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Radiation therapy or not! Radiation therapy or not!

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Unread 02-02-2004, 07:00 AM
Radiation therapy or not!

I would appreciate any input from people who either have or have not followed through with radiotherapy.

My aggressive endometrial cancer, discovered after a hysteroscopy. A week later I had the full works and it was first diagnosed as stage 1a with no lymph node or cervix involvement. Christmas Eve the pathologist upgraded it to stage 2b, saying it had just barely gone to the cervix - I guess that is somewhat like just being a little bit pregnant!!!

My gyn/onc thinks I don't need radiation, she thinks it is overkill, but says maybe internal would be sensible just in case. The radiotherapy people want to do both internal and external. The senior pathologist says they are right because it just barely involved the cervix.

Today I talked with both gyn/onc and radiotherapist. He realises my poor battered body will not take the external therapy due to a hip replacement that went wrong last June and a staph infection the hospital gave me which just won't quit, and keeps my haemoglobin low at times. He thinks I should have the internal - just in case - to kill any microscopic cancer cells which may be headed for the vagina. Internal will not help if the cells go to the lymph nodes.

My first question is: If there is no cancer there, what are they going to zap with radiation?

My second question is: If I only have 10% chance of recurrence without radiation and 2% chance of recurrence with radiation, why put myself through it?

My third question is: Has anybody decided not to go ahead with radiation and been sorry they didn't?

My fourth question is: Anybody who has had internal radiation, would you please tell me about side effects and treatment? I am told 6 treatments only, 3 per week for 2 weeks, outpatient trip to hospital each time.

Any information would be greatly appreciated. I only just discovered how to post on this site!!!

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Unread 02-02-2004, 04:30 PM
Radiation therapy or not!

If I could decrease my chances of dying from cancer in five years from one in TEN, to two in a HUNDRED, I'd do it, no doubt about it.

I had radiation, both internal and external, but my internal was in the hospital for three days. The side effects from the internal were NONE. I mean it, not one single thing. From the external treatments I was having bladder urgency before the internal. That problem was over when I finished the internal. I do have more frequent bowel movements, but that too started with the external rads. But it's really not a big deal. I have some scar tissue in my vagina, but it hasn't caused any problems except for some occassional, very, very,light spotting after sex.

There is no way to know if there are cancer cells still in the area. When I went to the hospital for my internal there was NO evidence of the tumor. Chemo and external rads had killed it all, as far as they could see. BUT they didn't know for sure if every last cell was gone and it only takes a few cells for it to begin growing again. The internal was 'insurance'.

A question you might want to ask yourself, if you choose not to have the surgery, is how you will feel if your cancer comes back and you have to have pelvic extenuation surgery. (I'm not sure of the spelling.) Will you second guess your decision to have radiation? If you don't give yourself every chance to be rid of the cancer, can you live with the decision if you guessed wrong? How would your family react to a reoccurence? For me, there would be no question. Six trips ito the hospital is nothing compared to extensive pelvic surgery and/or death. I wouldn't want to make a mistake with those two things being the possible outcomes of such an error.

Of course the decision is yours, but please weigh it carefully and consider everything.

Good luck,
Unread 02-03-2004, 02:12 AM
Radiation or not

Thanks Jane for your input. I tend to agree with everything you say. I believe if I was not so ill anyway from the hip I would not hesitate having the radiation. I just don't want to be any worse than I am.

My mind is still open. The radiotherapist has given me a few weeks to decide and I intend to think long and hard. I am 64 and have no-one but myself really to worry about. My mother and my children agree with me that they would rather I had a shorter life with more quality than a longer life with less quality. They have watched me this past year not enjoying my life at all. However it seems there is little or no side effect from internal radiation except vaginal scarring - which the Dr did tell me about.

As for sex ... I'd have to buy a manual, it's been so long! (grin)

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Unread 02-03-2004, 07:31 AM
I had the choice also

I was in your shoes except they wanted me have external and internal. My surgeon and the tumor board said I did not need radiation. I went for a second opinion and they said I did. Then I got a verbal third opinion and they also said yes to radiation.

Internal radiation has less side effects than external radiation.
You should ask them how many total rads they will be giving you.
They put blocks in to block areas so they don't get radiation. However I was told by my proctologist (from Mayo's) that anything for 5,000 could (again could) cause some proctitis. If it hits 7,000 rads then there is a stronger chance of proctitis.

Ask the radiation oncologist to give you satatistics on the side effects. You may have to use a dialator to keep the vagina stretched. I know it sounds bad - but I do it and it is very easy.

I am not a doctor - but if it improves your chances of a recurrence then I would do it.

I hope this is helpful.
Unread 02-03-2004, 09:36 PM
Hi Heather...I agree completely with the others who have

replied to your post. I had a hyster. in June for uterine and cervical cancer. I was told that they thought I was finished with treatment. I received a call from the doctor a week later telling me that the pathology reports showed that the cancer was invasive . They told me that I should have the 5 weeks of radiation treatments and then the internal radiation. I went through both without any difficulty. I also asked why if they took out the uterus etc. there would still be a chance of cancer there and was told that the radiation is needed as a safety precaution. I would advise that you go through both. Your quality of life will not change due to the radiation. If you keep a positive attitude things will go by quickly and you will feel that you have done everything you could to prevent further problems. I had minor side effects such as bladder control and diahrea that could easily be controlled, from the external radiation and no side effects at all from the internal radiation. I do use a dialator twice a week but that really isn't a big deal. Good luck and remember that you are in our thoughts and prayers. I am 63 years and hope to live many more.
Unread 02-04-2004, 04:05 AM
Radiation therapy or not

Katiebells and Maggib,

Thanks for your responses. You both mention dialators. I know nothing about that.

I will contact the radiotherapist and ask more about the rads. I did ask what type of radiation and he told me, can't think at the moment what he said.

He explained and showed a sketch of a small cylinder about the size of a tampon which is inserted and a metal shield protects further down the line. He told me after insertion they release a dose of radiation (perhaps this is the liquid radiation somebody spoke of in an earlier post).

He also told me there were no side effects at all - I just simply do not believe that - but when questioned further he said there may be some vaginal scarring and dryness which could affect sex.

All I know at this point is 3 treatments per week for 2 weeks, making 6 treatments total. My health would not take external radiation according to the radiotherapist so he would not give it even if I was to agree (which I won't) so he made that decision for me in a way.

Unread 02-04-2004, 07:56 AM
Radiation therapy or not!

Heather - I am 36 and still would like to be sexually active so the vaginal scaring they described was a big concern for me. I am 4 months out of radiation and I do use the dialator 3-4 times a week. However my dctor. said that if you are have sex two times a week it is better than a dialator.

I was also told by a nurse that the dialator is used if you are not having sex. I don't have any trouble with dryness at this point but that is a side affect. There are risks with radiation but they are small - just make sure you ask a lot of question and go to a good radiologist. Their equipment needs to be modern and designed for the vaginal cuff.

They type of radiation you are having is called brachytherapy. I really would not be very concerned - but it is nice to have a friend or love one waiting for you because it can be scary. The nurses really try to make you comfortable -

Good luck!
Unread 02-04-2004, 11:41 AM
Radiation therapy or not!

I don't think your doctor is lying. There really aren't many after effects from internal radiation. The only one I have had is slight bleeding after sex due to a spot of scar tissue high up in my vagina. My radiation oncologist said that if I had sex once a week or so that would keep the vagina open. I've been doing that since 2 weeks after my internal last July and I have been fine. Sex is just like it always was, I can't feel any difference and neither can my husband.

I use premarin vaginal cream twice a week. I insert it when I go to bed. The doctor said it would help build up the walls of my vagina because both radiation and menopause tend to thin the walls. I am 57 and it appears that I am through menopause. (I never really had symptoms.)

Really, there just aren't many side effects from internal radiation other than those that might effect the vagina. Having sex or using a dialator prevents those problems.

Unread 02-05-2004, 12:53 AM
Radiation therapy or not!

Thanks ladies. I don't like the idea of using a dilator. Kateybells who says I don't still want to have sex at 64? Sure I do, just don't have anyone to have it with!!! Yet!!! I am working on it!!!

I don't think the doctor is lying, just not telling the whole truth until pressed,and that annoys me.

I don't have any choice about radiotherapist. I can go to another hospital 100 miles away but that's it, and it would be almost impossible for me to get there. There are only 2 places in Adelaide where I can have radiotherapy. I'm sure the equipment would be recent though.
Unread 02-05-2004, 09:55 AM
Radiation therapy or not!

Heather - 64 is a great age - I am sorry.

I have a friend who is 65 and had uterine cancer and they gave her external and internal. She also would like to continue her sext life - I suggested Match.com. She is going to try it. Anyway
she decided that a vibrator is less offensive to her than a dialator.
Ask your doctor if you can use a vibrator.

I went to a store and bought a vibrator (never did that before)
I got a very realistic simulator. Anyway that might help you.
The dialator looks like a candle - it is not unlike sticking a tampon in, you get use to it.

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