Clitoral Abscess / VIN 3

Lisa- so sweet of you to write!  I just have the catheter, no drains, etc. but that is difficult enough. I finally got the courage to look down there yesterday and you are right- does look like a zipper!!  Lol. The pain mgmt is hard though. I am used to only needing the hydrocodone for s few days and then intermittently afterwards- just rely on the RX ibuprofen. However, can’t do that here. I am a week out today and have had to go to setting alarms so I take both hydrocodone and rx  ibuprofen exactly on time. Otherwise, I am still in pain. 

The complete rest is hard too since I was so limited in what I could do before the surgery too.  

Thank you for the insights and encouragement- much appreciated!!   

Hope all is ok with you too!  God bless 

Hello - Well, I saw the dr this week for my post-op visit. I am healing very well and she took the catheter out, which is a relief. Now for the bad news. The path report came back and they had removed a malignant tumor - the biopsies had only shown VIN. it was quite large - 3 cm depth of invasion and 4.5 cm at its largest.  Margins good everywhere except the “deep” one, which only had 1mm. Dr said there wasn’t really anything else left to remove wihhout hitting urethra - said stage 1B. So now I have to go for 4 wks of chemo/ radiation to kill any microscopic cancer cells as they got all the cancer they coukd see. 

She made it sound like the chemo / radiation aren’t a huge deal, kind of like breast cancer patients who have surgery and then a few weeks of radiation to complete their treatment    Anyone have experience here?  This is a whole new level of cancer treatment for me and quite scary  on prior treatments via surgery, I always felt good that we had at least gotten all the cancer but this is different   Plus, if it comes back, it will really begin affecting quality of life even more   

One plus, glad I chose the radical surgery v going with the recommendations of the dr from the well - known cancer center who recommended more biopsies  sometimes it pays to go with your more conservative gut!

Hi Accountantmom. Wow, that SUCKS.  You’re right of course that it's great that they did the surgery rather than biopsies.  And we're all fortunate to have good care.  Seems to me that the ladies on this forum all have doctors who are warriors.  No one is going to die due to to this awful condition.  But...I'm so sorry you're not through this nightmare yet. You're going through hell.  Keep going!!!  (Credit: Winston Churchill.)

Please continue to post to let us know how you are and what's happening.  Spare no details.  We certainly can take it!  This is the place you can and should unload.  We all care about you and support you.  We really do.  (I've sent up a few prayers for you.)

I don't have mucg intel for you about what lies ahead with the chemo/radiation therapy.  But my story may help you with questions for your doctor.

I had surgery for stage 1B vulva cancer on November 7th 2018.  My tumour was close to my urethra and alot smaller (less than 2mm deep).  I was warned before the surgery that they might have to remove some of my urethra.  But thankfully they didn't.  The post - surgery pathology showed a clear margin at deepest point of invasion of 8mm.  So the catheter was in for a week and all is fine in that neighbourhood.  Except (and this is gross, spoiler alert) given how close she had to excise tissue beside my urethra, the gynie onc surgeon left a large wound to heal "by secondary intention", ie no stitches at that area beside my urethra. Lower down she did stitch.  Result :  pain and hypergranulation tissue that still hasn't finished healing.  Daily OTC painkillers still.  I cannot wait to go back in three weeks to see if she can do anything to help now that the main area has healed.   Plus I do worry about recurrence because the pathology showed VIN on one of the margins.  I've had lichen sclerosus since 1995 so this is a long-term war.  Not over yet, I fear.

Anyway, you may be interested in what my surgeon said about chemo /radiation with early stage vulva cancer.  She said that she would do it only if it recurs.  Because once you've had that therapy, further surgeries become more difficult in that area because the healing is more challenging.  My surgeon's words were :   "If it comes back, God forbid, I don't want to be operating in a field that's been radiated.".  I did some googling and learned that it can be challenging to get a good blood supply following surgery on an area that has been previously radiated.  Some commentators wrote about the need for skin grafts.  Ask your team about that.  Tell them what I've heard from my surgeon. It may be true that it's not a big deal to have the radiation / chemo.  But what does it do to future procedures if the cancer recurs?

My surgeon operated on my groin lymph nodes to find out if the cancer had spread.  Both sides.  I had "JP drains" for two weeks.  One groin site got infected, it was heaps of fun. But thank goodness both groins were clear.  My surgeon had said that I would have to have radiation /chemo if they found cancer cells in my lymph nodes.  I was lucky.  Ask your doctor if that's something that should be done.  

These doctors are balancing recurrence risk with quality of life issues.  

Definitely you should ask lots of questions.  And please let us know how you are.  

Love & strength.  

Jane Doe - thank you so much for your reply- so helpful!!  Yes, I am going to ask the questions you mentioned as well as why we can’t do re- excision. We have not done anything to biopsy my lymph nodes but they were clear on the MRI. Some of the literature suggests that should be done anyway and so I plan to ask about that too. As painful as it is, I prefer surgery to other forms of treatment. 

After all of this, I plan to continue researching, asking a lot of questions and getting 2nd opinions.  There frequently appears to be no 1 100% clear course of treatment and so more info & discussion is better.  

Thsnk you for the encouraging words as well. After such a big surgery, I was so hoping to be done but now here we are with a whole new phase of treatment issues. So discouraging. 

Sounds like you have lots of your own issues to deal with and    so thanks for taking the time to write. Best wishes and god bless!

Accountantmom

Very wise.  Hey, this may also be helpful to you.

I should mention one thing regarding the re-excision issue.  I didn't include this in my story above.  I had that.  My gynie onc surgeon recommended it.  Here are the details:

On August 29th 2018 I had a partial vulvectomy (not radical,  no lymphodectomy) because my July biopsy couldn't rule out cancer.  I was a cancer concern, not a cancer diagnosis.

The pathology results from the August 29th surgery (which took six weeks to be returned, argh) showed definitive early stage (less than 2 mm deep, as I said above) cancer tumour with inadequate margins.  At that point I was referred from my gynie surgeon at a general hospital who specialized in diseases of the vulva, to a gynie onc surgeon at a cancer hospital.

The gynie onc surgeon did my November 7th re-excision (but of course it was larger, ie radical) and the lymph nodes surgeries.  The November 7th surgery was a triple-incision three-hour affair.  The surgeon had hoped to do only sentinel node biopsies but a couple of nodes looked suspicious when she was doing the surgery so she ended up removing four.  All were clear.  The lymph node surgery want that bad.  JP drains and an infection, yes, but they've healed perfectly and I have no lymphademia.  She told me in the old days (when she started practice 25 years ago) she would've removed all of the lymph nodes in both groins.  Now they have awesome techniques to detect the sentinel nodes and no longer do such drastic lymph node removal for stage 1B on the primary occurrence.  Recurrence will be a different story.  I hope it won't be mine. Stay tuned.  

I wonder if the lymph node surgery approach is one you should ask about, yes.  

Bear in mind that I'm at a significant risk for reoccurrance.  You may not be.  And the relatively much larger size of your tumour may make radiation /chemo the prudent course.  

I'll be very interested to hear how it goes, my dear.  Especially if you get a second opinion.   Hang in there.   

Thanks. This was actually my 3rd cancer diagnosis and 7th surgery. The first was to be on safe side for a small lesion but the ob GYN found 1a cancer and so the GYN onc had to do surgery to widen the margins. Had 2 other WLEs for VIN and 1a cancer by my GYN ONC but then nothing from late 2015 until fall 2018. 

So everything was 1a until now and all the biopsies in fall 2018 only indicated VIN, even though we now know there was a lot of cancer.  (They put me under to do several biopsies plus check some uterine issues, which were fine.). Previously there was a high risk of recurrence due to continuing LS and the clit abscess but now not sure as they have removed almost everything, except any lymph areas.  Am definitely going to understand approach there better - this is what we were worried about when we decided to do the radical vulvectomy, ie cancer hiding under the clitoral abscess. Need to make sure it isn’t hiding elsewhere such as lymph areas, in addition to the margins.  

Am actually working with 2 GYN ONCs as my dr for 5 yrs changed practices right before the major surgery in February and so had to find new one.  They did the surgery together, with old one observing and so that was good.  Am going to make sure both agree on next steps.  Before my old dr said he was leaving, got a 2nd opinion in December from a very well known cancer center (dr 2 at time but now doc 3!) but they only advised more biopsies.  Glad I didn’t do that as we may not have even found the tumor yet.  Because I didn’t have confirmed, active cancer, they wouldn’t let me make an apptmt with the cancer center, only with colposcopy clinic but at least it was with the GYN onc on her monthly visit.  Disappointing experience given what we now know facts were.

i am definitely planning on getting 2nd opinions- will keep you posted  

Please do.  Thank you for this additional info.  Makes me realize our situations are more similar than I thought.  Which, weirdly, gives me comfort.  Sisters-in-arms.  Omg you've been through the wringer.  Let's keep sharing details and gynie onc info.  As you know, it's tough to find a friend who can relate.  

I'm going to eat chocolate now.  

Great minds think alike!!  I am currently eating white chocolate with strawberries!

Accountantmom, First I want to say, "Are you kidding me?" I hate that when you finally start to feel normal again pathology comes back saying more surgery needed.

I don't want to be 'that person' who other's say, oh every time I say something she's already had it....but unfortunately just like like having my clitoris removed I've also had the chemo and radiation afterwards too because the cancer had attacked my urethra. I disagree with your doctor comparing the chemo and radiation to someone with breast cancer. When you have radiation in that area you have to drink tons of water in order to protect your bladder from radiation. Like Jane Doe said her doctor told her that once you do radiation and chemo (probably depends on how many treatments) your tissue is so damaged that it is no good anymore for excisions because stitches will not hold. 

I had six weeks of chemo called Cisplatin which is supposed to make the radiation more effective. The chemo treatments were every Wednesday and took about 4 hours and I had 25 rounds of radiation. The first couple weeks are fine then you begin to get super tired but that's not bad...it's the damage the radiation does down there to your rectum, your vagina and all surrounding areas. The burning and rectal spasms are the worst and the radiation continues to work on your body for weeks after your treatments. I ended up in pelvic floor therapy working with dilators in both my rectum and my vagina. The most horrendous diarrhea you can imagine then loose stool and no controlling when you have to go. I've pooped my pants so many times. 

After all of that and being away from my family from Thanksgiving 2017 until January 5th, 2018 for my treatments that completely changed my life....my cancer was still there 3-months later. I let my doctor continue removing pieces of my urethra, I even had to have a new opening made, just to let me have a normal life as long as I could. I finally had to have my largest surgery one year later to have my urethra removed. Not only was my external tissue too damaged to hold sutures but my bladder tissue was as well. 

I know it's a lot of information but let me say, I am still not done with all of my surgeries related to my biggest cancer surgery last January and my doctors won't let one surgery be done because they don't know if my intestines are too damaged like my bladder was so I am in limbo with my supra pubic catheter that comes out my lower abdomen for now.

My doctor said when my cancer returns again, and she is certain it will, it will show up in my rectum or continue to localize in my body...if that happens, I will not have radiation again. 

Please ask as many questions as you can about the radiation route they intend to pursue. I don't want to scare you but we have another beautiful survivor on this site her name is Paula and she and I have been talking for a long long time; she was also not prepared for the long term effects of the radiation. You are in a very tough place because you may need the radiation but what if it comes back?? 

So so very sorry.
Love, Lisa

Thank you for the info. Oh my, she mentioned 4 wks of chemo and radiation but these effects aren’t at all what she described. She said I was 1B with a good overall prognosis but this sounds horrible. (I may be mistaken but one of Paula’s posts made it sound like she had given up on treatment and was doing palliative care only - is it that short a leap from where I am to that???). 

I was very concerned before but I am terrified now.  I have been seeing my GYN onc faithfully every 3-6 months for years and so am very distressed to be in this position.  I need to ask lots of questions and potentially get additional opinions.