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Vulvar Cancer: Lymph Nodes removed from Groin Area...healing problems/pain.

Posts: 4
Joined: Apr 2012

I had surgery two and a half weeks ago for a very rare form of cancer in the vulva.  It's not vulva cancer but a very rare form of cancer called Adenoid Cystic Carcinoma of the Vulva http://www.accoi.org/ .  I am told I am only the 26th case in the USA to have this.   Nevertheless, I am dealing with many of the things you guys with vulvar caner are dealing with, surgery, upcoming radiation, and of course, the diagnosis of cancer (again, I am a five year breast cancer survivor).

My question is this.  I am having issues with the area which they removed the lymph nodes in my groin.  They only removed several "sentinal" nodes, but the incision is painful.  And it seems inflamed and puffy.  I had a lymph drain in for about a week and the draining slowed down quite a bit, but then it did still come out once the drain was removed.  That too has slowed down but now I'm wondering if that has anything to do with this painful incision in my groin (about 3 inches long).  It's red, puffy, and inflammed.  I don't go back to the docs till Wed. and just wondered if anyone else experienced slow healing of this particular area.





Posts: 181
Joined: Jan 2009

Dear Laura, I am very sad that you are having to experience this terrible disease of cancer. I want you to know that I understand what it is like to have a rare vulvar cancer, how alone it makes you feel, the fact that you can't find anything in research to answer your questions and no one to talk to. I have been there for 4 years, and I continue to be in that place.

I was diagnosed with primary vulvar adenocarcinimoa in Dec. 2008, but it was not in Bartholin gland. I have since that time had thyroid cancer (unrelated) and 2 metastes of the vulvar cancer in 2 different bone locations. In my first surgery, a partial radical vulvectomy, I had the sentinel node biopsy also, with 5 nodes removed and only the sentinel node positive, I did not have drains, and mine did heal very well, but what I can encourage you to do is call your doc in the morning, talk to the nurse, tell her what is going on and let them decide if you should be seen earlier. What helped me I think was that I used a bag of frozen peas as an ice pack every once in a while on the surgical site to help with swelling. Swelling can keep the area from proper healing and in the groin area, there is a lot of pressure with walking , etc. that can contribute to swelling.

I want you to know that it will get better, you will heal, but most of all I want you to know that you need to be your own best advocate for your healthcare, if something seems wrong to you, you call doc, that is why they get the big bucks. I view myself as a consumer and the docs work for me, providing a service, you are in control my dear.

You can private message me  if you want to talk about this if you like, but I am not afraid to talk about my own experience openly. If you go back and look at my posts from over past 4 years you will see that. I will tell you what I tell every one else I talk to on this board..Be Strong, Stand Firm and Carry On!

 The first 3 letters of cancer are C.A.N...you CAN get through this!  I wish you the best in your physical healing and that you can get through the next phase too. We are all here for you.

Posts: 1
Joined: Nov 2013

I am new here and I appreciate your sharing. I too have a very rare vula cancer, epithelial sarcoma of vulva, less than 40 cases ever. If it has not spread, will have radical surgeries, etc. I appreciate your sharing about this as I am scared and as well cannot find anyone with my type of cancer.  I hope to be of help eventually to others on the site. thanks you

Posts: 11
Joined: Feb 2013

In November I had the lymph nodes removed from my groin because I had a squamous cell carcenoma in my Bartholian gland. It took a few weeks for the incision to heal. If you're not better by next week I would go to your doctor to look for a cause. I hope your results are good and that you don't need too much treatment. i had two courses of chemo with two different drugs (one in a PICC line, directly into my heart) and at the same time 31 sessions of radiation. I had a bad week at the end when I went into neutropenia but really it's all been OK. Three weeks after my last radiation session my deep 2nd and 3 rd degree burns have healed perfectly and I have lovely new pink vulva/labia. I hope you come through your treat ments as well as I did.

Posts: 4
Joined: Apr 2012

Thank you both for responding back to me.

I got my last stitch out of my groin (lymph) area and that helped with the swelling and pain.  Yesterday was three weeks since my surgery and I am feeling better every day.  I meet with a radiation oncologist next week for my consultation and hope to begin radiation in two weeks.  

For those with ACCV (or ACC of any kind), do you know about the yahoo group for ACC?  Here's the link:  http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/messages; also, website: http://www.accoi.org/ which has also been very helpful.

I've received some very useful information and met a couple other women who have exactly what i have.  It's comforting (?, don't know how else to describe it) to talk with women who have the same diagnosis...it helps.



JodiK's picture
Posts: 1
Joined: Dec 2013

Hi Laura,


My name is Jodi, and I have been diagnosed with the same rare disease. I have had surgery already, on the Vulva area, AND have had 2 lymph nodes removed. Slated for Radiation and chemo starting tomorrow..... Yikes. But, so far so good. My leg was messed up for the first 4 weeks after the surgery. It really has turned a corner in the last 5 days. I am assuming a lot of it is nerve pain...hurts to straighten the "bad" leg. But getting MUCH better. I can walk a little less like Quasimoto now.

Hope you are feeling much better now. Glad to know there are at least a few others out there to talk to about this experience.

Take Care,


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