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Vulvar Cancer Diagnosis & Treatment

sadiesmom17's picture
sadiesmom17
Posts: 6
Joined: Nov 2015

Hi

I was recently diagnosed with a vulvar sarcoma. I had surgery on 10/15 to remove a large mass which turned out to be larger and went deeper than the surgeon anticipated so the surgery lasted 3 extra hours. I spent 2 nights in the hospital but have been home and I have used Motrin for pain management. According to the pathology report there is still some of the sarcoma left. I will be having radiation treatment and meet with the radiologist on Wednesday to find out what the plan is. On the negative side there is more of the tumor inside and on the plus side it seems to be a slow growing sarcoma.

I am just beginning to realize that I have cancer - and that my life has and will be changing in ways I didn't anticipate. I'm wondering if others have had difficulty getting their heads around all this and how they processed it.

Thanks

Dale

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Dale, I am sorry you have had to find us, and to answer your question about difficulty getting their heads around all this???  Holy crap!!!!  Everyone is different but it took me a long time.  I remember sitting in the office of a breast cancer suvivor and asking her how I was supposed to wrap my hear around this???  She said, "not today", and she was right.  This is a journey, and I thought the best way is to take one day at a time.  

I think I can guess what you are thinking and I won't tell you not to do it, because you will.  I tried not to get too far ahead of myself.  In the beginning I was thinking about what that would be, or what would I do if this happened.....then I just decided not to worry about it.  One day at a time.  I would deal with what I had that day and that was it.  

Just my two cents.  Try to take a breath.  Hugs

sadiesmom17's picture
sadiesmom17
Posts: 6
Joined: Nov 2015

Hi and thanks for responding.

Some things have changed since yesterday. I went to the radiology oncologist and after looking at the pathology report and having spoken to my surgeon previously he said I could go ahead with the radiation but his recommendation was to have further surgery to remove the parts of the sarcoma that are still present. The surgeon couldn't go farther as the operation was 3 hours longer so he could get out as much as he could. I meet again with the surgeon to get some consensus about what to do. 

The radiation/oncologist said his thought (and also the textbok protocol) was to get the last pieces of the tumor out and then have the radiation if necesary. 

This seems logical to me and might give me a better chance at long term survival.

I spoke with another doctor (who has proscribed my antidepressant meds for years) and she agrees that this seems logical to her also.

I know that I will have more info after I see my surgeon on Monday but am grateful for any help that anyone can give me.

Thanks so much

DaleLaughing

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Dale, vulvar cancer is rare so I don't know how successful you have been in finding other women out there with your cancer.   Please come back and let us know what your surgeon says.  Sometimes people will post once and never come back to let us know how they are doing.  I am so glad you let us know, I was wondering how you were doing. 

sadiesmom17's picture
sadiesmom17
Posts: 6
Joined: Nov 2015

Hi

Sorry I haven't replied sooner. I just came home from my 2nd surgery - this time to remove any remaining sarcoma along the margins and to increase the margins. This was more extensive and involved surgery and I have a whole line of staples across my vulvar area. The pain is worse this time but since I left the hospital I have been using only Motrin which has worked ok so far. We are waiting to get the report from the patholgist to determine further treatment which we think will be radiation. Not till January if I have anything to say about it!

The only problem is that I have to inject myself with Heparin and I hate needles. I did the first one yesterday and it really stings. I read that ice cubes work well to numb the site so I'm going to try that today. Anyone have experience injecting themselves? I would appreciate any suggestions anyone might have.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Just Motrin - you are the woman!!!  Wow!  

I can't help with any advice on the injection, I am always surprised with what we find ourselves having to do, but if you have any friends who have diabetes and have to give themselves injections maybe they can suggest something??  

Be gentle with yourself!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I am sorry to hear about your situation, but I probably would've opted for further surgery if I was in your shoes. No Time has given you great advice. She is so often right there to give support and encouragement to members of the below the belt cancer forum.  I was diagnosed in 10/13 with uterine cancer and I still struggle with wrapping my mind around it. It can happen unexpectedly to anyone:  young/old, athletic/couch potato, etc. With time, it becomes easier to live life in a somewhat normal way, as in "before cancer". Your body will heal and you will feel almost normal and then normal. I feel great with no signs of recurrence. I am committed to move forward regardless of what cancer may do to me in my future.

I wish for you the very best outcome.

Warm Wishes,

Cathy

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Hi hope you are well. I'm curious what symptoms did you have? I was diagnosed with vaginal cancer on July 31 2014 cancer was the farthest thing on my mind

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

sadiesmom17 hasn't been on the chat boards since Dec 8, so maybe she just got busy with the season.  Hopefully she will stop back in and let us know how she is doing.  

2changes, how are you doing?  

sadiesmom17's picture
sadiesmom17
Posts: 6
Joined: Nov 2015

Hi everyone!

I'm sorry I've been gone a while. After my surgery in November it took me quite a while to get my strength back. I am still trying to get my head around the fact that I have cancer. I saw my Radiation Oncologist in January and we decided to go forward with a round of radiation. Even though at this moment I am "cancer free", the radiation will add some additional protection. My Doctor said since there is up to 30% chance of my sarcoma returning and surgery is no longer an option (and it does not respond to chemo) it would be wise to do it. I agreed. On Friday I will finish my 3rd week. However I have had some troublesome issues. The radiation caused a BIG yeast infection. Even after a round of antifungals it is still there. I did discover a good topical cream - yogurt! Plain white yogurt with cultures really does help with the burning and itching. I applied it 3 times a day and was glad of it.

However, a bigger problem is that there is now some skin burning. The skin on the outside and inside the vulva has ulcerated burns. I have read some horror stories of bad burns which resulted in need for morphine/hospitalization but this is not like that and hopefully won't be. But it is uncomfortable. I have to do "sitz" baths 3 times a day and am also not doing radiation next week so the skin can heal.

I appreciate the support that I have gotten here and bless you all for it.  I will try and do a better job of updating everyone.

Blessing,

Dale

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Dale, so good to hear from you.  I am so sorry to hear this development and, having not had external radiation burns, my heart goes out to you.  Thank you for sharing your problems, as scary as cancer is, we need to talk about the side effects of treatment.  How did you discover YOGURT was the go-to help?  

I am praying for a speedy recovery on the burns.  Hugs!

sadiesmom17's picture
sadiesmom17
Posts: 6
Joined: Nov 2015

Hi,

I read on the internet about applying yogurt to the burned skin on the outside. It did help quite a bit and then I started using Aloe and Calendula Oil (both recommended by my radiation nurse) and they all helped.

I did use a sitz bath which helped a lot! Urinating was quite painful and I learned to use the sitz bath after doing that. The yeast infection caused by the radiation is also better.

I am much better after a week off from radiation - the burns are either much better or gone and so is the painful urination.

I started back on radiation yesterday (Monday) and might be finished Friday the 11th - not sure yet whether he will add a 6th week or not. I hope the burns don't happen again but if they do I have some tools in my toolbox to help.

So, all things considered I am doing better. I still am having back trouble from the movement of the radiation table but my chiropractor is helping with that and it should calm down when I am finished treatment.

The radiation part itself is nothing much - I am in and out (changing clothes time included) in 1/2 hour.

Blessings to everyone on this board!

jaac77
Posts: 1
Joined: Jun 2016

My mother was diagnosed with vulvar cancer and had a radical vulvectomy and lympadenectomy in Feb. She is getting near the end of her radiation treatments now. She is suffering from burns as well as diarrhea. Overall, however, she is doing pretty well given all she has been through. She still has cancer in her pelvic nodes but it is getitng smaller. She will proably need chemo after all this.

Hoping you are doing well. Would love to hear from someone who has recently completed the raditation treatments.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Dale, how are you doing?

Hessiesmom
Posts: 1
Joined: Oct 2016

hi I am the mother not the patient , I have never had anyone in my life with cancer so this is hard my daughter is only 27 and has been informed that her biopsies performed back in April 2016 yes 6 months ago needed to be discussed with her all we know is vulvar stage 3 in nodes what ever that means and told basically do not wait get oncologist surgery needed , we have finally got appointment on Monday at cancer center and now it's just wait was given a bit of reading to do about vulvar but that just makes you more afraid , we had been told this all may happen very quickly following the initial appointment and I'm just hoping someone can offer some basic guide as to this entire process as she has 2 young children I need to plan to care for in addition to helping her with what ever may arrise and I don't want white wash just real hard cold truth so I can understand get past the shock and help her fight like crazy so anyone with any I site as to what we should expect and a general idea of down time ect would be so appreciated 

strongerthanithink
Posts: 2
Joined: Nov 2016

Hope everything is going well with your daughter.  From the dates..it looks like she is probably 1 month out from starting treatment. I have found the holidays is a hard time to go through all this..but also support from family is soooo important.

 

strongerthanithink
Posts: 2
Joined: Nov 2016

I just had a 3rd surgery November 1 and am waiting for my chemo every monday with radiation the other days for4 to 6 weeks.  I will not meet the radiation physician for another week and am ready to get started.  I am glad to hear the radiation treatments are rather quick.  Also needing to hear about burns and yeast infection side effects.  I do not want to worry but feel I need to prepare myself by getting educated.  My 1st surgery was Jn 2015 when I had a lump removed from the bartholin gland that came back squamous cell cancer. I had a more complete resection 8/15 sentinel lymph node mapping..one left inguinal node resected  precautionary..  my f/u pet scan showed return of vulvar mass snd I had a +biopsy and than resection of a pecan size tumor.  

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

stonger, it is nice to meet you and I am sorry it is under these circumstances.  I am a Uterine survivor but some of us keep our eye on all the 'below the belt' cancers here.  Vulvar cancer is rare but there are women here who will listen and support.  Our cancers are different but those of us who have been around have read and learned a lot - so if we can help  - we will.  Please let us know how you are doing.

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