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radiation symptoms

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

I would appreciate hearing from anyone that has gone thru vaginal radiation. My name is Nancy and I had a marble size vaginal tumor and 2 lymph nodes removed in Jan 2005. The biopsy on the incision tissue and the lymph nodes, came back "clean." However, 6 weeks later my surgeon called and reccommended 5 days a week, 5 weeks of radiation. I am scared to have that done, because of the possibility of injuring other vital organs in that area. Like perferations of the uretha,bladder,rectum,intestines etc. If you could let me know if you had radiation, what effects you had, and how long did you feel ill?

SharonEL's picture
SharonEL
Posts: 21
Joined: Jun 2003

Hi Nancy,

I am sorry but I am not sure I understand your post. Do you have cancer? If the tissue came back "clean" why is your surgeon recommeding radiation? Do you have a copy of your pathology report?
Did you have a Gynecological Oncologist do your surgery? Have you seen a Gyn/Onc?
Sorry to ask so many questions. I had vaginal cancer. I had one postive lymph node and the possibility of vascular invasion. I had 25 external radiation treatments and 3 High-dose internal treatments. I would make the same decision again.
But I would not have done it without a very good reason.
Sharon

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

My tumor & lymph nodes were removed and the Dr. told me he was confident he got all the cancer. Then six weeks later he called me and said that he was no longer confident that he went deep enough during surgery, and to get radiation. That is my reluctance. I don't want to get radiation just because he is reccommending it to cover his rear end. Yes he was a OB/GYN Onocologist from UC Davis medical center in Sacramento, Ca.
I am scheduled for a followup pap May 12th, so I am refusing radiation until I have the results back. The surgeon has called me twice, sent me a certified letter, and contacted my local OB/GYN. I think he is just trying to CYA, as he took my biopsy report to a tumor board, and they recommended radiation, as chemo doesn't work on my cancer. My cancer was actually half way up the right side of my vagina, but the surgeon deemed it vulvar cancer, not vaginal cancer. I have been so upset about the insisstance of radiation when I don't know if the cancer cells are present again. I have talked to alot of patients that underwent radiation, and they tell me they wouldn't do it if they were me. There are so many nerves, and vital organs in the groin area, I am afraid of damaging my rectum,urethea,bladder or intestines should I opt for radiation. I am mainly seeking advice from other vulvar cancer patients to see if they suffered damage to other healthy organs because of the radiation.

Appreciate any light you can shed, or any referrals you can make.

Thank You

Nancytahoe

seaarnold
Posts: 1
Joined: Jul 2005

In reply to your question I will tell you my story. I was diagnosed with Stage II Vaginal cancer in April 2004. Things moved really fast and I had interstitial brachytherapy, then five weeks of external radiation and chemo. My answer would be yes to have the radiation. If it is not treated aggressively the chances of bladder cancer are very high. I do have some ancillary problems with a rectal stricture but the doctors tell me I have a 70% survival rate.

The chemo was to stop any cells that had got loose into my system. It was not easy and there are physical side affects even now. Radiation also causes atropy of the vagina and destroys all the lubrication. I was also nauseous with the radiation as well as the chemo; however, I am glad to be here

I am glad to find this site. There does not seem to be anyone around who has gone through this.

cancernomore
Posts: 3
Joined: May 2005

Hi, I am new to this site and I am hoping for some help and advice from anyone in my shoes.

I am responding to the radiatin question. I was diagnosed with vaginal cancer in July and had surgery in August. I started chemo and radiation at the same time. Radiation was awful. Of course it wasn't painful at the time, until my skin started to break down. It has been six months and I am still experiencing some "yucky" stuff. My bladder always feels sore. I wake up all through the night to potty. I never feel like I have emptied completely. I have very weak pelvic muscles now. I have been trying to do kegal exercises but I can't even tell if I am doing anything. I guess the part that I hate the most is that I still can't have intercourse with my husband. Everything is still very raw and sore. My vaginal walls are beginning to atrophy. It is a mess and I don't have anyone nearby that has gone through this. I was told that vaginal cancer is very rare especially for someone my age, I was 39 when diagnosed.

Does anyone have any words of wisdom. I just don't know what is normal and what is not and how long will I have these problems.

My lower stomach is so sore and thick from the radiation damage. I can't even lay on my stomach anymore. Even my butt is tender. It hurts just to sit on my "sit bones"

Help!

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

I am curious as to how you are feeling now? It's August now, and your posting was done in May. I corresponded with another lady Rhonda, RX COX KY, I believe is her screen name on this web site. She is having a terrible time from the radiation she received. She has to be knocked out, just to have a pap smear. I hope you aren't suffering as much as she is.

I am also curious where you are from. My doctor only recommended radiation, and told me chemo would'nt work on my tumor which was located 1/2 way up the right side on my vagina. I had surgery, and the tumor and two lymph nodes were removed. My follw up pap smear in May, came back clean without chemo or radiation. I was told by the OB/GYN Onocologist that I had vulvar cancer, yet my cancer was in my vagina, so I check both postings on the ACS web site.

I wish you well.
Nancytahoe

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

This is nancytahoe, I too have been posting on this site, but not getting much feedback. I was wondering how you are doing now, Sept 1,2005.
I am going back in for another 3 month pap smear since my surgery in January, next week. I don't know if it's in my head or not, but I have had a moderate pain on the right side of my crotch for about a month now. I am thinking it is from the removal of 2 lymph nodes. I still have not had chemo or radiation, so I hope everything goes well next week.
Please feel free to email me at rnticknor@sbcglobal.net if you would like. It dosn't seem that women with vaginal cancer make many posting on this site. I don't know why, so that is why I gave you my email address. Not only am I curious about others with this cancer, but I want to share with my doctor what women go thru when they have radiation in this area.

Thank you,

Nancytahoe

Nancytahoe

MaggieAnn's picture
MaggieAnn
Posts: 6
Joined: Sep 2005

TO NANCY: I was diagnosed with vaginal cancer on April Fools day, 2003. Some joke, huh? My ca was caused by the effects of estrogen with my endometriosis, but the tumor formed on my vaginal cuff, so that is why they considered it to be vag ca. I went through surgery, 30 external rad treatments, and 3 internal HDR treatments. I would have gladly taken chemo also to save my life, but like you, was told that chemo isn't effective on vag ca and would only make me unneccessarily sicker. With the new radiation techniques, they are now able to pinpoint specific areas more easily. They made a plate for me, which goes into the machine and shields everything around the area being radiated. It wasn't bad, really. Some of the pain you may be feeling could be residual from the surgery. My gyne/onc felt he got all of my tumor, but my tumor broke and there wasn't a clean margin on one side. So he felt the rad treatments would get any remaining microscopic cells that may have survived.

TO CANCERNOMORE: If your MD didn't give you a dilator to use at home when you finished your rad treatments, you should ask for one. You will have to use it (or supplement with intercourse) on a regular basis for the rest of your life to minimize atrophy, but it's worth it. Imagine having a pap test if there's no room to do one? You said in your posting that you were going to the bathroom a lot at night and have frequent pain. First make certain that you don't have an infection, then see a urologist. Mine did a simple test and was able to see a bladder burn, then put me on a very low dose antibiotic once a day for prophylactic purposes. Wow, what a difference! Also, check into using Replens. It is hormone free and may offer some relief. If you can't find it in a store, check online. They may even send you a free sample. Your abd. pain could also be residual from your surgery and treatments, I am just now beginning to be able to somewhat lay on my stomach. Please know that although things will never be the same as they once were, they will get better. It takes time, but things will improve. I was 47 when dx, and I am so glad to be alive.

Nancy, I would have taken any treatments to save my life. I am interested in the chemo others that have written went through, and am now wondering if there really was something out there that might have been okay for me to take. But nonetheless, if they are recommending radiation treatments for you, I wouldn't rule them out. Good luck to both of you and take care!

AMom
Posts: 4
Joined: Aug 2006

I am a Mom of a V.C. survivor diagnosed and treated in 1999. She had the gold std treatment at time as determined by NCI and Sloan Kettering Research Institute. This entailed 5000 total units of radiation over 5 weeks (morning and afternoon) along with once weekly Cisplatin chemo each week. About 6 wks later she had an added 5000 units in an implant over 24 hours.

The results of all this you can see - it will be 8 yrs in Jan and she is still alive. But she (and we all) have paid a price for it that you all should anticipate and be very proactive about!

1) Lots of damage in the groin area - her ovaries were cooked so she went into early menopause.

2) Bladder damage which i will go into later.

3) Groin lymph nodes destroyed so she has periodic cellulitis (staph infections). Lymph fluid builds up and forms nodes in vagina and colon/rectum that are extremely painful.

The damage is cumulative over time. One of the new things discovered (just 3 yrs ago) is that you MUST have HYPERBARIC chamber treatments as soon as possible after radition treatments end. This will help with radiation damage.

Bladder damage is significant and hyperbaric treaments help. The damage is constricted urethra and ureters which lead to pooling urine that is not completely voided and recurring UTIs. If you have an HMO you MUST force them to refer you to urologist as soon as possible and get checked for this on a recurring basis. It builds over time.

My daughter has ended up with interstitial cystitis, needs stents to keep ureters open, had to have urethra reamed out, kidneys affected because of reflux of urine and may have to have bladder removed! All because HMO docs did not refer her to urologist - you know too many referrals hurt the doc's rating! Also she was so sick of seeing so many docs for all the problems of radiation, that she wasn't proactive enough. The result is that she hasn't worked for almost a year and she is in constant pain that needs oxycontin and percoset. As a Mom, it has taken a toll on me - I feel her pain in a way that nobody else can.

She was stage III when diagnosed because incompetent HMO doc botched the diagnosis until she was admitted to ER and insisted on biopsy. Tell everyone who has young daughters to get the HPV vaccine.

Ask me questions please - let me say that the treatments saved her life but her docs didn't know or wouldn't say what to look for as each year passed.

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