Vulvar cancer surgery (Vulvectomy) and doing very well.

Well ladies, I havent been on the boards lately, mostly because I am still fighting this beast of a disease! I see some familiar names here, which unfortunately means you too are still fighting it. My hope is for you all to stand with courage and strength. I am amzed at how many different types of vulvar cancer there are and how rare they are. I am so sorry for all you have had to endure.

I just found out that my last PET scan showed three more mets, another in pelvic area, one in shoulder and one in cervical spine at C2, so my options are fewer now and I have come to a place of peace , living with the beast. If they could just manage it , maybe keep mets in check, I would be happy. I'll be happy in any case because cancer will not dictate to me how I will feel. It is SO hard to believe I am so sick when I feel great, no pain, I am walking 3 miles a day, I drive, shop, whatever I want, but my body is very sick, so I will continue to live my life the way I want until it changes.

My hope is that women do not have to feel embarassed or uncomfortable about this disease, I wish there was more information and more support groups specifically for vulvar cancer. There are issues very unique to this cancer and its treatments that I believe women need an outlet for...maybe someday.

Now I wait for call from oncologist about next line of chemo for me, he was running a special test on bone marrow to find the right chemo. Spring will come soon, and sunshine and warm breezes, something to look forward to!

Best wishes to you all, take care.

funbeadgirl said:

Vulvar cancer-BOOOO HISS!

Well ladies, I havent been on the boards lately, mostly because I am still fighting this beast of a disease! I see some familiar names here, which unfortunately means you too are still fighting it. My hope is for you all to stand with courage and strength. I am amzed at how many different types of vulvar cancer there are and how rare they are. I am so sorry for all you have had to endure.

I just found out that my last PET scan showed three more mets, another in pelvic area, one in shoulder and one in cervical spine at C2, so my options are fewer now and I have come to a place of peace , living with the beast. If they could just manage it , maybe keep mets in check, I would be happy. I'll be happy in any case because cancer will not dictate to me how I will feel. It is SO hard to believe I am so sick when I feel great, no pain, I am walking 3 miles a day, I drive, shop, whatever I want, but my body is very sick, so I will continue to live my life the way I want until it changes.

My hope is that women do not have to feel embarassed or uncomfortable about this disease, I wish there was more information and more support groups specifically for vulvar cancer. There are issues very unique to this cancer and its treatments that I believe women need an outlet for...maybe someday.

Now I wait for call from oncologist about next line of chemo for me, he was running a special test on bone marrow to find the right chemo. Spring will come soon, and sunshine and warm breezes, something to look forward to!

Best wishes to you all, take care.

Dear Funbeargirl

You have always been an inspiration to me when I felt so alone with this cancer. Yes you are right...there is nothing to be ashamed of and we need more money to be placed in this area to further treatment. I think we will see a lot more women with this cancer in the future. My poor husband and I have been unable to resume a healthy sex life after the radiation fried me down there. We are coping and dealing with hyperbaric oxygen treatments and doing well considering. This cancer impacts a woman in so may ways, physically and emotionally. You have a great attitude and just keep at it one day at a time. I love that you walk 3 miles per day. Me too...this is my therapy and I pray during this time. Yes one the posts says there are clinical trials so don't give up. We love seeing you on there. 

Best wishes always and keep up the great work.

Kathleen in Phoenix

Stage 11, squamous cell carcinoma of the vulva

Dx. in Mar 2012, tx with chemo and radiation.All clear so far!!!

funbeadgirl said:

VC go away and don't come back any other day!

Thank you cc and Kathleen, I am always so humbled by the expressions of encouragement here, we all know what it means to us to be understood, I appreciate every word.

i looked up the testing that is being done, it is called Caris test, it looks promising, I hope my doc was able to get insurance company to approve it. He also mentioned clinical trials so I imagine we will have that conversation next time.

yes, I will continue on, it is what I have learned to do and it serves me well as I keep busy with my normal life activities it is a sort of distraction from all the pokes and prods from the medical end of things and keeps me hopeful. Focusing more on my grand kids and  helping others less fortunate also keeps me grounded and not feeling sorry for myself.

i never thought it wasn't fair that I was dealt this hand...what would not be fair is if this was happening to one of my grand children, better me than one of them. It's all about perspective.

we bolster each other up with a few words of courage, cry with each other when we need to and feel the comfort and solace of others who understand the path we travel. May each of you who visit these boards be inspired by those who have travelled that path before you, knowing you can make it too.

Dear Funbeadgirl

I am wondering how you are doing? I hope you are doing well and finished your treatment. Can you tell me, or can anyone, how do I feel better "down there"? It has been 2 years and my skin to the outside of my vagina remains red and sore. I had 50 hyperbaric treatments to heal a radiation necrosis ulcer, that healed. BUT I still hurt!! And sex hurts. I feel bad because at 49, I feel so good otherwise but my sex life with my poor husband...I feel robbed and sad. I feel too young for this.....anyways any good creams out there to apply to heal this? FUnbeadgirl, thinking of you.

Kathleen in Phoenix

Suffering through post treatment side effects.

Middy said:

I was diagnosed with squamous

I was diagnosed with squamous cell vulva carcinoma, my growth is 3 cm. I am still waiting for a surgery date. The surgeon stated he would excise approximate quarter size amount of tissue, with 3 to 4 sutures that will need to be removed a week after surgery. At the time of post op appt he will then review the pathology report regarding the margins surrounding the growth. I would really appreciate any feedback concerning the recovery afterwards.

Middy, I can't give you any advice, maybe some of the other ladies can.  I am sorry you have had to find us but welcome. 

Thank you Kathleen, I have meant to get here sooner. I saw oncologist and there is still no start date for the clinical trial he wants to get me into, still waiting for government approval. He is comfortable waiting a little bit since I have no symptoms and am feeling well. He said my best shot at controlling the metastes is the trial because it is targeted at the specific gene mutation that I have, a FGFR1 mutation, still a rare mutation. I'm okay with waiting a little bit for now but doc did say if it drags on to July, he will not wait longer,then he will get me started on another traditional chemo that addresses adenocarcinoma . Well see how it works out, I'm just busy with living my life for now and trying to recover from leg surgery effects from last year.

as a side note, the damage from radiation is different for everyone, I had radiation twice, first time to tumor bed in vulva and I recovered from that. Yes intimate issues are very difficult and doctors are not very good about knowing how to help a patient but if you have an understanding and patient partner, it can be dealt with. Sometimes intimacy takes on other forms and you have to become resolved to the changes. I think sex is a wonderful thing but it is not the end all in a marriage, you can have a meaningful relationship without sexual intercourse. With the surgeries I've had..13 different procedure in various places on my body, I've acquired an issue with body image, I guess when they keep hacking off and radiating your body it's hard to feel like a whole person so I have had to work on my own issues with this aspect. I am alive for the moment and enjoying the life I have and I'm satisfied with that. I just hope to get more days to do that, and I'm hoping this new trial will give me that.

so, now I just wait and take it one day at a time right now. My biggest complaint is the fatigue I have, it is always interfering with what I want to do, so I have to make adjustments there too. I'm learning but I won't give up!

thanks for checking in on me, I truly do sppreciate it very much!  Hope you are doing well and I hope you continue to heal...body and mind. Be strong!

NoTimeForCancer said:

You amaze me.  I read your

You amaze me.  I read your profile and I am moved to tears by your thoughts and words.  Thank you for sharing yourself with us.

katenraj said:

How are you

Dear Funbeadgirl

I am wondering how you are doing? I hope you are doing well and finished your treatment. Can you tell me, or can anyone, how do I feel better "down there"? It has been 2 years and my skin to the outside of my vagina remains red and sore. I had 50 hyperbaric treatments to heal a radiation necrosis ulcer, that healed. BUT I still hurt!! And sex hurts. I feel bad because at 49, I feel so good otherwise but my sex life with my poor husband...I feel robbed and sad. I feel too young for this.....anyways any good creams out there to apply to heal this? FUnbeadgirl, thinking of you.

Kathleen in Phoenix

Suffering through post treatment side effects.

 

Hi Kathleen,

sorry I did not answer your question about the creams for radiation. Hopefully your radiation oncologist gave you some creams. I was given several different creams at different stages of my radiation, first it was a moisturizing type cream, then I was given a cream with lidocaine in it for pain, then i was given a cream with antibiotic in it. That was when I had the 'wet burns'...not pleasant but manageable. One cream was called Skin Repair cream with Olivamine, manufacturer Medline, it was a moisturizer. I had a rare reaction to the chemo, I had what was called 'radiation recall', the chemo basically affected skin from previous radiation and the skin blistered and peeled like a bad sunburn. Funny thing was I never had that reaction when I first had radiation. Both times I had radiation, I used the creams twice as much as they recommended. I was fortunate that the skin in vulvar area healed very well.

did they tell you about scar tissue from radiation? I had to literally massage the areas radiated every day to break up the scar tissue, very painful but it was worth it, I have no pain in that area now. As far as sex...well personally i have had to come to terms that part of my life is over. For about one year after my first cancer surgery, we worked at it and as I said it was successful, but my mind was affected by the body image issues I had from the surgery, then I was diagnosed again with a metastes in my femur. Long story short...from august 2011 to june 2013 I had three major leg surgeries, plus more radiation and chemo and surgery to my pelvis. My hubby and I are very open about everything and came to understand that while we enjoyed that part of our life, it wasn't THE most important thing...we let it go and focused on getting me healthy and enjoying intimacy by just being together and having a wonderful family that supports us.

i have had only one clear PET scan since my diagnosis in 2008, I've had other metastes after every other scan. It is exhausting to face every scan result, then having to make decisions about more treatment, so now I just take one day at a time and pull out all the joy I can, in fact I've been blessed with two more grandchildren during this time...I have four reasons to continue to fight...Olivia, Jonas, Lucas and Ethan . We all have different needs and desires thus we all find our own reasons to continue in this fight. I hope for you that you heal well and continue to be strong and stand firm! P.s. We lived in Phoenix about 33 years ago, and I lived in Havasu for a short time before I was married, love the weather but missed my family too much!

Hi Everyone,

I'm 51 years old and a few weeks ago I started bleeding (post menopause).  My GP referred me to a gynocologist and he did a uterine biopsy.  While doing the biopsy the doctor saw discoloring on my vulva and told me he was not concerned about uterine cancer but was concerned about what he had found and that I needed another biopsy done.  I had the biopsy of my vulva done April 23 and was told results would be back no sooner than 7-10 business days so was shocked to receive a message from the dr. on April 29th saying biopsy results came back and are not good but are not the worst they could be and for me to call back.  I called back and spoke with the nurse who told me I'm being referred to an gyno oncologist and when I asked her if it was cancer she said yes, the beginning of cancer.  That's all I've been told at this point. 

I am having a terrible time finding information about this.  I looked up support groups and there are many in the UK, so thankfully today I found this one!

My oncologist appt is on Monday May 5th.  I'm very scared and am not sure what to expect.  Now I'm thinking that if they do surgery they could possibly find more problems (yes I have been googling a lot!).  

What happens at the first gyno oncologist appt? 

I feel like I am watching a movie of someone else's life, not mine.  Ever since I received the results I've felt so many different feelings and I have been doing the daily things that are expected of me but that's all, nothing more.  I just don't feel like it this week.....

I am also unemployed due to layoffs and am waiting here about a 6 month temporary position.  If I get the job I am not sure I can take it, it's a temp position and I can't just not be there if I need to have surgery.  Of course my health will come first, but need to survive somehow also.  I also raise my 8 year old grandson and it's just me and him.

Please help.  I have read some of the posts here and it sounds like things could possibly get even scarier.  

Thanks!

funbeadgirl said:

Lumps, worries and feeling blessed!

Thanks for the good thoughts! I'm still in a holding pattern, getting a little anxious about it but I'm trying to keep busy for now. I hope clinical trial comes through for me, if I have the traditional chemo and it doesn't work, I may not qualify to get in on the trial afterwards, I guess I will have to think about that.

This morning I noticed another lump in my vulva area, opposite side of original tumor...I'm thinking I'm over reacting in my head, but it is clearly a lump and it looks like a broken blood blister, now what do I do? I know I should call gyn oncologist, but I've been turned over to a new doc, my old doc moved away, and I just am so resistant to getting new doc up to speed on my situation. I think he will say let's biopsy that, and I don't know if I can wrap my head around that right now. Of course then the other part of me says,  'remember the last time you had a lump like this...and you waited a year to see doc'? I know the right answer.

my dear Lori, I'm sorry for what you are going through, perhaps there is a social worker at your hospital or doctors office that can direct you to special programs to help with your situation? Maybe you will qualify for disability? Sounds like you may not be in the U.S., so not sure how that works where you live. All I know for sure is that a patient must speak up, let nurses know and the docs what your concerns are. I have found the nurses to be a little more 'in the know' about these type of things though. Take it one day at a time and don't be afraid to ask for help. I wish you the best, hope things fall into place for you.

sometimes I get so mad, I feel so hopeless and feel so defeated but in the end I feel so blessed to have the support I have and to have such great doctors and nurses on my team, and yes I have a great quality of life that I enjoy. I try to remember in those times of sadness and despair that it is just a bad day I'm having and it will pass, I like the quote " having a bad day doesn't mean you have a bad life"-not sure who said that, but it is so true, I must keep it in proper perspective. I have a very serious situation but I'm not dying today, probably not tomorrow, and it's not on schedule for the day after that either, so I will not borrow anxiety and worry from the future...it is the present that is my gift( sorry for the pun) and that is where my joy is!

may you all have happy and blessed days also and be strong and stand firm against your struggles...with a smile.

 

Here I am again...still no news! I saw oncologist, he still has no start date for the clinical trial and he admitted that he did not know how to read the genetic report very well, so now he says I do not have the mutation they thought I had, but that I have a cell that is defective and replicating it self like crazy...yeah...that's what cancer is right? Anyway since I'm not in pain from the tumors hes not particularly worried about that, but is worried about my kidney function, my numbers are all either too high or too low. So now I have to have a CAT scan next week for him to check out the progression of tumors and look at the kidneys. All I can say is that it is getting harder and harder to put on a happy face and fight this disease in a positive way.

I continue to have pain in right leg where Ive had three surgeries from the metastes in femur, I'm on oxycontin and vicodin and it hardly makes a difference. I'm tired of complaining to my doctors, I'm tired of having to tell my family and friends that I have no news on my next treatment plan and I'm tired of always thinking that every little ache and pain is related to more metastes...I'm just tired.

Every day gives me a new opportunity to face the day positively and with hope, so I guess I will take it day by day, no sense to borrow trouble that might not come my way. Focus...that's what I need to do, focus on the positive and constant things I do have in my life, and there are many, I'm blessed and grateful for every day I wake up...but would I be human if nothing ever bothered me? I think not.

I think I just needed a little time to spout off tonight, thank you, I know it's safe here. I really am okay, generally speaking. I just want to 'move past' this but I can't seem to do that, it's like someone is moving the finish line farther away as I approach it each time. I really need a different mind set, I'll never move past it, it's here in my life forever.

p.s. at least my last little lump was nothing, it went away....I wish the rest of the cancer would go away too!

ccfighter said:

Human, yes, and a wonderful

Human, yes, and a wonderful one at that.  This is a long hard battle you've been fighting, with such grace and bravery.  It is so hard not to have a plan of attack when you are on the front line every day, looking for a commander to give orders, dodging bullets, nursing injuries, wondering if this war will ever end.  You are an amazing woman.   I hope that soon you will have a treatment plan And that it knocks this disease out.

 

also, the link you provided about the cervical cancer treatment at NIH, with T cells, well, they have done the same type of treatment with some other cancers and perhaps have some clinical trials available for other solid tumor types.  Maybe you could look into that.

 

peace and comfort my friend.

Thank you for your wonderful words of confidence in me, I'm always so encouraged by your always reaching out to lift me up., that is what I love about this site, we all can rant and rave and expound however we feel and there's always someone there to understand. I know I will get through this, one way or the other, I'm just trying now to put everything in it's proper place and not give over too much control to the disease, it is still my life after all! I really need to start journaling again, it always helped me to get it out of my head and organize my thoughts.

today I saw my primary doc for a regular check up and she was very concerned about my kidney function but also that my calcium was twice as high as should be, so I had to call endocrinologist to sort that out. Now my calcium meds are cut in half and I pray that the calcium doesn't get too low and the seizures start again, honestly there is never a dull moment in my life. More blood tests now too.

im changing gears here, rather than talk about the trials and things that bring me down, I'm going to talk about the things in my life that bring me joy, the things that are really the most important things. I have 4 beautiful grand kids, Olivia-15,Jonas-13, Lucas-3 and Ethan-7 months, they are the four reasons that I endured chemo every three weeks for 5 months, the reason I save my strength to play with them and the smile on my face when I just think of them and how close we are. We live in same small town with my son and his wife and the kids, we have dinner together every Monday night and have been doing it for15 years! My daughter in law called me one day and asked us to move closer to them..oh yeah, she likes me that much, of course we moved...and we only lived 10 miles away at the time.Her parents live in town here too as well as her sister, we all love each other and get long very well...that is a true blessing.

i have a wonderful supportive husband that sat with me every minute of a 6 1/2 hour chemo infusion, six times plus accompanied me to countless doctor appoitments, scans, tests, biopsies, so many things. He's a hard worker and has had to take on extra hours when I couldn't work anymore, he does ALL the cooking and will do anything I ask him, he even anticipates my needs before I do. He supports every choice I make and makes it easy for me to make those choices, he also has been so understanding in the aspects of how this disease has affected me, emotionally, mentally and physically. I honestly believe that this has been harder on him than it has on me,I really do.

im grateful for my mom, she is my biggest cheerleader,I can only imagine how hard it must be for her to watch me, her firstborn,have to face this ordeal and live with the thought it might possibly take myl life, no parent should ever have to endure that. My sister has been a constant support,always ready to take me to the store, run errands, go to lunch, just listen to me vent, we have gotten much closer,a positive thing to have come out of this.

countless other friends that took me to every single day of radiation treatments, two separate times for a total of 58 treatments, and the drive was 60 miles round trip. I've had cards sent to me, fruit baskets, lots of chocolate, meals, visits, my favorite coffee drink from Starbucks, an afghan made for me, numerous caps for chemo, a paid trip to Disney that my friends organized, a surprise party when I finished chemo, and then while on that vacation for 6 days...they came in my house and remodeled my 30 year old kitchen!

how can you ever say a thank you that covers all that? I guess it's in living the life I have that honors the love they showed me, to embrace every moment of every day, to see the good in everything, even the bad days. I don't ever feel sorry for myself, I realize that I have a blessed life and I have much more than another person might have so I must use what I have, what I have learned to pay it forward so to speak,mi hope in some small way I have been able to do that, and I will continue to look for opportunities to do so.

at the very foundation of all of this, at the very core of my being is the recognition that I am not any more special or more blessed than another person, I just try to accept what I have is a gift. I have a strong faith in god that gives me a sure hope of better times ahead, it's not in my hands but in gods hands and I've learned to be patient and wait , while trying to use my life to bring glory to god. I don't blame him or think he's trying to teach me a lesson, this disease happens across the board to babies and children, to good people and less than good people, but I will allow myself to learn about myself and others in the face of it. With that said, I think I have seen the very best of humanity in this situation, I'm humbled to have been the recipient of that kindness.

i have no special words of wisdom, just true feelings and the expression of such. Blessings to you all.