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

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  #1  
Unread 10-07-2003, 01:42 PM
new here... question about radiation... yes or no?

Hi, I have not seen this problem addressed so I will ask for your input. I have to make the decision as to whether or not I will have internal radiation treatments. Three to five treatments each one week apart according to the radiologist. I have noticed in this forum that many of you have gone through this but I have not seen anyone say that they refused treatment. Am I the only one who is considering saying no?

My TAH was June 26th. In February I was told I had a precancerous condition and should have a hysterectomy. My gyn wanted me to get a second opinion from a oncologist surgeon which I did in April. At the time he said there were probably cancer cells mixed in with the precancerous cell. The surgery was scheduled for June 3rd. On June 2nd I received a call informing me that the surgery would have to be postponed. This was very difficult as I was terrified but geared up for it at that point. Finally had the surgery on the 26th. They took everything including some lymph nodes to biopsy. After the surgery I was told that I did have cancer in my uterus and that I would get the results of the lymph node biopsy in a few days. I was told a few days later that the nodes were clear and no further treatment was needed.

A month later at a followup appointment I was shocked when the doctor told me he wanted me to consider radiation because the cancer had spread to the cervix. It was grade 1 stage IIa.

I saw the radiologist 2 weeks ago and she suggested the internal treatments. I was told that there will be permanent damage to my vagina. I don't think I can handle that if it is not necessary. I was told there is a 10% chance of the cancer returning but the treatments will reduce that to 5%. I am not sure I want to suffer the side effects when I have a 90% chance I don't even need the radiation.

Neither my regular gyn nor my surgeon are insisting I do this. I am supposed to weigh the pros and cons and decide myself. Has anyone here been in this situation? Did anyone say no? Has anyone regretted their decision... either way?

I should also mention that my vagina is still tender and irritated for some reason. The radiologist said I was not ready to start treatment when she saw me 2 weeks ago and my gyn said the same when he saw me a week ago. I went to him to see what could be done about the discomfort. Apparently I just need time. It's healed but just uncomfortable for some reason.

I know the radiologist nurse is going to be calling me for my decision any day now. If I say no, is everyone going to think I am stupid? That I am taking a foolish risk?

Oh... the surgeon has assured me that at this time there is NO cancer anywhere. Clear margins, clear lymph nodes, that pelvic wash was clear.... so why would it return? I want to believe that there is no reason that it would.

This entire thing has been so traumatic and stressful that I don't know how I can subject myself to anything more. I have panic attacks just thinking about it. I need to put this behind me and start to feel normal again. My energy is returning, I am beginning to work out, and I have even been able to enjoy a few activities. I went to a concert the other night and didn't get exhausted I just want this to be over! If I suffer permanent damage from the radiation it will never be over
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  #2  
Unread 10-07-2003, 02:33 PM
new here... question about radiation... yes or no?

Hi Muz...

To start off, the whole thought of having cancer is scary to all, we all know that. I did not have to have radiation, I had chemo BUT i do believe that I personally would have done whatever treatment might have been needed to be cancer free.

I am sure that at one time or another we all tossed around the idea of the "should I, shouldn't I". I went along with the "should I", only because I did not want to regret my decision should something arise in the future.

This is a tuffy and only you can make the final decision.

Keep in touch.
Rosalie
  #3  
Unread 10-07-2003, 07:22 PM
Been There and Done That

Hi, Muzikgrrl--

I am a four-year endometrial cancer survivor. I had both internal and external radiation. I needed both types of radiation because I had a number of risk factors for recurrence. The reason I needed the internal was because my tumor was very low in my uterus (it began in what is called the "lower uterine segment"). Although the pathologist concluded that the tumor had NOT invaded my cervix, myy gynecologic oncologist, who had over 25 years experience and who was listed in a number of Best Doctors' publications, disagreed with the pathologist's findings. My gyn-onc said that I needed the radiation because he believed the tumor had invaded the cervix and that the internal radiation would optimize my chances of preventing a vaginal recurrence, where tumors that have invaded the cervix are likely to recur.

Only you can make the decision, but I know if it were me, I would want to do everything possible to maximize my chances of not having a recurrence of cancer. My gyn-onc told me that he sees women who had recurrences of endometrial cancer in their vaginas for whom later successful treatment was not possible.

After I followed my gyn-onc's recommendations, I had no regrets, as I knew there was nothing further I "could have, would have, should have" done to ensure the best outcome possible. I've enjoyed excellent health since completing treatment in August 1999, and have no regrets whatsoever. I'm having more fun in life now that I ever would have imagined possible before cancer!!

Good luck to you.

MoeKay
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  #4  
Unread 10-07-2003, 08:41 PM
new here... question about radiation... yes or no?

Hi

Tough decision and only you can decide. Once we have cancer, decision making is alot about what we will regret the least in the future.
If I were you, my decison would lean toward whatever the gyn/onc doctor recommended. Maybe you could even get a second gyn/onc doctor opinion.
Your ob/gyn doctor is not a gyn cancer expert.
Best wishes to you.

oxox karenann
  #5  
Unread 10-07-2003, 11:30 PM
new here... question about radiation... yes or no?

Hi Muzikgal

As the other ladies have said, only you can decide. I had internal but this was because the tumor was not reacting effectively to the chemo and external radiation treatments. The internal did work. Hun, as the others have said, we will all do whatever it takes to get better. I personally had the dreaded damage from the internal radiation. I live in Holland and for some doggone reason was told NOT to dilate during treatment but to wait. Where you are I think medical care and more importantly medical communication is much better than here.

As I have said, I did have damage (shortening of the canal) I'm working on this problem. Would I do it again? You bet! If there was one iota of a chance of there being something there that was not gone, I would for sure do it again. Keep in mind too, that since you will be menopausal, you will have some probelms vaginally as well.

Weigh things carefully hun.... this is your life.
  #6  
Unread 10-08-2003, 09:32 PM
Muzikgal,

I did have internal radiation, but not like the one you will be having, mine was three days in a row, where I was hospitalized, because I was radioactive at the time.

Now, this is just me, but my kind of cancer cervical cancer 1b, usually doesn't recur after a radical hyst, but mine did. I had radiation and internal radiation, which gave me almost a year of remission, before I recurred again, which I'm doing chemo treatments, since Jan.

My cancer, is very agressive, and I'm not following any of the rules for my type of cancer. You never know what will happen, I too was given 90% chance of recurrence after my initial surgery. You just never know. I don't want to scare you, but I want you to know the other side.

This is definately your decision, and a very hard one. I like the advice of doing what you will least regret in the future. However, you can take the chance that you won't have a recurrence, then deal with radiation, if you should happen to recure later. Your choice.

I did/do I guess have permanent damage from radiation, but mine isn't in the vagina, mine all has to do with my bowel movements. BUT, I'm really not convinced it was all the radiation. I think it started after my rad hys. not sure. BUT, it is just something else to live with. Just like having to put on my contacts every morning to see. I have to run to the bathroom when I have to go. I have no control of stopping it until I get to the bathroom. I'm getting really good, and figuring out that I have to go before I have to go. Sometimes, I get there and it was a false alarm, but I'm willing to deal with that, so I won't have an "accident".

Anyway, sorry for rambling. And I hope this makes sense. I just finished chemo, and you know sometimes the brain isn't in the right mode after that.

's and ers to you..
  #7  
Unread 11-30-2003, 09:07 PM
new here... question about radiation... yes or no?

I didn't realize it had been so long since my original post. That was a very stressful time. I still cannot believe that I was expected to make the decision myself.

I didn't hear from anyone here who had decided not to have the radiation. I do know from reading Fran Drescher's book that she said no to it. I decided to say no. I was under too much stress already and felt like it would just put me over the edge.

My gyn oncologist who did the surgery had only asked me to talk to the radiologist... to possibly consider it as a preventative measure. Because the radiologist said that I would most likely suffer permanent damage to my vagina from the radiation and because there is a 90% chance that the cancer will NOT return, I felt like I had to just believe that it will not return. My gyn/onc said that if it does return it would be easily treated. Not sure exactly what he meant by that.

Maybe if having the radiation would have lowered the odds of the cancer coming back to zero, I would have done it. But that was not the case. I could have the radiation, suffer the damage, and still have it return.

I have decided to deal with radiation if I have to, if it does come back. Meanwhile I am having pap tests with the gyn/onc every 3 months for the first year. I am not sure what the schedule is after that.

So... am I the ONLY one who has decided not to go through with the internal radiation... given the choice? Only the internal was recommended by the radiologist and when I voiced my concern over damage to my vagina she said then maybe I shouldn't do it. She made me feel like I was being shallow or something to care about that. But I was already having alot of vaginal discomfort and I still am ... at 5 months post op. I don't think I could stand any more discomfort.

BTW, I had my first post op pap test 2 weeks ago... do they notify you either way? I forgot to ask and I haven't heard anything.
  #8  
Unread 11-30-2003, 09:25 PM
Damage?

What kind of damage to your vagina will you have? I had internal radiation and had NO damage whatsoever. I think your decision would depend on how extensive the damage might be and how long it would last. Can't the doctor do some kind of internal radiation that won't cause damage? I had three days of internal, high dose, radiation and had sex 2 weeks later without any problems. This was 4 months ago and I still have no vaginal problems. Most women who have internal radiation don't have damage to their vaginas so you might want to ask your doctor why you would have damage.

For me, if I refused treatment, and the cancer came back, I would never forgive myself. To me, few things sound worse than the treatment for reoccuring cervical cancer. I'd do anything to avoid that surgery.

If the cancer can be easily treated in the future, why can't it be easily treated now?

Of course it's your decision, just make sure that you are armed with all the facts first. Find out what the alternatives might be, in the short run, and in the long run.
  #9  
Unread 12-01-2003, 04:41 AM
new here... question about radiation... yes or no?

Hi there

Ive read your thread quite a few times now! and i admire your decision but do you not think you should get a second and third opinion from other gyn/oncs? My cancer was a grade 1 stage 1a so i was told no treatment but i have done an awful lot of reading on the internet on gyne cancers and i wondered if you had read up on the 'treatment' articles that are on the web? Most seem to suggest that for anything higher than grade 1 stage 1a some kind of treatment is necessary. Maybe im reading it wrong. My own personal opinion to be honest would be 'to hell with a problem vagina i dont want cancer again'. That is just my own thoughts. I wish you well.

Take care

  #10  
Unread 12-01-2003, 06:08 PM
new here... question about radiation... yes or no?

Hi Muzi...

I totally agree with Jane and Sheila. I too would never be able to forgive myself if my cancer came back because I refused treatment that was definately available to me.

No one can make a decision like this for you but I too hope that you have thought things through thoroughly and explored all options.

Wishing you lots of good luck in your journey.

Rosalie
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