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Life after vulva cancer treatment

llwelya
Posts: 1
Joined: Apr 2013

I was diagnosed with stage 3 vulvar carcinoma.  The diagnosis completely came out of left field for me.  I have never been diagnosed with HPV in my entire life.  I have always gotten regular checkups especiallly when I was pregnant with all three of my children I was sure to get through tests for all possible diseases.  When I look back on it now I would say my discomfort began after the birth of my first son.  Itching, discomfort but I did not pursue the issue too much besides my routine exams.  Slowly over the next 7 years it began to get worse, at times around my period I noticed a painful area which felt like sensitve scar tissue.  Embarrassed for now real reason I didn't really talk to anyone about my problems.  Soon it began to cause intimacy issues between me and my husband, but I was still too embarassed (and probably scared) to find out what was going on.  Eventually it became so painful that I cried everytime I urinated, even walking was beginning to become a challenge.  One night I had reached my breaking point with pain and decided I needed to go to the emergency room.  That was not the right direction.  They took tissues samples and before the results came back (2-3 days) they told they though I had herpes.  At this point in my life I had been with my husband for 13 years and had absolutely no reason to questions his fidelity.  After talking to the doctor for a little bit she seemed to begin to doubt her diagnosis and wanted to run some more tests before they discharged me.  I was mortified and in extreme pain, I refused futher treatment took my herpes perscription and left.  I never filled the perscription because of the shame and embarrassement I felt I didn't look for another doctor until my test results from the ER returned.  They all returned clean, they tested me for every possible STD and every one of them came back negative.  So I was right back where I started.  Tired of being in pain I finally opened up to friends.  That is when a friend referred me to his wife's gynecologist.  The man was fantastic and honest.  He told me he didn't know what was wrong me.  That he couldn't believe I was walking around with this lesion because it was so painful he didn't want to touch me to begin with he felt bad.  So we through some strong antibiotics and antivirals at it none of it worked.  So it was time for a biopsy, my doctor was just as shocked to discover it was cancer as I was.  I met a wonderful oncologist, due to the pain my surgery was scheduled within two weeks.  This turned out to be a good thing because when they tested my lymph nodes those too were cancerous.  So many decisions to be made at that point.  Radiation would be required it I opted for another surgery to remove more tissue from the left wall of my vulva and remove right lymph nodes for testing.  Or radiation on my entire hip and vaginal area.  I opted for the second surgery first, my right lymph nodes were clean and since removed more tissue from my vulva I would only need radiation on my left hip area.  After 6 weeks of radiation therapy my next CT scan found me clear of cancer, April 2011.  Since then treatment has started early menopause (I'm 35) and has caused all kinds of leg and hip problems.  For being an independent, athletic individual this has been hard to accept.  My left leg is the worst it gets extremely stiff and soar.  My hips, lymph node area, and ovaries have random spasms of pain.  Radiation completely killed my left ovary, it's now just a painful ball of scar tissue that hurts even from the outside.  I'm lucky enough that it has not turned into lymphedema but I still struggle everday.  It's hard for me to find information about long term side effects and how to deal with.  I thought I would get better, I thought my life would get normal again but after two years I'm trying to accept this will probably not happen and I need to find a new normal. 

funbeadgirl
Posts: 153
Joined: Jan 2009

I am so sorry for all that you have been through, but I am glad you have gotten through it. You will find a new normal, as we all do, and it can be better than before in the sense that cancer , while it takes so much away from us, also gives us a lot in return...if we allow it. You have learned that it is important to be aware of what is happening with your body, and to keep looking for someone to listen to you. You story also has another very important component to it...education, for every female, from a young girl to a grown woman needs to be educated about her body, what the correct name of body area is called and to report any irregularity to her physician. Most women are not aware that they should be doing a monthly self exam of the vulva area just as they do with breast tissue. We must remove the stigma that is felt by so many women with regard to vulvar cancer and the many other vulvar diseases that can affect them, never be ashamed to tell what type of cancer you have and never be afraid to educate another person about it.

May I suggest that you call your local cancer clinic and inquire about any programs they may have for cancer patients. They usually will have some sort of cancer support group that meets once a month, or other counseling available, and usually at no charge. Ask your oncologists nurse if she knows of anything also, I have found the nurses to be a wealth of information and have received much help from my oncology nurse. You do not have to be in treatment, you can be done with treatment, and in my own case, I have found that I need more help now after treatment than I did while I was in treatment. We all experience cancer in a different way but one commonality we all have with cancer is that it disrupts our lives and yet we must find a way to go on. I hope that you can find a way to do that and I wish you the best.

I have stage 4 metastatic vulvar adenocarcinoma, a very rare VC,I have had a vulvectomy, full pelvic radiation with lymph node positive, thyroid cancer also, then first met was in femur bone, had surgery, more radiation, chemo, another leg surgery because femur fractured then another tumor in pubic bone, cryoablation to that and now I need another leg surgery because fracture has not healed in over a year, so they want to do a hip replacement. But the bright side in all of this, is that my last PET scan was clear, no evidence of disease. So I know the ups and downs of cancer, don't let it deifne your life, accept that it is part of your life and then find a way to move past it. I realize you won't be able to forget about it completely, with stage 4, I know it will come back, I am just using the 'no evidence of disease' free time to my own advantage. I have 4 reasons that I go on, my grandkids, so maybe you can find your own reasons too.

You CAN do it, be strong and know that you are not alone, this board is full of women that have fought this battle bravely and with dignity, we encourage and help each other. Happy thoughts=happy days.

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Hello there

I feel your pain and it is good to know there are others out there that feel alone like I do. I am one year out post treament from Stage 2 left vulvar cancer. It too was a shock and rocked our family. My boys are 12 and 14. It was very scary for us.

I was doing great but these days having a lot of pain. The radiation onc. tells me I have have soft tissue necrosis and hyperbaric oxygen therapy for 40 treatments will do wonders. I am so happy they can help me. I feel this bump will be the finaly one on my raod to recover. I will keep you posted. Take one day at a time and each day is a gift. Just follow what the doctors recommend and all will be ok.

Kathleen

kat2013's picture
kat2013
Posts: 7
Joined: Sep 2013

I know this is several months old, but I pray to God you are still here. Your story is EXACTY like mine. It is SO hard to find anything about this, or anyone who has it. I have been through the same thing...told I had herpes (NOT!)....told over and over I had a UTI etc. I was diagnosed with cancer of the urethra and vulva.The urethral cancer is practically unheard of. If you are still here please contact me....I think we could help each other, NO ONE understand this. My doctors even struggle because there is not much data on it as only less than 1% of all cancer diagnosed is this type. When I was in the hospital (a teaching hospital) they had so many student doctors coming into my room to question me etc, because its so rare. I don't think I will ever be normal again either. I have not had surgery...they treated me with chemo and radiation (I have the sore leg thing too)...and now I wait...to see if it helped.

Toast
Posts: 33
Joined: May 2010

I experienced the novelty of being a rare cancer too.  I felt like  a specimin on a slide with a room full of student doctors while I was in a very embarrasing position getting an exam.  I try not to, but I get cranky sometimes that people don't understand this cancer  -- and because of it's position on our bodies, they think it is shameful or funny.  If we were breast cancer survivors we would have an entire month of people singing our praises and showing support! 

Ok, I'm done.  Sorry.

I'm glad we have each other.  I'm glad we're alive.

Take care all :)

funbeadgirl
Posts: 153
Joined: Jan 2009

I am sorry for what you have gone through, I experienced it all myself. I am still dealing with it, I have have my vulvar cancer metastesize 3 times to the bone in last 2 years. My battle now is with insurance company to pay for my last procedure, a cryoablation and I have to have it again in a week. They say it is experimental, but when you have a rare cancer everything is experimental, right? I am getting very tired from it all and feel like giving up sometimes but I have too much to look forward to in my life. My particular cell type of VC has 35 cases a year...no data on that either. Oh well, I just try to plug along day by day.

I pray for all women affected by this dreaded diagnosis...and please ladies don't feel embarrassed, it is everyone else that doesn't know about VC that should be embarrassed.

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