Reoccurring vulvar cancer stage IV

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Reoccurring vulvar cancer stage IV

by Katherineanne on Tue Apr 14, 2015 08:45 PM

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Hi my name is Katherine, and I just want to share, and see if I can get some good feedback. I was told at my last Oncoligist visit, that our goal is to stabilize the cancer, not get rid of it. My options are limited due to this being a reoccurrence (so I'm radiationed out) and my tumors are deep and to close to my femerol artery to remove. I started out with two tumors, now I'm up to four. This is how they explain it...I have stage IV vulvar cancer with four metastasis tumors (with SUV of of 3.2 & 4.8) to my right iliac lymph nodes, also upper left lobe with an SUV of 1.6, and a 1cm SUV of 2.6 Pretracheal node. Please anyone with suggestions or thoughts about this. I'm starting chemo on Tuesday again. Taxole, Carboplatin, and Avastin. I'm allergic to the carbo, so I have my dosage cut in half, and given to me very slowly. I want to win this fight, but I don't know how.

RE: Reoccurring vulvar cancer stage IV

by rmarci on Thu May 21, 2015 03:34 PM

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Hi Katherine,

I'm sorry to hear about your dianosis.  I'm curious, how did you find out about your reoccurance?  Did you have pain or other symptoms or were the tumors found during a follow up with your Dr?  How long has it been since your original dianosis?  I had stage 3 vulvar cancer 2 years ago and have pain in my right groin which they say is due to scar tissue, but I worry it could be more.  Any thoughts would be appreciated!

RE: Reoccurring vulvar cancer stage IV

by Katherineanne on Thu May 21, 2015 09:19 PM

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I was originally diagnosed in 2006. I had a lot of lymph nodes removed from both groins. I started getting very bad edema in my right leg. I went to four different doctors six different times, and two of those times it was my Oncoligist. He completely dismissed it, so I fired him. Thank God my daughter worked at a diagnostic center, and she made me get a Doppler on my leg. She found a blood clot, and my new Oncoligist sent me in for a PET scan. They found two new tumors. Did you have radiation? That could be it. Do you have any edema? I feel the cancer once in a while. The doctors say it's the chemo fighting it. I worry, because I can't get chemo as often as I'm suppose to because my platelets are 51 right now, and I wonder if the pain I'm feeling is because it's getting bigger. I'm obviously stage 4. What have you had done on you since your first diagnosis? I've had it all and the kitchen sink.

RE: Reoccurring vulvar cancer stage IV

by Benedetta on Fri Jun 26, 2015 04:19 PM

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Hi ,I  had a radical vulvar surgery on the second of march .Doc told me I would not have to have any thing more done,Now she is having me go to have radiation 30 treatments I'm very scared ,Don't think Ican handle it .

RE: Reoccurring vulvar cancer stage IV

by Katherineanne on Fri Jun 26, 2015 05:03 PM

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YOU CAN HANDLE IT. I too a a radical vulvectomy, radiation, chemo, and five surgeries. That was eight years ago. I was diagnosed a second time July 23 of last year. I was more afraid of the chemo then the radiation. The radiation doesn't hurt, it's just extremely boring. The worse thing that happened to me were second degree burns, and they give you medicine for that. They make a kind of hard mesh material to help aim, and stay still, not invasive at all. You also get tattoos, so they really know where to aim. The rest is just laying there. Not invasive at all. I didn't feel any different, just the burns. I'd much rather have little burns then cancer. Did any of it spread? Mine spread to my lymph nodes and I'm having chemo again. Chemo isn't bad either, just makes me a little tired. You should ask for that too. I was eight years cancer free. That's because I had everything and the kitchen sink thrown at me. Please let me know how you are.

RE: Reoccurring vulvar cancer stage IV

by Benedetta on Sat Jun 27, 2015 01:36 AM

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Thanks for replying to me. lymph nodes were ck.no cancer .Your cancer came back ? and was still in the vulvar .My fear is it will take off .I was told it goes to the colon then the lungs .do you feel alright ?I'm very tired ans not a thing was done yet.went to sloan kettering in New York now my Dr. upstate( gynecologist).  Is looking for a dr. to give me  radiation  .would have loved to stay with sloan but to stay away from home for 6weeks Just can't do it N.Y. is way to much money.hope all works out .I'll keep you in my prayers!

RE: Reoccurring vulvar cancer stage IV

by Katherineanne on Sat Jun 27, 2015 03:17 AM

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Mine went to my lymph nodes. Can't have surgery because one of my tumors is to close to my femerol artery. I have four tumors. Two by my artery, one in my lung, and one in my Pretracheal. Very small, except the one near my artery. You need the radiation. They have houses you can stay at for free. Try to speak to a counselor at your hospital, and tell them your concerns. There's all kind of free help out there, you just need to ask. If you don't mind me asking, how old are you? I'm 47. First diagnosed at 36. Stay positive.

RE: Reoccurring vulvar cancer stage IV

by Benedetta on Sat Jun 27, 2015 02:40 PM

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I'm 66 ,and yes I will have the radiation ,but it will be upstate ,New York, not in New York ,N.Y.    I did ask about Houseing in the city (near sloan ) none just hotals .when I went down to New York to have the surgery my family stayed in one of the hotals 5days it was almost a $1000.00 then food way to much for my income.

RE: Reoccurring vulvar cancer stage IV

by Katherineanne on Sat Jun 27, 2015 04:34 PM

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Maybe get a second opinion. Is there anything closer to your home? I live just outside of Orlando, and there is at least three cancer hospitals near me. Call this lady. It's the Cancer Instatute, they're main hospital is in Georgia, but when I talked to Mona she found a small oncology group that's part of the Cancer Instatute. Call her to see if she can find something for you closer to your home. Here is the number. Cancer Treatment Centers of America Mona.Shah Oncology Information Specialist Cancer Treatment Centers of America® 1336 Basswood Rd., Schaumburg, IL 60173 P: 847-342-6861 E: Mona.Shah @ctca-hope.com W: cancercenter.com

RE: Reoccurring vulvar cancer stage IV

by Benedetta on Sun Jun 28, 2015 12:51 AM

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Thanks for the info ,Just sure my gyn upstate will find me some one very near me .I will call (Mona) her If it doesn't work out for me here . my mother & brother live in Ineverness Fla. not to fond of all that heat ,quess I've been upstate to long .born and raised in Brooklyn N,Y.

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