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Radiation fears and questions

SI
Posts: 21
Joined: Jan 2010

I have just finished the 6th and last round of chemo and was expecting to start Megace as recommended by the gyn oncologist. (I am stage IIIA with positive washings and some clusters of microscopic cells on the colon.) However, the chemo oncologist and radiation oncologist recommended radiation instead of Megace. This would be 5 days a week for 5 weeks. I am very fearful of radiation, but just as fearful of the cancer recurring. One oncologist mentioned that radiation would improve my odds of the cancer not recurring by only 3%, but that the risk of severe permanent damage would be 10%. What are your thoughts and experiences with radiation? I know that some or maybe most of you who have had radiation have had some lasting effects. It was frightening to read the side effects listed on the consent form. One of the side effects listed is "death". As you can tell, I am very afraid. Would very much like to hear what your experiences have been and whether you feel that it has been beneficial or worth it.
Si

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Si

Radiation impacts each person differently. I had radiation first and then chemo as my gyn onc thought that radiation was the most important thing to start with. I had external radiation 5 days/week for 5 weeks and then 5 targeted treatments to the vaginal area(but not brachy).

I drove myself to treatments every day. The first few weeks I did o.k....really no symptoms. As the treatments progressed I found myself being more tired and having some GI symptoms, mostly loose stools. I found that Lomotil was a BIG help! I have had some issues with my bowels ever since but I have learned to live with it.

The difficult part is that some effects of radiation can show up much later so one never knows. I chose to do the radiation as my dr. and his 2 partners, felt that was the best course for me and I wanted to go after it aggressively.

Will be thinking about you as you make this important decision.

Karen

culka's picture
culka
Posts: 161
Joined: Oct 2009

I had only one, hips pain. And it was only because I was taking herbs and royal jelly with ginseng. 8 months later my tail bone started acting funny. I couldn`t sit, but with strict diet I fixed these problems.
Radiation will not improve our numbers in statistics. It is good for local recurrence.
And we still don`t know about late side effects, like 20 years from now, right?

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

Hello Si:

I only had 3 brachy internal radiation treatments. My radiation oncologist did not want to do pelvic radiation because of my intense scarring from my edometriosis and he indicated that radiation would cause more scarring in the long term which would cause me problems in the long run.

Recently, I had a tumor which they wanted to radiate. I decided against it because once they radiate a spot, they will not be able to radiate that spot again. Fortunately, I was able to have the tumor surgically removed (it was negative!).

It is still a personal decision on whether to use radiation or any other kind of treatment. If you are not sure, you may want to consult another doctor for his advice.

Also, not doing radiation because the side effect has "death" in it, if you look at most drugs and items that we use on a daily basis you will find that it can cause "death", so I wouldn't use that as a guideline for "not" doing radiation.

Tiredness is a true side effect from radiation. However, everyone is different and so the long term effects are basically unknown.

When you take an active role in planning your own treatment, then some of the fear is taken away no matter whether that is seeking another opinion, doing or not doing a treatment, etc., and asking questions.

In my case, I decided not to look at any of the side effects. I gave it to my husband to look at because I would believe I had every single side effect!

I wish you well.

Kathy

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I had chemo and radiation -- 33 rounds of latter. I thought the radiation was a little more challenging than chemo...had bowel issues and after 2 weeks was very tired. I drove myself to each session and was in and out in 20 minutes..easy!

Today being away from any treatments for 9 mos. I have very few side-affects, outside of an on-off pain in my pelvic/hip area. Not cancer but thinking start of arthritis.

If we read and agreed with all the postings with side affects from anything in life -- drugs, foods, etc, -- we'd never to a thing. When was the last time you read the side affects from meds you might take? Death is usually one of them...agree? Hum...do you take them even with listing of death?

If it were me and you trusted you doc, go with the radiation. If you don't feel comfortable with the doctor suggestion, why not get a 2nd doc opinion? You must feel comfortable with whatever decision you make.

Best of luck!
Jan

SI
Posts: 21
Joined: Jan 2010

Thanks so much for the input. I just realized that I should have provided more information. I did not wish to make the post too lengthy. I have Stage IIIA, Grade 1.
I also have a history of multiple UTI's and Chronic Ulcerative Colitis along with some other digestive issues. I am really concerned the most about the bowel and bladder issues as they are already compromised. But I do not want to risk cancer returning either. I did seek a third opinion from another gynocologic oncologist when I had the two differing opinions on whether to have radiation treatment. It was the 2nd gyn oncologist who told me that the risks of radiation did not justify the reward. However several my chemo oncologist and radiation oncologist recently met together with several other regular oncologists as a team and they agreed on the recommendation for radiation. So now I have 2 gynocological oncologist specialists recommending against radiation and several other oncologists recommending radiation. It will ultimately be my decision, but gosh, it is a difficult one!!

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

Si, with what you just posted, first of all you are only doing the radiation as a preventative (as I read it). I was also told about the "benefits outweigh the risk" part too. You must remember that you do not have anything right now.

Here is another thought. No matter whether or get radiation or you don't, the following up is usually the same. CT scans and monitoring. usual PAP smears, etc. So its not like you get radiation and you don't see a doctor anymore. My gyn/onc also wanted me to have the pelvic radiation, but not my radiation/onc. I went with the radiation/onc's opinion. You can always get radiation at some other point.

I would ask the radiation doctors if you get radiation now and cancer shows up later, are you able to get radiation again? They will probably tell you no.

So many decisions! I wish you well.

Kathy
(By the way, I was diagnosed with Grade 2 IIIa endometrial aden.) I also had three c-sections and severe endometroisis prior to my diagnosis.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Has no one discussed you getting internal brachytherapy instead of the external pelvic? That's what I would do if I was Stage 1 or had a low-grade type of cancer cell. If you do get external radiation, ask for IMRT radiation. & if they don't offer it, ask where the closest facility is that offers it. IMRT is MUCH less damaging as the old-style 4-beam radiation, MUCH better. Well worth a couple hour drive if it's not available locally, in my opinion. I had 48 IMRTs & 3 brachys and no real lasting long-term side effects.

SI
Posts: 21
Joined: Jan 2010

No, I had not heard of IMRT and no one has mentioned either Brachy or IMRT. Thank you for the suggestion. I just googled IMRT and it appears much better, but it sounded like it needed to be directed at a tumor? Am I reading this correctly? I did not have a tumor after the hysterectomy and am hoping that there is not one now, but I had those pesky microscopic cells in the washings and clusters of microscopic cells on an adhesion on the colon. The adhesion was biopsied and I am hoping that means it was removed. I will ask questions about the IMRT and Brachy tomorrow when I see the gyn-oncologist (the doc who performed the hysterectomy in November) and who also recommended Megace instead of radiation. I also wonder if Megace can kill cancer cells or if it just keeps them from growing any larger?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was already considered in remission by my oncologist, with a clear CT-scan and a CA125 under 35, when I did all of my IMRT radiation and brachy, and I think that is tru of most of the women here. The radiation is considered rejuvant therapy, more an insurance that any stray cancer cells are zapped before they can form a tumor.

Megace is typically given after a recurrence of endometrial cancer. Megace does not kill cancer cells. It just starves PR-positive cancer cells of progesterone so that they cannot multiply. Do you know for sure that your cancer is PR postive? Recent studies showed that megace was only effective 8% of the time for PR-negative cancers, so I wouldn't take it as a sole therapy if I was PR-negative (& I am). But combined with tamoxifen (tamoxifen taken continuously; megace taken every other week in addition to the tamoxifen) this combo was effective 38% of the time in a clinical trial in holding the cancer in check, even when the cancer wasn't ER or PR positive. My gyne-oncologist said he likes to save megace for a possible time in the future when the cancer is progressing and blood counts aren't good enough to get chemo. Megace isn't harsh like chemo.

SI
Posts: 21
Joined: Jan 2010

That is really good to know. Thanks so much for the info. I will definitely ask about the IMRT and Brachy radiation this afternoon. Yes, the cells are positive for both ER and PR.
But I definitely would want those cells gone if that is possible, instead of just lingering and hungry and waiting there for an opportunity. And I am not sure how effective the chemo has been since the cells are Grade 1 microscopic. I read that the cells must be growing when the chemo hits in order for the chemo to work and that chemo is thus more effective on aggressive fast growing cancer.
My family history is full of cancer, colon, prostate, and mostly breast cancer. My aunt was on Tamoxifen for many years after a breast cancer lumpectomy, just as a precaution. She survived cancer and finally died at 88 from other causes. Her two sisters, one of whom was my mother, were not as lucky and both died at a young age from breast cancer. I had always expected breast cancer would appear at some point in my life, so was really caught off guard with uterine cancer.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

If they're talking about radiating those cells on your colon, that may be a lot more damaging than the general pelvic IMRT radiation I had. & the brachy I had was t help prevent a recurrence on the vaginal cuff, and they may be more concerned with what they thinbk is on your colon, so we may be talking 'apples and oranges' here. But brachy & IMRT are certainly BOTH subjects you want to discuss with your radiation oncologist.

Because your cancer is ER+ and PR+, megace may truly be a good choice for you. I wouldn't want to steer you wrong here, as it sounds like your individual cancer is quite different than what I'm dealing with.

SI
Posts: 21
Joined: Jan 2010

I saw my original Gynocology Oncologist today. After speaking with the team of oncologists that recommended radiation he still feels that radiation may not be a good choice for me. He said that my situation is difficult in that the research data is sparse on what the best course might be. (From reading the entries here, I think that is true for all of us with uterine cancer.) He said IMRT is used by nearly all of the radiologists here and he advised I seek out another independent opinion from another radiologist. So that will be my next step in this journey of uncertainty. He gave me a prescription for 6 months of Megace which he said had an up to 40% success rate of starving remaining microscopic ER PR cancer cells of hormones so they shrivel and disappear. He also said however, that he believed that the chemo would have been effective at removing all of the remaining microscopic cells and that if I did nothing further that he thought there was an 85% chance of no recurrence. His first estimate 6 months ago was a bit lower than that and the chemo oncologist had said 50%. (The gyn-oncologist that I saw for the third opinion had also estimated an 85% chance of no recurrence after chemo, but the radiologist oncologist thought my odds were significantly less without radiation.) He further said that with the ulcerative colitis and bladder issues coupled with my toxic experience with chemo, radiation damage and risk factors would be significantly higher with no more than a 1% to 2% gain in odds of no cancer recurrence.
Gosh, there is such a huge difference of opinions among the most knowledgeable of doctors and the choice is ultimately one's own to figure out!

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Hello im stage 1 and will be having the brachy Radition 5 rounds of it. i will be doing this in a few weeks since i just had my surgery they didnt say i was in remison yet not understanding but now im fully new to all of this to

but i want to let you know i have alot of fears my self going in to radition your not alone in the fears you have for sure now im stage 1 and you to im wondering why they are not doing the brachy radition on you instead since your same stage as me ?

my doctor told me its a 50/50 chance with the radition i can tell you that much meaning turly radition will help yes but its not alot of a chance it wont return it is only a 50/50 chance i think its up to each of us if we chose to do it or not

i will be asking my doc if we can hold off until med june so i can out weigh the goods of it and the bads of it and make sure its right for me and make sure my body is fully healed before going in to it

turly i think its up to each of us if we do or dont do it its not an easy choice and no mater our stage to here we have cancer brings grate fear then we here chemo or radition and we have even more fear some research we do on google can bring more fear to trying to out weigh goods and bads they will always tell you the bad 1st because they have to.

when does your radition start or is this not desided yet ? for me they said they have to see if im healed 1st then ill meet with my radition doctor .

again im not understanding if your like me why they are not doing the brachy but each doctor and woman is diffrent i would ask about that type through again im new to it and am in fear my self

SI
Posts: 21
Joined: Jan 2010

No, I am stage IIIA, Grade 1. I was upstaged to IIIA from Stage 1 after the surgery because the pathology report showed clusters of cancer cells on an adhesion that was biopsied. I also had positive washings. I have not decided yet whether to have radiation or Megace. However, my white cells just took a deep tumble again and it is now 5 weeks since the last chemo. If there is a problem with the white cells or bone marrow and the ulcerative colitis and the bladder, I am wondering whether radiation will even be an option at this point.
Why do your doctors wish to do radiation with Stage 1 uterine cancer? I thought that most of the time surgery was all that was needed for Stage 1? Was it a higher grade of cancer?
I believe that Stage 1, Grade 1 uterine cancer is the most common and that the chance of recurrence is very small.
Radiation is so scarey. The thought of cancer recurrence is even scarier, however.
Actually chemo was also a scarey decision. It seems that most people have tolerated both chemo and radiation quite well. I was not so lucky with chemo and managed to get a bunch of nasty side effects and now am struggling with the blood count...anemia and very low neutrophil count. Gosh, this is a tough journey, but it is of comforting to know that there are so many knowing folks here on this forum who understand, having lived the journey, and are so willing to offer their experiences and knowledge.

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

hi hun im stage 1 but im grade 2. he said the tumor was big and he wanted to do radition just to be sure it dont come back because of my size he says im at high risk it will return im not Likeing this doctor and thinking of making a switch in fact we called john starters cancers center and i think ill make a switch to them . but ya even with Raiditon he says its only a 50/50 % chance anyways im unsure to why i would need the radition my self since its stage 1 grade 2

i to thought it be the surgery and that was all :( so im trying to see a 2nd doctor and see his thoughts on it

thanks for sharing your story with me

kellyw314
Posts: 51
Joined: Jan 2007

My cancer was stage 1-C, grade 2 -- I too had a large tumor which had penetrated 60% of my uterine wall, yet confined to the upper third of my uterus - I received 27 external radiation treatments and did not have the brachy treatments because the location of my tumor was in the upper third - if it had been lower and closer to the cervix, I would have had the brachy treatments -- I did have some bowel issues which were maintained with immodium - bowel issues non-existent a year after treatment - no bladder issues ever

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