Still Terrified

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 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!

txtrisha55 said:

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

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!

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.

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.

takingcontrol58 said:

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

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!

NoTimeForCancer said:

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. 

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 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/

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. :-)