone. One of its drawbacks is that it lumps patients in 2 groups: Those with stages I and II, and those with stages III and IV. And I don't think the case for radiation was overwhelming. I am sorry that I don't have quick access to it. I will look for it, scan it, and send it as an attachment if you can give me your email address. 

    I think you will find a variety of opinions among doctors. The thing is, we have rare cancers for which there is very little research, and which are known to be aggressive, scaring the living daylights out of everyone. So it seems to make sense to throw everything possible at it, in hopes that something will work. But you are absolutely right to consider the toll or possible problems with radiation. I have considerable pain problems every day from the treatment I've already had, and do not regret having not had more. This is my experience.

    Praying for peace and healing for you,

    jane

  • Soup52
    Soup52 Member Posts: 908 Member
    Ok, well I had radiation

    Ok, well I had radiation external and internal after surgery and before chemo. My doc wanted to be agressive clear cell endometrial cancer 111c. Maybe I'm stupid but I didn't feel I had time to question etc. I had to get on with the treatment. So far I am clear after the first ct scan post treatment. Do I have lasting affects from radiation, yes unfortunatelY. While not on a daily basis, I do have some abdominal pain and constipation etc. I'm never sure if there are any foods that trigger it. I am considering going to a gastroenterologist for help. These Fter affects are something I was told about, but I'm not ready to die and felt it was worth a chance to live. I am enjoying many good days.

  • txtrisha55
    txtrisha55 Member Posts: 693
    edited October 2016 #6
    I can only talk to my

    I can only talk to my experience with my gyn onc dr. I was at stage 3c1 grade 3 carcinoma sarcoma uterine cancer in 2011.  My Dr said she only did chemo saving radiation for later  if it came back.  That was because the nnational cancer institute ( NCI)  found that having chemo & radiation did not  show  a significant impact against the cancer than just chemo on its own.  You can always get a second opinion.  I am a 5 year survivor from my cancer and just had chemo. If they removed all female parts then there is not anything left to radiate except the bones and organs.  Radiation is supposed to be able to pinpoint a point not the whole area.  Good luck in your decision. Praying for you. Trish

  • takingcontrol58
    takingcontrol58 Member Posts: 264 Member
    edited October 2016 #7
    Never Had Radiation and am NED

    MAbound,
    I was diagnosed with Stage 3b, Grade 3 adenocarcinoma in Nov 2014 at the time of my surgery. In addition
    to my 4.3cm tumor, I had a 9CM fibroid, plus a few cancer spots on my ovaries and a 1/2cm tumor on my
    outer rectum, which was removed.

    Recommendation was for 2 infusions of Cisplatin plus 28 days of external radiation (IMRT), plus 6 infusions of
    Taxol/Carbo. Goal for radiation was to get all the "micrometastases" floating around.  There would be no tumor
    to target. They called this insurance.

    Before starting treatment, had CT scan in Jan 2015 that showed my cancer had metastasized all over my body
    - liver, spleen, 5cm tumor on outer rectum, nodules on lungs, kidneys, spleen and outer colon. Total of 34cm of tumors.
    My husband was told I had 4-6 mos to live.  Radiation was taken off the table. I was also told that radiation destroys
    your liver (by Sloan Kettering).

    The week I had the CT scan, I was having nightmares about getting the Cisplatin and radiation, because I had studied up on
    how dangerous Cisplatin was along with the radiation. If there was no tumor to target, they would just shoot radiation at my
    entire pelvis.  I have since learned that radiation increases your risk of bladder cancer and aiming radiation at the pelvis can
    destroy the colon, stomach and bladder.  A few days later after these nightmares, I was told no radiation because my
    cancer had metastasized.  So now I had more cancer but no radiation. I was so happy my cancer metastasized. My husband
    thought I was crazy,  I call it divine intervention. I wasn't meant to have radiation.  At the time, I would have just done what
    the doctors said.  But now that I have spent 1 1/2 years researching cancer, I know getting radiation probably would have made
    my situation worse. Radiation causes cancer and mutates your good cells while it is supposedly killing your cancer cells. 
    If DNA damage can lead to cancer, why would you actively want to get a treatment that causes more DNA damage?

    I mentioned previously that I only receeived 6 infusions of Taxol/Carbo.  After 2 infusions, my doctor put me on metformin,
    500mg, 2X day. I took the metformin with the remaining 4 infusions.  After the 3rd infusion and on metformin for one month,
    I was down to 4cm of tumors (88% shrinkage). This was March 2015. Finished 6th chemo in May 2015 (the last chemo I
    ever had). Still had 2cm of tumors. They wanted me to get 4 more infusions of Taxol/Carbo which I refused. Was completely
    NED in August 2015. Have remained NED to this day- progression free since March 2015. As I've mentioned, the metformin
    just stopped the cancer in its tracks for me, because I believe it was my high insulin growth factor levels that were fueling my
    cancer (endometrial cancer cells have many insulin receptors on their surface which is why metformin is so successful in
    fighting EC).  So I went from a death sentence to complete remission in 7 months (and no radiation).

    You have to make your own decisions on treatment, but I believe everyone should weigh all the facts and do what they feel is
    right (in your gut). Don't let the doctors pressure you. I personally believe that the only way to heal your cancer is a combination
    of "minimal" standard treatment with complementary treatment (which for me was losing 40lbs, exercising, radically changing my diet,
    eliminating almost all sugar and alcohol, taking metformin, 2 aspirins a day, 44 supplements a day (many that target
    cancer) and doxycycline (an antibiotic).  Most of what I did to heal myself had nothing to do with cancer treatment.  You have to
    find the root causes of what is making cancer grow in your body or you will never heal. The cancer industry does not address
    the causes of your cancer- and your cancer grew because your internal environment was toxic. You just need to figure out what
    your own health conditions are - and oncologists are not the doctors doing the proper tests to figure that out.

    I would high recommend a book entitled "Cancer is not a Disease", It's a Survival Mechanism, by Andreas Moritz. I lost my fear of
    cancer after reading this book. I personally believe he may be correct on his theory of what cancer is.  It is not out to kill us. 
    It is really a last ditch survival mechanism our bodies have to try to save us (the tumor is sopping up all the excess toxins and
    metabolic wastes floating around in our bodies, which would kill us if the tumor wasn't trying to stop it).  So if you cut out the tumor,
    the cancer goes on to form more tumors because you still haven't gotten rid of what was causing the cancer in the first place. 
    This is what happend to me.  I had more cancer after surgery than before surgery, before I started any treatment. A tumor needs a
    certain internal environment in which to grow. Doctors don't even discuss this with you.  Cells are damaged by gene mutations, toxins,
    viruses, bacteria. There is a reason we get cancer. You will have to figure that out for yourself. To me, a tumor is like a big alarm bell
    going off- trying to wake us up to the fact that we have a major problem going on in our body. A fever indicates a more minor problem,
    a tumor indicates a major problem.

    Here are two quotes from the book - "Disease is the body's way of healing itself and modern tratment is a sure way to impair or
    even destroy this ability."

    "Tumors act like sponges for the poisons that circulate and accumulate in the blood, lymph and tissue fluids.  These poisons
    are the real cancer, and they continue circulating unless a tumor filters them out.  By destroying the tumor, the real cancer
    remains and keeps circulating until a new tumor is generated (called recurrence). ... Cancer cells don't endage a person's life,
    but whatever causes them does."

     

    Think about it.  You have cancer because you have a very toxic internal environment ( from chemicals, bacteria, viruses, damaged
    DNA, excess hormones) in your body.  So now our treatment is more toxins (chemotherapy and radiation).  You have already
    pushed your body too far which is why we get cancer- so we now push it even further with dangerous drugs and radiation- no wonder
    most people do not survive. I think it is a delicate balance you need to figure out as to how much treatment you want. I believe the less
    the better, so your own immune system can take over again. Your own immune system is the only thing that can heal you. It has been
    keeping you alive after all for all the years up to when you got cancer, and it is still working to keep you alive, if you don't
    completely destroy it with more dangerous treatments.

    I know most people believe cancer treatments alone can cure them but I personally do not believe this. I mean this for those
    of us who have advanced or late stage cancer. I believe you have to do much, much more, which is not related to cancer treatments. 
    There are no cancer treatments today that will cure people like me, yet here I am, healthier than I have ever been in my life and still
    cancer free. I would have stopped after 3chemo infusions (but didn't know then what I know now). Will I remain cancer free? Nobody
    knows. But now I am doing all the things I should have been doing before I got cancer, that perhaps would have prevented me from
    getting cancer in the first place, the same things that I hope will prevent a recurrence.

    May God guide you in making the right decision. He certainly helped me.

    Takingcontrol58

  • MAbound
    MAbound Member Posts: 1,164 Member

    One thing I would recommend

    One thing I would recommend is to find out what kind of machine your radiation center would use. I'm being treated with the TrueBeam system (https://www.varian.com/oncology/products/treatment-delivery/truebeam-radiotherapy-system), and have had remarkably mild side effects through 20 treatments (knock on wood it will continue this way). It targets the beams very precisely to minimize damage to healthy tissue. I'm not sure how long this system has been around, but it's brand-new at my center. Some insurance companies resist covering it, but with your medical history your radiologist should be able to make a case for it.

    So glad you responded

    I sort of consider you our current radiation therapy expert based on posts from earlier threads and you make a strong case for submitting to RT. I looked at your link for the Varian True Beam and it looks like that is a brand name for what is generically called Stereotactic Body Radiotherapy (SBRT) which the oncology clenter I'm being treated at does offer. It looks like they offer everything as regards RT options, but what gives me pause is their criteria for who gets which kind. Most of it depends on where tumors are located as they are designed to laser in on the tumors to spare surrounding normal tissues.

    I no longer have identifiable tumor (my PET/CT scan just before my second pelvic wash was negative), so I think that's why I'm being encouraged to undergo large field EBRT to cover the bases just in case there is microscopic cancer remaining somewhere down there. I have to weigh the odds of that versus the certain damage RT would do to me down the road.

    I'm not quite in the same boat as those of you with USPC, serrous, clear cell, MMT subgroups of endometrail cancer. I'm high risk becaue my cancer was into an ovary and fallopian tube before it was diagnosed and of course the grade. I was told that 0-1 positive pelvic lymph nodes are interpreted as a negative, so Im presuming my risk comes comes from cells having possibly escaped elsewhere into the body from that ovary and fallopian tube and it's the chemo that's either taken care of those or hasn't. I guess I need to ask if the aim of RT for me is to sterilize the pelvic lymph nodes remaining like you said is being done for you. 

    Thanks for your understanding and repeated replies as I wrestle with this. The decision is certainly consuming all of my focus at the moment!

     

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited October 2016 #9
    brissance said:

    Difficult at Best

    Boy. there is no real answer for you.  Not until you have gone through the predicate time to see what the future holds.  I am pleased you are studying the consequences as well as the value of the treatment.  I believe that the radiation is for local or adjacant recurrence and the chemo is more targeting the system or distant recurrence.  My tumor was in the upper part of the uterus but the radiation (brachy) was more geared for the cuff.  I honestly do not know if doing the radiation was the best move but I decided to be as aggressive as possible.  I was terrified of getting a recurrence and then always wondering if my failure to have radiation had cost me a recurrence.  And actually I think that was more of the reason.  Agian, no correct answers just the answer that I felt more comfortable with accepting the consequences.   You are smart and you will come up with "your" right answer.  God bless you.

    Ah Patti, thank you so much

    Ah Patti, thank you so much for your encouragement. You've been so good to me. I'm the professional worrier in the family (somebody has to do it!) and I really, really hate being in such a catch-22 situation. I make myself and everyone else a bit crazy at times, but it's never been for such a life and death decision. This really sucks!

  • MAbound
    MAbound Member Posts: 1,164 Member
    DrienneB said:

    Still Terrified - Radiation

    I was diagnosed with a mixed mullerian tumor (MMMT) arising in background of endometrioid adenocarcinoma. Stage IIIB, grade 3. I had a greater than 50% myometrial invasion, which is hard to assess when all is morcellated in a laparascopic surgery, and a positive pelvic washing. I had 6 rounds of Taxol and Carboplatin. I did not have radiation. I  too had a very hard time deciding about it.

    In the end, my decision not to have radiation was not based on statistics, but was made by default. A lot of time passed as I struggled to get clear answers from my gyn/onc, who was against it, and get opinions from a tumor board (for it) and another gyn/onc (50/50 for/against). Time passed and I got worn down, and had a work trip I had to make. Since the first radiologist I spoke with said that I should have radiation asap after chemo, and no later than a couple of weeks after chemo to be effective, as more time passed, I lost my initiative to see the matter through. It felt like an uphill battle anyway.

    I saw results of one study, which I think might be the only large study they have to reference regarding MMMT, from 2008 or 2009.  If I am remembering correctly, it showed a slightly higher percentage of patients with stages III and IV of MMMT who had combined chemo with radiation to have survived more than 5 years than patients of the same stage/grade who have had chemo alone. One of its drawbacks is that it lumps patients in 2 groups: Those with stages I and II, and those with stages III and IV. And I don't think the case for radiation was overwhelming. I am sorry that I don't have quick access to it. I will look for it, scan it, and send it as an attachment if you can give me your email address. 

    I think you will find a variety of opinions among doctors. The thing is, we have rare cancers for which there is very little research, and which are known to be aggressive, scaring the living daylights out of everyone. So it seems to make sense to throw everything possible at it, in hopes that something will work. But you are absolutely right to consider the toll or possible problems with radiation. I have considerable pain problems every day from the treatment I've already had, and do not regret having not had more. This is my experience.

    Praying for peace and healing for you,

    jane

    Yes!

    Thank you for sharing your story with me again in this thread and the offer to send the study if you can find it. I'd really like that as I haven't had much luck on my own. I'll PM you shortly with my email.

    You and I are pretty close as far as staging and grade goes, except that I don't have the MMMT variety of cancer. I think mine was hormone driven and why I'm going on progesterone therapy next. Those facts about me are in the not-doing-RT column for me.  Congratulations on being 3 years NED, BTW! :-)  

  • MAbound
    MAbound Member Posts: 1,164 Member

    I can only talk to my

    I can only talk to my experience with my gyn onc dr. I was at stage 3c1 grade 3 carcinoma sarcoma uterine cancer in 2011.  My Dr said she only did chemo saving radiation for later  if it came back.  That was because the nnational cancer institute ( NCI)  found that having chemo & radiation did not  show  a significant impact against the cancer than just chemo on its own.  You can always get a second opinion.  I am a 5 year survivor from my cancer and just had chemo. If they removed all female parts then there is not anything left to radiate except the bones and organs.  Radiation is supposed to be able to pinpoint a point not the whole area.  Good luck in your decision. Praying for you. Trish

    NCI Study

    Thank you for sharing your story with me again! I remembered you from the earlier thread I posted and was thinking about you. I'm so glad you responded. Thank you for your support!

    I've been to the NCI site and haven't yet found the study you were refering to. Did your doctor tell you about it or did you actually get to read it yourself? I'll keep digging around in there, but if you have a copy or link to it, I'd really like to read it. I understand the mechanics and implications of RT pretty well at this point, but can't help but wonder where the studies are that have made it such a standard of treatment.  It's a big part of why I'm having such a hard time with making this decision!

     

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,032 Member
    I understand you anxiousness.

    I understand you anxiousness.  I did have radiation but never really could wrap my mind around that one.

    Pelvic Radiation Disease is real.  My dear friend had suffered from it and found lots of information on it across the pond - not so much here.  Sadly, she has passed away from cervical cancer, but was a very real advocate and was recognized for her work.

    Listen to everything and in the end, do what you decide is best for you. 

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited October 2016 #13
    Soup52 said:

    Ok, well I had radiation

    Ok, well I had radiation external and internal after surgery and before chemo. My doc wanted to be agressive clear cell endometrial cancer 111c. Maybe I'm stupid but I didn't feel I had time to question etc. I had to get on with the treatment. So far I am clear after the first ct scan post treatment. Do I have lasting affects from radiation, yes unfortunatelY. While not on a daily basis, I do have some abdominal pain and constipation etc. I'm never sure if there are any foods that trigger it. I am considering going to a gastroenterologist for help. These Fter affects are something I was told about, but I'm not ready to die and felt it was worth a chance to live. I am enjoying many good days.

    Not stupid

    I'm counting myself lucky that I've had a bit of time to research RT and think about it rather than being rushed into it. I was worried about never having been offered the "sandwich treatment", but I've come to terms with that and am not worried that I missed out on something that would have been a better option for me.

    We are all in such different places as we get diagnosed and begin treatment. If anyone is stupid it's the docs who follow a standard algorhythm for guiding our treatment without regard to our understanding and ability to question or be confident in what's being proposed. I would have done the same as you Soup when all of this started for me. Now that I know more than I did when all of this started I'm a bit more of a pill as a patient. You have the assurance that you've done all that you could to be NED, while I'm angsting about whether or not I'm about to shoot myself in the foot and live to regret it. It seems like this whole business is one trade-off after another. It really makes us want to second guess ourselves and that's not any more comfortable to live with than treatment side effects.

    Your posts are always so helpful, so keep them coming. I'm hoping you'll get the help you need with your GI issues and having a gastroenterologist on your team has got to be a good thing as time progresses. Thank you for being here for me.

  • Editgrl
    Editgrl Member Posts: 903
    I, too, went rounds with

    I, too, went rounds with whether to have radiation or not.  If you check the thread "Change in Treatment Plan Carcinosarcoma MMMT" it will show you what I went through in making my decision.

    In a nutshell, my doctors disagreed on the value of external radiation for me.  My gyn/onc was strongly in favor of both brachytherapy and external radiation.  The first radiologist originally agreed, but after consulting with colleagues, decided against recommending any radiation.  The second radiologist I met with said I certainly did not need both, as he could design an external plan that would encompass the vaginal cuff, however, he also said that the value of external for my stage and type was not clear-cut.  I actually went through the simulation process getting the scan and tattoos, but had also arranged for yet another opinion with a panel of medical, gynecological and radiology oncologists.  I was hoping to seek some sort of consensus, but they could not offer that, as they disagreed as well.  In the end, I decided to do brachytherapy only, reserving external for recurrence, should that happen.

    I also searched for studies, and found only one that showed a slight advantage for later stage grade 3 cancers but as I remember there were some problems with the study.  It may well be the one DrienneB is speaking of.  I am looking to see if I can find it.  Many of the studies only addressed early stages and/or lower grade cancers.

    This was by far the most difficult decision I ever made.  But I had already decided to incorporate other methods in my healing from cancer, much as takingcontrol has done.  The day of my first external radiation session, I called and cancelled.  I just had a very strong feeling that this was not the right choice for me. 

    If you are interested, PM me, and I can provide you with even more details.

    Chris

     

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited October 2016 #15

    Never Had Radiation and am NED

    MAbound,
    I was diagnosed with Stage 3b, Grade 3 adenocarcinoma in Nov 2014 at the time of my surgery. In addition
    to my 4.3cm tumor, I had a 9CM fibroid, plus a few cancer spots on my ovaries and a 1/2cm tumor on my
    outer rectum, which was removed.

    Recommendation was for 2 infusions of Cisplatin plus 28 days of external radiation (IMRT), plus 6 infusions of
    Taxol/Carbo. Goal for radiation was to get all the "micrometastases" floating around.  There would be no tumor
    to target. They called this insurance.

    Before starting treatment, had CT scan in Jan 2015 that showed my cancer had metastasized all over my body
    - liver, spleen, 5cm tumor on outer rectum, nodules on lungs, kidneys, spleen and outer colon. Total of 34cm of tumors.
    My husband was told I had 4-6 mos to live.  Radiation was taken off the table. I was also told that radiation destroys
    your liver (by Sloan Kettering).

    The week I had the CT scan, I was having nightmares about getting the Cisplatin and radiation, because I had studied up on
    how dangerous Cisplatin was along with the radiation. If there was no tumor to target, they would just shoot radiation at my
    entire pelvis.  I have since learned that radiation increases your risk of bladder cancer and aiming radiation at the pelvis can
    destroy the colon, stomach and bladder.  A few days later after these nightmares, I was told no radiation because my
    cancer had metastasized.  So now I had more cancer but no radiation. I was so happy my cancer metastasized. My husband
    thought I was crazy,  I call it divine intervention. I wasn't meant to have radiation.  At the time, I would have just done what
    the doctors said.  But now that I have spent 1 1/2 years researching cancer, I know getting radiation probably would have made
    my situation worse. Radiation causes cancer and mutates your good cells while it is supposedly killing your cancer cells. 
    If DNA damage can lead to cancer, why would you actively want to get a treatment that causes more DNA damage?

    I mentioned previously that I only receeived 6 infusions of Taxol/Carbo.  After 2 infusions, my doctor put me on metformin,
    500mg, 2X day. I took the metformin with the remaining 4 infusions.  After the 3rd infusion and on metformin for one month,
    I was down to 4cm of tumors (88% shrinkage). This was March 2015. Finished 6th chemo in May 2015 (the last chemo I
    ever had). Still had 2cm of tumors. They wanted me to get 4 more infusions of Taxol/Carbo which I refused. Was completely
    NED in August 2015. Have remained NED to this day- progression free since March 2015. As I've mentioned, the metformin
    just stopped the cancer in its tracks for me, because I believe it was my high insulin growth factor levels that were fueling my
    cancer (endometrial cancer cells have many insulin receptors on their surface which is why metformin is so successful in
    fighting EC).  So I went from a death sentence to complete remission in 7 months (and no radiation).

    You have to make your own decisions on treatment, but I believe everyone should weigh all the facts and do what they feel is
    right (in your gut). Don't let the doctors pressure you. I personally believe that the only way to heal your cancer is a combination
    of "minimal" standard treatment with complementary treatment (which for me was losing 40lbs, exercising, radically changing my diet,
    eliminating almost all sugar and alcohol, taking metformin, 2 aspirins a day, 44 supplements a day (many that target
    cancer) and doxycycline (an antibiotic).  Most of what I did to heal myself had nothing to do with cancer treatment.  You have to
    find the root causes of what is making cancer grow in your body or you will never heal. The cancer industry does not address
    the causes of your cancer- and your cancer grew because your internal environment was toxic. You just need to figure out what
    your own health conditions are - and oncologists are not the doctors doing the proper tests to figure that out.

    I would high recommend a book entitled "Cancer is not a Disease", It's a Survival Mechanism, by Andreas Moritz. I lost my fear of
    cancer after reading this book. I personally believe he may be correct on his theory of what cancer is.  It is not out to kill us. 
    It is really a last ditch survival mechanism our bodies have to try to save us (the tumor is sopping up all the excess toxins and
    metabolic wastes floating around in our bodies, which would kill us if the tumor wasn't trying to stop it).  So if you cut out the tumor,
    the cancer goes on to form more tumors because you still haven't gotten rid of what was causing the cancer in the first place. 
    This is what happend to me.  I had more cancer after surgery than before surgery, before I started any treatment. A tumor needs a
    certain internal environment in which to grow. Doctors don't even discuss this with you.  Cells are damaged by gene mutations, toxins,
    viruses, bacteria. There is a reason we get cancer. You will have to figure that out for yourself. To me, a tumor is like a big alarm bell
    going off- trying to wake us up to the fact that we have a major problem going on in our body. A fever indicates a more minor problem,
    a tumor indicates a major problem.

    Here are two quotes from the book - "Disease is the body's way of healing itself and modern tratment is a sure way to impair or
    even destroy this ability."

    "Tumors act like sponges for the poisons that circulate and accumulate in the blood, lymph and tissue fluids.  These poisons
    are the real cancer, and they continue circulating unless a tumor filters them out.  By destroying the tumor, the real cancer
    remains and keeps circulating until a new tumor is generated (called recurrence). ... Cancer cells don't endage a person's life,
    but whatever causes them does."

     

    Think about it.  You have cancer because you have a very toxic internal environment ( from chemicals, bacteria, viruses, damaged
    DNA, excess hormones) in your body.  So now our treatment is more toxins (chemotherapy and radiation).  You have already
    pushed your body too far which is why we get cancer- so we now push it even further with dangerous drugs and radiation- no wonder
    most people do not survive. I think it is a delicate balance you need to figure out as to how much treatment you want. I believe the less
    the better, so your own immune system can take over again. Your own immune system is the only thing that can heal you. It has been
    keeping you alive after all for all the years up to when you got cancer, and it is still working to keep you alive, if you don't
    completely destroy it with more dangerous treatments.

    I know most people believe cancer treatments alone can cure them but I personally do not believe this. I mean this for those
    of us who have advanced or late stage cancer. I believe you have to do much, much more, which is not related to cancer treatments. 
    There are no cancer treatments today that will cure people like me, yet here I am, healthier than I have ever been in my life and still
    cancer free. I would have stopped after 3chemo infusions (but didn't know then what I know now). Will I remain cancer free? Nobody
    knows. But now I am doing all the things I should have been doing before I got cancer, that perhaps would have prevented me from
    getting cancer in the first place, the same things that I hope will prevent a recurrence.

    May God guide you in making the right decision. He certainly helped me.

    Takingcontrol58

    So much truth in what you say

    Thank you for sharing your story. You've certainly given me some good options to look into for after treatment regardless of the direction it takes. If my pelvic wash comes back positive, radiation will no longer be an option for me either and I confess to not feeling too anxious about that scenario just like you were happy when told you could not have radiation. I so get that! Having responsibility for the decision taken out of my hands would probably feel like a relief, but confirmed metastasis in spite of chemo would be crazy scary.

    Everyone's cancer is different, but it sounds like you have the same type (adenocarcinoma) as I have have and I've see a lot that supports what you said regarding diet, excercise, metformin, supplements, etc. and have been looking into such things for what I can do for myself after treatments end. No naturopathic doctors specializing in cancer to guide me so far, but I've still got my ear to the ground to find one. I've lost 30 lbs. so far, but working on losing more which oddly keeps my blood sugars elevated the less I eat. My laid back PCP only has me on 500mg. Metformin daily, which was started with my 2nd chemo cycle,  but I'm changing to my husband's PCP when I can next year because I think he's a lot more conciencious about managing his diabetes these past 20 years than mine is. My cancer probably got as far as it did because my PCP took such a wait-and-see approach to risk factors I had, especially the late, late menopause. 

    It never hurts to do what we can to make our bodies less accommodating for any lingering cancer cells. May you stay NED forever!

  • MoeKay
    MoeKay Member Posts: 402 Member
    edited October 2016 #16
    My Situation

    Has your gyn-onc provided you with the specific findings about your tumor on which he's basing his recomendation for EBRT?  I had both EBRT and brachytherapy for endometrial cancer in 1999.  Before surgery, my gyn-onc said that depending on the surgical and pathological findings, I may need no radiation, internal radiation, external radiation, or both. 

     It turned out that I won (or lost, depending on how you look at it) the radiation lottery, and needed both types of radiation for the following reasons.  First, I had a deeply-invasive tumor, which had invaded more than 80% of the thickness of my myometrium.  Second, pathology determined that I had extensive lymph-vascular space invasion (LVSI), which is a significant risk factor for recurrence in endometrial cancer.  See: http://www.sciencedirect.com/science/article/pii/S0959804915004463.  Third, my tumor arose in the lower uterine segment close to the cervix, which is another risk factor for local recurrence.  

    I do not have diabetes, so I'm not familiar with how this fits into the radiation picture.  I'm assuming you've discussed the information you've found about diabetes doubling your risk of pelvic radiation disease with your gyn-onc?  I guess I would want to know doubling of what?  How common is pelvic radiation disease in non-diabetics?  If it's an extremely rare side effect, doubling the risk may still make it quite rare.  I would also thoroughly discuss with your gyn-onc, and maybe a second-opinion gyn-onc at another institution, whether declining radiation now under the theory that you can always get it later would jeopardize your chances of long-term survival. 

    Just a few of my thoughts on the issue. 

    Maureen

     

     

  • MAbound
    MAbound Member Posts: 1,164 Member

    I understand you anxiousness.

    I understand you anxiousness.  I did have radiation but never really could wrap my mind around that one.

    Pelvic Radiation Disease is real.  My dear friend had suffered from it and found lots of information on it across the pond - not so much here.  Sadly, she has passed away from cervical cancer, but was a very real advocate and was recognized for her work.

    Listen to everything and in the end, do what you decide is best for you. 

    How long since RT for you?

    I see that you had both the external and internal RT. What side effects did you/are you dealing with and which ones were temporary. Thanks for responding....you always seem to come through for me and that means so much!

  • Editgrl
    Editgrl Member Posts: 903
    edited October 2016 #18
    MAbound said:

    So much truth in what you say

    Thank you for sharing your story. You've certainly given me some good options to look into for after treatment regardless of the direction it takes. If my pelvic wash comes back positive, radiation will no longer be an option for me either and I confess to not feeling too anxious about that scenario just like you were happy when told you could not have radiation. I so get that! Having responsibility for the decision taken out of my hands would probably feel like a relief, but confirmed metastasis in spite of chemo would be crazy scary.

    Everyone's cancer is different, but it sounds like you have the same type (adenocarcinoma) as I have have and I've see a lot that supports what you said regarding diet, excercise, metformin, supplements, etc. and have been looking into such things for what I can do for myself after treatments end. No naturopathic doctors specializing in cancer to guide me so far, but I've still got my ear to the ground to find one. I've lost 30 lbs. so far, but working on losing more which oddly keeps my blood sugars elevated the less I eat. My laid back PCP only has me on 500mg. Metformin daily, which was started with my 2nd chemo cycle,  but I'm changing to my husband's PCP when I can next year because I think he's a lot more conciencious about managing his diabetes these past 20 years than mine is. My cancer probably got as far as it did because my PCP took such a wait-and-see approach to risk factors I had, especially the late, late menopause. 

    It never hurts to do what we can to make our bodies less accommodating for any lingering cancer cells. May you stay NED forever!

    If you want to find a

    If you want to find a naturopathic oncologist, this website is a good place to start.  It lists board-certified naturopathic oncologists in the US and Canada.

    https://oncanp.org/world-map/us/

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited October 2016 #19
    Editgrl said:

    If you want to find a

    If you want to find a naturopathic oncologist, this website is a good place to start.  It lists board-certified naturopathic oncologists in the US and Canada.

    https://oncanp.org/world-map/us/

    And just like that!

    OMG. There's actually one just a 2 hour drive from where I live. Thank you so much! I was just getting nowhere with this on my own. I'll definitely be looking into her more once I get past this RT issue. One step at a time, but you really helped me with this one. :-)

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited October 2016 #20
    Very Helpful

    Ok, that helps me to understand why RT is a standard of care that makes some sense and will help direct some of my questions on Wednesday with my gyn-onc. I don't have the extensive LVSI situation you were in, but after a lot of back and forth between my onc and multiple pathologists from different institutions, they ultimately decided that my cancer originated near the neck of my uterus and spread down to the cervix (but was contained there) and up into the fundus from there. I was an interesting and challenging case for them. Lucky me! That changed my original invasion extent from 30% of myometrial thickness  to 70% because the muscle is thinner there. Bummer, heh?

    As far as the claim that diabetes doubles my risk of developing pelvic radiation disease, that came from a March/April 2013 article in OncologyNurseAdvisor.com titled Radiation and Your Patient. It was written by a medical journalist, but he cited the following as his source for that:

    http://www.cghjournal.org/article/S1542-3565(12)00900-7/pdf 

    It's twice the risk as compared to non-diabetic patients. I don't like the implications of being in that group regardless of any percentages because those will vary depending on what you are reading. The 2nd  link in my original post in this thread did give some percentages for incidence of GI complications for their study, but the first link, which is more recent, considered the under-accounting of the incidence of PRD and thinks it's as high as 90%. Yikes!

    I'm really taken with how long its been since your diagnosis and treatment and I'm curious as to how RT went for you and how it's impacted you since.

    Thank you for your response, it's giving me more to think about than I was able to achieve on my own. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,032 Member
    MAbound said:

    How long since RT for you?

    I see that you had both the external and internal RT. What side effects did you/are you dealing with and which ones were temporary. Thanks for responding....you always seem to come through for me and that means so much!

    BTW, here is one of the

    BTW, here is one of the articles my beautiful friend, Tranette had done for Pelvic Radiation Disease. 

    http://www.expressnews.com/lifestyle/health-family/article/Cured-from-cancer-but-at-what-cost-6431691.php