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What about Radiation Therapy?

curiouswcancer
Posts: 1
Joined: Jun 2010

The results of a biopsy taken 3/6/10 showed Metastatic Cancer of Unknown Primary. After being cleared OF 13 other cancers, it was determined I needed a Left Sentinel Node Dissection & Left Radical hemivulvectomy on 5/13/10. The results of those biopsies showed there was cancer in the sentinel node and several microscopic cancer cells near the margins. Now I am supposed to go for 6-7 weeks of daily radiation therapy, and that SCARES me more than the surgery did. Any advice or words of wisdom as to what to expect?

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

curious,
Hopefully several of the women who've had radiation directed in your area will pop back on here and share with you. My radiation was directed at the cervix and abdominal lymph nodes (where the cancer had mets). The treatment themselves were painless, but accumlative. By week two, the side effects started showing up. Mine would be completely different than what you could possibly expect.
I wish you luck on your journey.
((HUGS))

funbeadgirl
Posts: 152
Joined: Jan 2009

Hello Curious...I had a partial radical vulvectomy Jan 2009, I had vulvar adenocarcinoma, with 1 lymph node positive. I also had the Sentinel Node Biopsy and very thankful for that. I am glad you were able to have that also, you will have less problems with lymphatic swelling, in fact I have never had any problems with that...because I only lost 5 nodes total.
I had 5 1/2 weeks radiation therapy...IMRT it was called, and I handled it pretty well. One thing I did was to use the lotions, gels, creams they gave me faithfully, and I came to treatments with a very FULL bladder each day...I was told that would help to avoid problems with bladder, I never had problems with bladder. I did feel a little tired by the second week, but I just rested at home, I lost my job so I did not have to think about having energy for a job. I actually did well with the whole experience... was uncomfortable and had burns by the 4th week, but it was not unbearable. A few things I did to help with skin irritation was to wear soft cotton knit yoga pants, about 3 sizes too big for me. Of course I had my treatments in winter, so you may want to wear skirts now. I also gave up underwear for a while, I rather enjoyed that, as I also was thrown into instant menopause (hot flashes) because the radiation fried my ovaries.When you shower, do not use very hot water, and use a fragrance free mild soap...I used Dove body wash, as it was recommended to me. I am sure rad/onco doc will have lots of info for you.Where did you have your surgery? What symptoms did you have with your cancer? Vulvar cancer is so very rare, and it is hard to find someone to talk to about it that understands. Hang in there, if you have any more questions let me know.

holtdawn
Posts: 1
Joined: Jul 2010

Hi funbeadgirl,
Thank you for posting your experience of radiation therapy. I had a radical vulvectomy with Lymph Node dissection on June 29 in which one out of the twenty four lymph nodes was positive. I will need 25 to 30 treatments of radiation beginning in a few weeks and could really use a friend for support and guidance. Since you have gone through this I was hoping we could kinda be friends and share our experiences. My cancer was a stage III Squamous Cell Carcinoma with micro invasion and as I said, Lymph Node involvement. Did you have the drainage tubes in your groin area? I had one on each side.
they took one out yesterday and hopefully the other will come out in a few days. Do you have a good support system at home? I have two close friends and my family (Mom & Sisters) to help me get throughthis difficult time but my husband is not very emotionally supportive of me. Sometimes i feel like I'm on an emotional roller coaster. Hope to hear from you soon

funbeadgirl
Posts: 152
Joined: Jan 2009

Hi there holtdawn.
I am always glad to share my experience, this is a 'lonely' cancer, seems no one wants to talk about it. I got over the embarrassment right away since I believe women need to know more about their bodies.
I would be glad to be a part of your support system through your radiation, I will answer any question you have regarding the treatments and the side effects. I did not have drainage tubes, probably because they only took 5 nodes, 2 of which were tested in operating room. only first nodes was positive with cancer, the other wasn't, but surgeon took 3 more for further pathology just to be sure. I am so grateful for that, although right now I am having a minor swelling of one ankle, so I am having a CAT scan tomorrow to rule out that cancer may have come back. Doc does not think it has, he just has to test the more serious stuff first, I think it is a little lymph edema, which will be addressed also.
I did have a great support system, husband and many friends and family, but I became my own best support by keeping a positive attitude. Your husband probably does not know what to say to you, men are fixers and he can't 'fix' this for you and probably feels bad for you. He probably needs someone to talk to also.
Please keep in touch and if you would prefer we could do private e mail, what ever you want.Hang in there, it is an emotional roller coaster, be patient with yourself and really take it one day at a time...or one hour if you need to. I wish you the best!
funbeadgirl

Bumperless
Posts: 13
Joined: Jul 2010

I was first diagnosed in 2006 and had a radical vulvectomy with bilateral lymph gland removal from the groins. 15 glands from each side and 5 were cancerous on the left groin. Also a pelvic gland was enlarged. I had chemo and radiation to the abdomen and left groin. In 2008 I had a pre cancer found in the vulva. I had a wide excision to remove it. In April 2010 I had cancer again in the vulva. This time I had a clitorisectomy and debridement of an area that had never healed from the wide excision. One month later the incision abscessed and I had an emergency I&D surgery. My daughter had to pack it for over a week till it healed. In June , I had a 3 rd surgery for a cancerous lymph nodes in the right groin. Now I am getting radiation to the right groin and to the vulva

My question is has any one had radiation to the vulva? After 2 weeks my behind skin is pealing off and I am scarred that it might nor heal. I have been using the cream that they gave me and sit baths.

funbeadgirl
Posts: 152
Joined: Jan 2009

First of all...I hope you are doing well. I had vulvar adenocarcinoma and a partial radical vulvectomy and radiation therapy Jan 09. I had burns after 4 weeks on the vulva/groin area and I did use the creams they gave me,faithfully. It did help and I healed very well, today I would never know anything ever happened to me except that I have 1/2 a vulva and sitting is a little different now.Be sure to use warm water when showering (not hot) and use a soap/body wash without fragrance, which can be irritating to the skin.
During your most uncomfortable time, I would suggest to forgo the wearing of underwear so as not to irritate skin anymore. I had my radiation during winter/spring, so I wore yoga pants (sans underwear) a few sizes bigger than I normally wear. Also stay hydrated and get lots of rest, this will help the healing process.
I think your surgery was a little more extensive than mine, my clitoris was not affected and I had only 5 lymph nodes removed, one of which was positive for cancer. Take it one day at a time and stay positive, you will be able to get through this.
Take care of yourself, I hope I was able to help you with your question. Hang in there!

Bumperless
Posts: 13
Joined: Jul 2010

Dear Funbeadgirl,

Thanks for the tips for radiation. It's comforting to know that I am not the only one getting a burn where the sun doesn't shine.

Bumperless
Posts: 13
Joined: Jul 2010

Dear Funbeadgirl,

Thanks for the tips for radiation. It's comforting to know that I am not the only one getting a burn where the sun doesn't shine.

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