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Old 07-03-2008, 05:35 PM   #1
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I am so undecided - Please tell me about your experience

I found out about a six weeks ago that I have cervical cancer. I am in 1b1 stage and I have the option of surgery or radiation therapy. The radiation oncologist freaked me out when telling me the what if's. The scariest is that I will have to use a dialator for the rest of my life, could have damage to my rectum and leakage of feces in my vagina, internal radiation (probes inserted into my rectum, vagina, bladder) and a whole host of other complications. So I opted for surgery; a radical hystorectomy. Today I had my pre-opt visit with my oncologist and he gave me a whole host of other complications some of which are the same as those of radiation. He also told me I could need radiation even after the surgery.

I honestly would like to have the surgery but I am afraid of having to have the radiation too and of the possiblity of fistuals and bladder failure - not to mention the fear of surgery, being out of control.

Is there anyone who would like to discuss their experience with radiation and with hystorectomy?

Last edited by Toomuchinfo; 07-03-2008 at 05:41 PM. Reason: spelling

 
Old 07-03-2008, 06:36 PM   #2
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Re: I am so undecided - Please teel me about your experience

(((((TooMuchInfo)))))) I had a hysterectomy for cervical cancer Ia1 just 2 weeks ago. I am not certain of the differences betwee Ia1 and Ib1. I highly recommend you get a second opinion. Are you currently seeing a gynecological oncologist? If not, I HIGHLY recommend you get to one.

Have you looked at what information is available at the National Cancer Institute? If not, search for it. Then enter cervical cancer. It will give you a lot of really good information.

Please ask any questions you think of. There are many wonderful women here to know a lot of information and who can offer a world of support.

You are in my thoughts and prayers!

 
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Old 07-04-2008, 06:58 AM   #3
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Re: I am so undecided - Please tell me about your experience

Quote:
Originally Posted by Pickle Eyes View Post
(((((TooMuchInfo)))))) I had a hysterectomy for cervical cancer Ia1 just 2 weeks ago. I am not certain of the differences betwee Ia1 and Ib1. I highly recommend you get a second opinion. Are you currently seeing a gynecological oncologist? If not, I HIGHLY recommend you get to one.

Have you looked at what information is available at the National Cancer Institute? If not, search for it. Then enter cervical cancer. It will give you a lot of really good information.

Please ask any questions you think of. There are many wonderful women here to know a lot of information and who can offer a world of support.

You are in my thoughts and prayers!

Hi Pickle Eyes,

Thanks for your advice. I read about your experience and was happy to know you had the best possible outcome. Did you have the radiation option?


I have a gynecological oncologist and a radiation oncologist. I sought second opinions from two others from each profession. They all said the same thing, radical hysterectomy or six weeks of external radiation and two weeks of internal radiation.

As I understand it, my cancer is visible to the naked eye and between 1 an 2 centimeters in size. All of the Doctors expained the possible side effects of each procedure. I am terrified I will make the wrong decision and regret it for the rest of my life. I am trying to think which of the worst case what if's I can live with if the worst case happens. The recovery time is also an issue, I am single with adult children and young grandchildren but I still need to earn a living. I am a contractor/self employeed so I do not have the disability payment options that most people have. I will go to the NCI website for information.

I came to this site to discuss with REAL women their experiences with cervical cancer. The Doctors are men who could never personally experience this and women who had never personally experienced it. I tried to find an oncologist who had personally experienced cervical cancer but there are none in my area.

Thank you so much for the advice and for taking the time to reply. Please keep me posted as to your recovery.

 
Old 07-04-2008, 10:29 AM   #4
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Re: I am so undecided - Please tell me about your experience

Hi again, TooMuchInfo, I am recovering well. I over do it a little every now and then and end up resting in bed more the next day. That's what I'll be doing today. :/

Neither radiation nor chemotherapy were part of my treatment plan. My doctor found mine so early. From what I've read, stage 2 cervical cancer can require either or both. It sounds as though you will need both (from what I understand you said). So I guess, at this point, you need to pick the doctor who seems most knowledgeable, has fewest complication rate, and whatever other requirements you have (like your comfort level with the doctor or distance).

It really sucks when our body takes us to places in our life that we don't want to be and there is no real way out of. The loss of control is a real feeling. I go through bouts of having meltdowns because I can't control my body (re the cancer). It is frustrating.

I guess the good news is, there are many skilled doctors who know what to do to extend your quality of life as best as medical technology can allow. There is a very high survival rate.

I forgot to ask, when did you schedule your hysterectomy? What type will the doctor do? abdominal, or laparoscopically assited vaginal, or vaginal.

YOu are in my thoughts and prayers (((((hugs)))))

 
Old 07-04-2008, 01:17 PM   #5
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Re: I am so undecided - Please tell me about your experience

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Originally Posted by Pickle Eyes View Post
Hi again, TooMuchInfo, I am recovering well. I over do it a little every now and then and end up resting in bed more the next day. That's what I'll be doing today. :/

Neither radiation nor chemotherapy were part of my treatment plan. My doctor found mine so early. From what I've read, stage 2 cervical cancer can require either or both. It sounds as though you will need both (from what I understand you said). So I guess, at this point, you need to pick the doctor who seems most knowledgeable, has fewest complication rate, and whatever other requirements you have (like your comfort level with the doctor or distance).

It really sucks when our body takes us to places in our life that we don't want to be and there is no real way out of. The loss of control is a real feeling. I go through bouts of having meltdowns because I can't control my body (re the cancer). It is frustrating.

I guess the good news is, there are many skilled doctors who know what to do to extend your quality of life as best as medical technology can allow. There is a very high survival rate.

I forgot to ask, when did you schedule your hysterectomy? What type will the doctor do? abdominal, or laparoscopically assited vaginal, or vaginal.

YOu are in my thoughts and prayers (((((hugs)))))

Hi Pickle,

My options are either radiation therapy or radical hysterectomy. If I opt for surgery(abdominal, scheduled for July 14) and my lymph nodes are cancerous then I will have to do radiation as well. The CAT scan I had 4 weeks ago did not show cancer in my lymph nodes but, as you know, it is a crap shot in surgery. If I opt for radiation I will require 5 weeks of external and 2 weeks of internal. The internal radiaton SUCKS. They will stick probes in my vagina, rectum and bladder- all at the same time- and I will lay on the table recieving radiation for 2 hours. After the therapy is complete, I will have to use a dialator for serveral minutes everyday for the rest of my life.

GOD forbid I forget, The radiation thins the walls of the vagina and without the daily dialation (or sex 4 to 5 times weekly)the vagina will fuse shut. I had made up my mind to have ssurgery but now I believe I should have radiation. I do not want to go through both. I have until Monday for my final decision.

I guess I am trying to find someone who had the same options as do I and talk about which they choose and their results.

Thank you so much Pickle. Writing to you has helped me sort this out in my mind. I have talked with my family and friends but this conversation has helped me more. Seeing my options in writing helped my see the most logical choice.

Take care and you are in my thoughts.

Last edited by Toomuchinfo; 07-04-2008 at 01:20 PM. Reason: spelling

 
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