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new here... question about radiation... yes or no? new here... question about radiation... yes or no?

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Unread 12-02-2003, 02:06 PM
new here... question about radiation... yes or no?

Really hard to be put into the decison seat, isn't it? When I had my hsyt my mama made me decide if wanted to buried or creamated if something went wrong. Well as it happend, something sdid go wrong. My heart stopped and I was resussitated. It is hard to say, if the doctor said no more treatments was nessary Iwould not choose radiation. If I knew all the side effects that happened to me I wouled not choose it either. The problem was for me the doctor said my cancer hit 4 cm and needed radiation so I did . I regret it because of all the effects of it. My poor body is suffering for life. The prozac has been helping the emotiojnal rollercoaster. There were other factors to consider. I was newly married and my son was born at the time of hyst. A new husband and a new baby needs his wife and mama so I did it. I regret it, yes and no. I can no longer work, but i enjoy being a stay at home mom. He is truly my angel. Because of him we found dthe cancer and possibly deleted it.

I might have done just for my mother. My brother died recent before my surgery and I dont think she could handle if I died soon after.

I think you have to weigh all the factors in your immediate life. YOu cannot predict the future. ONly decide what is best for you. I always wonder if the cancer will wake up and spread. I have cancerhead still. I wonder if it truly goes away once you are diagnosed with cancer. Life is scary, you do the best you can and whatever happens do not blame yourself(or anyone else). God already kknows the answer and the tommorrows.

Women who wear teal are women of steel . And you are a woman of steel. Good luck to you and God to bless
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Unread 12-02-2003, 09:43 PM
Radiation Therapy decision

I am in the same boat about having to make a decision to have radiation treatment. Mine will be for a endometrial stromal sarcoma found during a total abdominal hysterectomy for a suspicious ovarian cyst. I did not have ovarian cancer, but they found a uterine cancer that is relatively rate. Mine is probably stage 1. They couldn't give a diffinitive answer from the pathology report as to whether or not there is a high probability that it will spread. They suggest radiation. I'm wondering too if linear accelerator radiation is worth the risks.

I plan to have a consultation with the radiation oncologist so I can get more information before deciding for sure. I'm also doing web searches to get more information on the effectiveness for my kind of tumor.

I too would like to hear from some of you who did chose to do the radiation therapy when it was "optional" or for stage 1. How did it go?
Unread 12-07-2003, 09:58 PM

Musikgrrl -- I was in nearly the same predicament as you last Spring. In fact I posted a similar question on this site, and was worried that I didn't encounter anyone who questioned the internal radiation. Depite my radiologist's urging and my parent's pleading, I had to go with what I thought was best for me. And for me, I felt my body had been through enough between a radical hysterectomy and external radiation. Not to mention, I am just in my early thirties and in love with my husband, and wanted to preserve what was left of our sex life.

Like you, I couldn't justify any additional alterations of my body or side effect with such a tiny percentage of improvement. I think the odds cited to me were that I was 90-95% "cured" after my hysterectomy and external radiation, and would be 95-99% cured with the internal. (I also read Fran Dresher's book, and remember she had similar odds.)

Admittedly, I've had two scares already with questionable paps, but they turned out okay. I don't have any regrets, and know I wouldn't have any regrets even if the cancer returned because I felt that I needed to give my body and my faith (and my vagina!) a chance.

Certainly, it's not that I look down on anyone who did choose the brachytherapy. I understand wanting to do all you can. But since it looked like I was going to live (I never doubted it) I had my quality of life in mind. What about the next 10, 20, 60 years??? For others, their quality of life would be compromised if they worried too much thinking they didn't do all they could. For me--I guess I'm the oddball--I know I would think the opposite. I would ruminate over doing "uncecessary treatment." Both choices are risky, but in different ways. I think that women are admirably courageous for either decicion they make about these and similar treatments.

Heck, I had to think long and hard about even having the hyst, and after that, I wasn't even going to do the external radiation. My family begged and pleaded, so I "compromised" by getting the external (in the very last week allowed, mind you) but not the internal. (The internal was bad enough--during and after. I can share details of the experience if you wish.)

I'm sorry we couldn't hook up earlier and you had to go through this alone. But I'm here now cheering you on for being true to yourself and standing your ground (even if you change your mind....if that's still possible.)

We rebels need to stick together!!!!
Love, MesaSky
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Unread 12-08-2003, 06:13 AM
new here... question about radiation... yes or no?

Way to go you two!

For what it's worth, having read all you have to say, I wouldn't do the internal raidiation either. I would make sure I was monitored closely, paps every 3 months, and take it from there.

Unread 12-08-2003, 08:26 AM
I'd Do It Again in a Heartbeat!

Having had both internal and external radiation for the treatment of surgical stage 1C, clinical stage 2B endometrial cancer, I would do both again in a heartbeat! When I was about to go though radiation in 1999, I told my gynecologic oncologist I had seen reports of some women opting not to have radiation and just monitoring and treating any recurrences that subsequently occurred with radiation later.

My gyn-onc stated that he was seeing some of these women, but that their recurrent disease was in some case not able to be effectively treated later. He advised that a number of them were unfortunately dying of their recurrent disease.

I am SO happy that I followed the treatment plan that my very experienced and highly-regarded gyn-onc believed was in my best interests to assure my future good health. I have virtually no long-term side effects from treatment, and never have to worry that there was anything more I "coulda, woulda, shoulda" done to improve my chances for long-term survival.

Best regards.

Unread 12-08-2003, 01:18 PM

Please read MesaSky's thread as you might find it helpful

Good luck to you

Unread 12-08-2003, 10:00 PM
Sheila re:Mesa sky thread

I saw that too. Mesa decided not to have the treatment and now her cancer has reoccurred. how sad.
I feel so bad and sad for her.
Unread 12-09-2003, 12:37 PM
not true

WAIT A MINUTE!!! Janie and Denton, etc. - don't get the wrong impression. The cancer that has reoccured in my lymph nodes has NOTHING to do with not getting brachytherapy. These lymph nodes are way up in my external iliac chain (side of abdomen) which would not have been affected by internal radiation. Internal is localized to the vagina. (These lymph nodes should have been hit by the external, however, so it's a mystery, really, why it came back. And actually, it's not 100%that the cancer has returned until they biopsy, so maybe it's scar tissue or a cyst or something else.) My doctors have assured me that the internal radiation would not have helped.

I abide by the decision that I have done the right thing for me about avoiding that internal radiation. I think it's so important to think, and just because it's the big C word of cancer doesn't mean that we have to lose our heads and just hand our bodies over to science. To me, it's always best to be minimally invasive (not to mention holistic--having the persepctive of the whole body and whole person and the effect on our whole lives) for ANY medical condition, cancer included. Doctors are not all knowing. They can tell you what is recommended in a text book but each human being is different.

That said, I adore and respect my doctor, and have learned a lot in the last year about letting doctors do their job (surgery, prescriptions, etc) while I do MY job (educate myself about the issue, live a healthy lifestyle, alter diet, do therapy.) But I think it's essential when we have a relationship with our doctors and they with us, which means we can make decisions TOGETHER. My oncologist completely supported my decision to decline the internal radition, despite what the radiologist's text book said. He said he understood my reasoning--the cancer wasn't even in my vagina, and actually, they never even found any in my cervix, which was the original site. He almost went as far as saying he would have done the same thing himself.

Where is Musik, anyway?? What are yout latest thoughts on the decision?
Unread 12-09-2003, 01:38 PM
new here... question about radiation... yes or no?

I am here... glad you clarified things Mesa. I wanted to say something but I didn't think it was my place.

That's the thing... the internal only treats the upper part of the vagina and is only useful if there is a stray cancer cell in that area. In my case I have to trust that there is not... that I will be in the 90% for whom it is not needed. Meanwhile I am to get paps every three months for the first year. After that I am not sure of the schedule. My surgeon (who is a gyn/onc) said that if it did come back it would be treated at that time with the radiation. So I decided to deal with that if necessary rather than opt for damage that is most likely not necessary.

External was never suggested to me. My cancer was in the uterus... endemetrial cancer. However, some had traveled down to the cervix but was only on the surface (inside). The fact that it had spread to the cervix made it stage II instead of stage I. Recommending a consultation with a radiologist is standard procedure at that point. My gyn/onc just wanted me to see what the radiologist would recommend... to maybe consider it as a preventative. He assured me that at this time there is no cancer anywhere. I am not refusing treatment for an existing cancer.

My feeling is that if he really thought I should do the internal for sure... he would have urged me. I was told it was my decision. I really disliked the radiologist. She of course recommended the internal (but not external ... specifically did NOT recommend that). I expected she would recommend something... seems like that is her job. But we had poor communication. She dismissed many of my concerns with seemingly very little caring. She physically hurt me during the exam... something my other doctor did not do even though he had examined me much earlier post-op than she did. How could I trust her to not hurt me with the internal radiation procedure? ... and she already said I would most likely suffer permanent vaginal damage. I read somewhere that younger women do better with that. I am in my 50's and the surgery itself has really messed things up.

I had no pain, no discomfort, no problem periods, no reason to ever feel like the surgery was "the best thing I ever did" as I have seen others say. The was totally against my will, forced on me because of the cancer, highly traumatic, and devastating. I feel violated... mutilated... I really did not think I could handle anything more. My stress level was so bad when I was being asked to consider the radiation that I wished I had never woken up from the surgery. Sorry to those of you who find my attitude horrifying but I am one who is used to going years without seeing a doctor... who has rarely ever had a prescription... who had never been in a hospital except for childbirth (and even then only managed to stay one night each time).

I grew up with a hypchondriac (sp?) mother... and I guess I have wanted to swing the other way. Now I feel trapped by these doctors appointments and the after effects of the surgery and I hate it! I want my "real life" back. I want to get the divorce that would have happened by now if this hadnt all started almost a year ago. I am sad that my home business failed because of all this stress and trauma and my inability to devote any time to it this year..... what should have been my ticket to independence. I want to be free to be with the man I love... who is 600 miles away but ,who through daily online chats, was my major source of emotional support through all of this. But now it will never happen as he will not get involved with a married woman beyond the internet friendship that it is. I have known him now for 15 months... have loved him for about 10 months now. He doesn't know I actually love him or if he suspects he doesn't say anything. I know he cares for me... he shows it in many ways... but he is not going to let himself feel more even if he is tempted to. I don't know if I should just go ahead and clear the air or not. It looks like I have to stay married... a life sentence.... because of the health insurance that I guess I need... my husbands health insurance benefits.

Besides.... not sure how I would feel now about being with this man now.... I want to... but I would want a complete relationship and this surgery has destroyed me sexually. I relied more than some on the uterine contractions it seems.... now I just cannot respond properly or have a complete release... its so frustrating. I am frustrated all the time now physically. Have had no relationship with my husband for many years... he left me to "my own devices" so to speak. But now nothing works and I feel like I am without hope. The hope of eventually being with this man I love... who I still chat with every day... sometimes more.... seems impossible now. It was that hope that got me through the surgery and the recovery.... but I am losing that hope now. Besides, this man is only in his 40s and now I feel like I have aged tremendously because of this. No lubrication.... messed up sexual response... hair falling out!!! They take all my female organs and now I cannot even have nice hair? I don't know if it is the lack of hormones (I definitely had signs of still having some hormones before the surgery) or something to do with the surgery itself... but it has been over 5 months now...

Sorry... I guess this turned into a rant... but I am so unhappy now. I haven't even shared all of this with the man I love because it's just too negative... there is nothing he can do about any of this now so I would rather spare him. I am able to enjoy what we do share so I want to keep it like that for now.

I do not regret turning down the internal radiation. If I need to deal with that later I will... I will know it is necessary. That would be different than subjecting my body to further damage for no reason. As it is, I have constant vaginal discomfort. I am starting to wonder if it is possible for those ligaments they attach to the vaginal cuff to be too tight. My surgeon says everything LOOKs fine.

I finally asked for my records... they arrived today but I haven't opened the envelope yet. Not quite ready all of a sudden....

BTW, my pap was 3 weeks ago... are they supposed to call me either way or do I assume if I have had no call in 3 weeks that it was ok? I don't think I should have to make a long distance call... shouldn't they have called me?
Unread 12-09-2003, 01:43 PM
new here... question about radiation... yes or no?

one more thing.... when they were asking me to consider the radiation, I had JUST started to feel semi-normal physically. I could walk a brisk 3 miles. I was no longer napping. I had tickets to a couple of concerts that I was looking forward to (after weeks of feeling miserable all the time). I just could not bear to take a step backwards. I would have gone into a horrible depression.

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