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Vulvar Cancer - Lost

dmn
Posts: 6
Joined: Jan 2013

I am new to this site and I am so happy to find other women who understand what I am going through.  In May 2011, at the age of 35, I had what I thought was a blister that turned out to be vulvar cancer.  I had never even heard of that type of cancer and wish now I never had.  A week after being diagnosed I had my first of 11 surgeries.  It started with a vulvectomy on the left side, a week in the hospital and a scar down my leg.  When I went in for my four week check up the cancer was now on the right side so the next day had a vulvectomy on the right side.  I really hoped then that would be the last of everything but boy was I wrong.  A few days after I got home all the stitches busted and had a giant hole in my leg.  They put a wound vac on to help my heal quicker and I must say that was a nightmare.  Once the wound vac came off the doctor found some new spots that had appeared in the four weeks I was down on the wound vac.  That was the first of 9 laser surgeries.  Everytime I go for a follow-up there are new spots and go in for an outpatient laser.  I actaully have been okay with this process because I feel like my doctor is catching it early and anything is better than those vulvectomys. But last Friday I had a laser and my doctor called me this week and said that the biopsy from the laser showed the spots were no longer pre-cancerous.  I was so confused and sad....I actually to leave work. She said I have to have a hysterectomy immediately and start radiation soon after surgery.  I feel so beat down. I thought after the year I had in 2011 things would get easier but now I am afraid I am facing more of the same.  I try to stay positive and have a good outlook but its hard.  I have been doing research on the radiation but I truley have no idea what I am walking into. 

 

Anyone who has been through this and can offer advice or positive words I am in desperate need of it. 

 

 

marieleonard25
Posts: 2
Joined: Nov 2011

I understand your frustration.  In January 2011 I was diagnosed with Stage I Vaginal cancer.  I was treated with chemotherapy,  25 external radiation treatments, followed up with 4 internal treatments.  My follow-up pap smears remain cancer free.  However, at my 3 month exam a "cyst" was noted on my vulva.  My gynocologist/oncologist performed a partial vulvectomy and removed the lesion in November.  December 21st he calls my cell phone and states he is uncomfortable with the biopsy results which indicated precancerous cells and possible micro-invasion.  In January of 2012 I had a full left sided vulvectomy - which did not seem as invasive as your surgery was, but it was hellish.  I continued to go to follow-up appointments which were all fine, though I repeatedly pointed out the skin-tag erupting out of the top of the incision line.  I was assured this was just a stitch or healing tissue.  In September of 2012 I returned to my oncologist and asked again about the skin tag which was now bleeding and very sensitive - he finally freaks out and again schedules surgery.  It was no surprise that the tissue removed was precancerous.  At my last visit he again states "Its all good news, I think we got it this time," though he was concerned about my auto-immune status.  I then had a battery of tests which all fell within normal limits.  Very perplexing indeed. 

I just wanted to give you my background, so you know you are not alone with this persistant disease.  As for radiation therapy.  It is miserable.  It is most important to focus on nutrition and especially hydration.  I did lose my appitite and was very fatiqued especially at the three week point.  I also started to experience pain at that point which I finally treated with the narcotic pain medications I had thus far avoided.  I was able to take baths, so each night I would slip into the tub with epson salts which were soothing.  There is also topical cream - I was given Silvadine which offered relief and they can give you a treament in the office which can help.  I continued to work, but cut back to part-time and never went out in the general public as your immune system is compromised. 

My worst side effect developed exactly one year after treatment concluded.  I started having violent bloody rectal discharge.  This was directly related to the pelvic radiation and can last your lifetime.  Understandably I was distraught at onset but I now have dietary guidelines and medications when I have a flair. 

Would I do it again - yes.  I think the treatment, though toxic is my best chance at beating this.  It's not going to be easy and one of my biggest complaints is the failure to fully tell disclose the possible side-effects of the treatment.

Prayer, meditation and yoga got me through it.  Please know you are not alone. 

dmn
Posts: 6
Joined: Jan 2013

Marieleonard25,

 

Thank you so much for responding! It is so good to hear from someone who understands what I am going through.  My doctor called today and scheduled the hysterectomy for January 30th so I assume the radiation will start early March.  I have been reading up on radiation and it sure doesnt sound fun but I feel much more optimistic than I did last week.  I see my oncologist on Thursday and I have a whole list of questions. 

It may sound like a stupid question but during your radiation what did you wear to be comfortable at work? My boss told me yesterday they would lighten up on my dress code while I am in radiation so I can be as comfortable as possible but I do work in an office and sit majority of the day.  Was it uncomfortable to sit for you for long periods of time? I hope you dont mind the questions....:-)

I hope your doctor is right and they got it all this time! No woman should have to endure what you have had to over and over again.  Knowing that are other women you actually know what a vulva is more comforting than you can even imagine.  I would love to check back here and hear more about your journey and get advice as I start this part of mine.  Knowing you have done the radiation maybe you can give me advice as I start to make a more manageable?

 

 

funbeadgirl
Posts: 163
Joined: Jan 2009

dmn- I saw your post last week, and I am sorry to have waited so long to try to give you a boost, given all that you have been through. Vulvar cancer is not only a 'lost' cancer, it is a long and winding road, with ups and downs, I know I have been dealing with it for 4 years now. The best advice I can give to you from my perspective is to keep a notebook with you at every doctor appointment, phone call, etc., and write it all down. It will give you a chance to review it later and call doctor back if you have any more questions or concerns. Ask them to explain everything to you and in terms you can understand, I think having a companion at each doc visit is helpful too. I did not know vulvar cancer can go to the uterus, why are they doing a hysterectomy on you? Did they do any pathology to define that is is present in your cervix or uterus?

I made myself crazy trying to find another woman with my type of vulvar cancer and have never found one, I even went to boards in the United Kingdom and Canada. Your VC is different than mine, but I can totally understand how you feel. No one knows what the vulva is when you tell them what kind of cancer you have, then you have to explain, then you worry that you will be judged. I had one ignorant person asked me if it was an STD..really? Cancer is an STD, it enrages me!

I am hoping your young age will work in your favor, you will be able to move past this, but it will take time. I had 33 full pelvic radiation treatments, it was not fun, but manageable. Each person is different in how they react to the treatments, so no use in comparing yourself to anyone else. The best thing I did before RT was drink a full 16 oz. bottle of water just before I got there, it plumps up the bladder and when you lay down, the bladder moves out of the way, a nurse told me that. I love nurses, they have been my biggest ally in all I have gone through. Use the creams on your skin more than they tell you, drink lots of water to stay hydrated, eat good food and rest.

I believe that if doctors told a patient about every side effect that could possibly happen , no one would ever have a potentially life saving surgery or treatment. Not all patients will get every side effect, so that is why they don't tell you, and honestly you can only absorb so much of what they tell you. When I went through chemo last year, I was so anxious and freaked out the first couple treatments, I asked the nurse why don't they tell you what to expect and she said they could tell you but until you experience it as the patient , you really can't understand it. My chemo nurse spent 2 hours going over everything with me a couple weeks before but I truly could not absorb it all.

I have had 2 metasteses of vulvar cancer since 2011, both of them in a bone, different areas of body and I had my last procedure last Tuesday and I hope that they got all the cancer this time and that there isn't a small piece floating around still in another bone. I have accepted that cancer is a part of my life now, I no longer hope for a cure, but rather just try to manage it and hope for longer periods of time between metastes. I have a pretty good quality of life now, for my age, I will be 60 soon and am able to do what I want, albeit a little slower than before.

Be determined every day to move forward, and if and when you get knocked two steps back, get up and move forward again. It's what I try to do every day, sometimes easy, sometimes hard, but I never stop trying. You can do the same, this disease will not be your identity, don't let it, be who you are. I always said that cancer was just something that 'happened' to me, it is not who I am. I hope you feel better today and that I could have given you a little ray of hope.

Happy thoughts = happy days!

 

dmn
Posts: 6
Joined: Jan 2013

hello funbeadgirl,

However long it took you to respond I am just happy you took the time to do it! :-)  I am having the hysterectomy because 2 years ago my mother was diagnosed with stage 4 breast cancer and a month later my aunt, my moms sister, was diagnosed as well.  They were both tested for the BRCA gene and both tested positive.  My mom has 4 girls, me and my 3 sisters, so we all had to be tested.  I tested positive for the BRCA 2 gene so I have a higher chance of developing breast cancer in my life.  The last 3 CA-125 blood tests I have done have increasing risen so my doctor doesnt feel comfortable not acting quickly and even chance ovarian or cervical cancer. Also, she said that if I have the hysterectomy prior to menopause I reduce my chances of the breat cancer. And to honest I would rather myself go through this versus seeing one of my younger sisters have to battle this.  My mom always goes with me to the doctor so there is another set of ears and she ALWAYS has questions.....those mom questions.  She stills see me as her little girl even at 36.

I totally agree about not always wanting to hear all the side effects of ahead of time because it can be pretty scary.  I am getting a feel of what to expect so I trying to just think about the goal line and not worry about the middle part. I so hope that this radiation is the end of all this.  This cancer has impacted my life so much.  Sometimes I when I am in my "pity me" mood I just can help to think I am too young for this. I have so many things I havent done yet or seen yet.  I try not to let that mood set in for very long but sometimes when I am all alone the tears come from out of nowhere. I tell myself everyday I can do this, I will survive this. 

Thank you for your kind words and I hope your procedure last week is your last! Its good to see someone with the positive outlook you have.  I will surely take your advice to keep getting up and moving forward.....thats the only direction we can go!

 

 

 

funbeadgirl
Posts: 163
Joined: Jan 2009

You are entitled to have a 'pity party' every once in a while, there are many emotions that a person goes through during cancer diagnosis, treatment and years later. I have a 'pity party' occassionally , I just limit the time I allow myself to feel sorry for myself, then I get on with whatever I need to do. Even now, 4 years later, I get sad, frustrated, and even angry, I recognize where it is coming from and try not to let it spill out on the people around me, which is hard. My poor husband has been so caring to me, and I get angry at him, but he is my 'safe' person, I know I can say anything to him and he won't hold it against me and he understands where it is coming from. He has his own issues with my cancer too, it's happening to him but in a different way.

You know what, at 60 I feel I am too young to deal with this also, I guess it's because my mind still feels young and wants to keep going. You CAN get through this...C.A.N. are the first 3 letters in cancer, so take those 3 letters from cancer to continue moving forward and leave the rest behind, not that you will ever forget you had cancer or that it still looms over your thoughts from time to time, but it doesn't have to control your life. You can't control what cancer does to you, but you can control how you react to it and that is where you get the control back.

funbeadgirl
Posts: 163
Joined: Jan 2009

Your are welcome, my hope has always been to say even one word of encouragement to one other person in all of this. I am sorry about your having to have the hysterectomy, but sounds like your doctor is very proactive in heading off another cancer diagnosis in advance. I hope that your vulvar cancer will be under control also.

When I went through the pelvic radiation, the first couple weeks was no big deal, just tired, but then my skin started to feel tender, not burned yet, that is why I stated before to use the creams they give you every day, and I used them more than they suggested. Keeping skin hydrated is important , with the creams and intake of water. My radiation was focused on tumor site on the vulva, near the inner labia..that area became very sore and I had open burns by the 4th week, so I had a week off then got my remaining treatments after. After week 3, I did not wear underwear anymore, just baggy yoga pants. Sitting was hard, so I spent a lot of time standing, I even painted my bathroom during my one week break from RT! It heals pretty fasy afterwards, it did for me, but remember we are all different. I also did not take a bath, I showered, used unscented gentle body wash, and pat dry very carefully and then I just wore skirts or nightgowns around the house, still no underwear. I know it was weird, but I had to do it. I was not working, I was asked to resign when I received my diagnosis and they knew I would be out with a surgery and treatments, but it wasn't the job for me anyway.

Maybe you will have the internal radiation? Side effects might be different for that too. I have always been very candid on this public forum about my experience, I will discuss anything about my cancer journey, it is cathartic for me but most importantly I do it to remove the stigma of this cancer and to show other women it is okay, you will get through it.

Yes, you are very young, when I was 35 I felt like I had my entire life in front of me, but at 60, I still feel that way. I enjoy my life very much, even with the limitations I have now, I am hopeful I can overcome them and get back to a new 'normal' for me. I would love to be able to just take a walk around the block without a cane, and break a sweat!

I will be thinking about you on the 30th, and hope for you to have a quick and full recovery. You never know how strong you can be, until being strong is your only option...not my words, but I have found that very inspiring. I also have 3 BIG reasons to overcome this...my 3 grandkids! Keep us posted when you are able to, every one here is on your side.

marieleonard25
Posts: 2
Joined: Nov 2011

Dear dmn and funbeadgirl, see we are not alone.  Sadly I know there are more of us out there.  I dearly love the C.A.N. and leave the rest behind.  I do find myself living a litte more, I never say no to an adventure and truly appreciate my loved ones as much as possible daily. 

As for clothes, you will have to wear loose natural fiber clothing and go commando (no underwear).  I had the same experience as funbeadgirl with burn discomfort setting in at the three week mark.  I also made use of cheap bags of frozen peas - which work like a charm.  I found that Lands End has some nice stretch pants which are loose in the body.  Also for daily radiation therapy you really don't want to struggle with your clothes.  It is all about being as comfortable as possible.  I wore long shirts and cardigan sweaters which provided me some modesty - sort of. 

Just so you know there is life after treatment, I gave my oncologists (all three of them) a picture of myself on a Segway in Paris just 5 months after compleating treatment. 

Please keep us posted on your surgery and treatment.  I will be checking in on you. 

dmn
Posts: 6
Joined: Jan 2013

marieleonard25,

I am looking forward to life after this treatment and Paris sounds like the perfect place to celebrate.  My husband actually told me when we found out I had to radiation that after I am done he is going to take me anywhere I want to go for a few days to celebrate.  I have been focusing on looking forward to that....the finish line.  I am so thankful for all my family because they have been so supportive.  Its just hard sometimes to explain to them how I feel.  It isnt just the cancer but the scar down my leg and the way I look down there sometimes makes me feel not very sexy or womanly.  I dont know, it probably sounds crazy its just something I dont think women who havent been through it can understand. 

The 2 weeks off for the hysterectomy will give me some time to myself and I will get on and let you know how great I am doing. :-)   

dmn
Posts: 6
Joined: Jan 2013

funbeadgirl,

 

I love that saying about being strong being your only option....that is so true. 

Thanks for the advice about the radiation. I am taking all kinds of notes so I am ready.  I am furtuneate that I have been with my employer for 13 years and they are very understanding.  When I was diagnosed in 2011 I was off from May to January and I came back without a problem.  My boss has already told me during radiation I can base my schedule around how I feel and also told me dont worry about the dress code so I plan on stocking up on loose pants. 

I will be off for 2 weeks after the hysterectomy so I will be sure to check in and let you guys know how I am doing.  After everything I have been through I think this surgery will be a walk in the park.  I'm just glad this doesnt invlove my vulva area because she surely needs a break! :-)

HALO44
Posts: 2
Joined: Feb 2013

At week 3 I started burning, 7 layers in total I lost, I went commando and wore ankle length skirts; I used KY Jelly on pads, literally soaked non stick pads in KY and applied to the girl. I have permanent hair loss in the pelvic area.

There is a video and song that helped me through all this, being stronger is a new meaning and you never alone.

http://www.youtube.com/watch?v=BaQdwTsVtCY

 

I do wish everyone the best and you will never be alone on this journey, God Bless!

mmcia
Posts: 10
Joined: Feb 2013

How long ago did you have the radiation? I had 31 sessions, I've gone from burnt flesh falling off me and now 3 weeks later I have a pretty pink labia but I still have no hair growth, I thought it would come back, how long has it been for you?It's so nice to talk to women who've been there.

 

funbeadgirl
Posts: 163
Joined: Jan 2009

I hate to tell you but the hair probably will never grow completely back. After I finished my inital radiation, it did come back about half way, but then in 2011-2012 I had chemo ( carbo/taxol) and it all fell out again, along with every other hair on my body and it hasn't come back very much since then. I don't mind it too much, but skin does get a little sensitive at times. I guess there is a reason there is hair in that part of the body, it is a cushion of sorts.

Good thing I found is that I don't have to shave my legs more than once a month now and it is literally about a dozen hair on my legs, and under arms I shave once every couple weeks, so that is nice.

Please make sure to continue using the radiation creams/lotions, it will protect and condition the skin as it heals.

I empathize with each and every person here that has experienced vulvar cancer, whatever type they have, it is all devastating in one way or another. Ladies, Be Strong and Endure!

write4us
Posts: 3
Joined: Feb 2013

Hi. I am so sorry to hear what you have gone through with your vulvar cancer. You are so young and you have been blindsided by all of this continued cancer activity. One thing about this disease is that it is tricky. You can be free of it and then it suddenly recurs.

It seems that just when you begin to have more hope, it shows up again. I hope that you have loving, supportive people that you can surround yourself with. And I hope that your cancer will subside and that you are able to enjoy your life with the ones you care about.

I was diagnosed with vulvar melanoma cancer in November 2012. My surgery was done in December 2012. I had a partial radical vulvectomy and had lymph nodes removed. My oncologist said that all of the cancer was removed but that most of the time that this type rare cancer will recur within 5 years. I will be on a regimen of being checked 4 times a year by a melanoma specialist, having periodic CT scans and blood tests to check for signs of recurrence.

I know that my cancer will return, but I am horrified and saddened by what you have endured and continue to endure. I am 60 years old and have lived a long life. You are still beginning yours. I do not know what you believe in, but I send you my best wishes and my prayers that you will be spared from any additional torment or assault on your body by cancer and that you can find some peace and happiness with others in your life.

HALO44
Posts: 2
Joined: Feb 2013

I have read many boards and protocols on this cancer, scary topic. In July 2012 I was diagnosed with VIN 3 which is the precancer latest stage of Vulvar Cancer, this was on the right side; in Sept 2012 I was diagnosed with Stage 2 Invasive on the left side. Emotionally and mentally I think I died after hearing, seeing, and reading what expert doctors were saying about this cancer. In Early October I underwent one week of Cisplatin chemo which by the way was only 30mg of which I started into complete renal failure, so I stopped them by choice; in mid-Oct I started what was suppose to be only 25 treatments of pin point radiation ended up being 25 pinpoint and 14 gamma treatments. My tumor was external 2.5 cm wide and 3.5cm long, internal is was 5.6 cm deep. I was advised that all lymph nodes had to be removed, non of which were, again by choice. On January 11, 2013 I had my final PET/Cat scan showing no cancer.

In Wisoconsin the doctors who originally has started the biopsies wanted to cut it out, had I let them to do that, most likely I would not be here to write this. Do radiation and chemo first and you decide the best course of treatment.

Since all this has been done, I now can't sit more than 20 mins without going out of my mind from pain, nor can I walk or exercise like I did before this started. I am tired of hearing from the oncologists that it is all in my head. I pray everyday that nobody goes through Vulvar Cancer, whether HPV positive or Negative, mine was the negative form which is very rare to have under the age of 64. I am only 47.

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