CHD

I had vulvar melanoma with radical vulvar surgery and bilateral inguinal (groin area) lymph node biopsies.  For some reason, ever since then I have had this chronic pain in my right groin area.  Sometimes it radiates up into my hip bone.  Sometimes it causes numbness and tingling down my inner thigh.  I have had a half dozen imaging studies, even a colonoscopy (ugh), and nothing was found.  I recently had yet another scan, the results of which I am still waiting on, but I also have lymphedema in my right foot and ankle.  It does come and go.

I share this because my oncologist has suggested that when surgery is done in any region, it is possible to have referred pain from that region to surrounding areas because nerves will be damaged (transected) in any surgery.  It is also possible to have adhesions, which are like internal strands of scar tissue, form around areas of surgery, which also can put pressure and in some cases cause pain.  I am told the type of pain and numbness I feel in the groin is very common in women who have had breast cancer with lymph node biopsy of the axillary region.  They will commonly have pain/numbness/tingling that can radiate into a shoulder or down an arm.

I am told this can last a few weeks, months, or even years.

I don't know if that is what you have.  To be honest, I don't know if it that is what I have!  But it is the best explanation I have so far.

My oncologist has been very good about watching the area for the slightest sign of melanoma recurrence.  ANY time she finds anything suspicious at all, back for a scan I go.  So far (knock on wood) I have been lucky.  I am 5 years out and have been dealing with this chronic pain for several years now.  I am learning to control my lymphedema with support stockings and physical therapy (I am pretty young for all this, but that is melanoma for you!).

I don't know if this is applicable to your situation, but you asked for thoughts/speculation, and this has been my experience.  Surgery does cut through nerves and nerve connections that have not yet grown back (some never do but many do) and can cause numbness, tingling, even aching pain, as can surgical adhesions.  It is just a thought.  My (nonprofessional) advice is to keep in close followup and make sure the area is checked regularly for anything "scary."  If nothing "scary" is found, as I tell my oncologist, then I am fine with learning to deal with the discomfort, hoping eventually it will fade.

Good luck and hopefully yours will not last nearly as long as mine!  I had 3 vulvectomies, one of them radical, a clitorectomy, and bilateral inguinal lymph node biopsies to contend with, so if you are dealing with a form of temporary neuropathic (nerve) pain, you may in fact have MUCH better odds. 🙂

Cheri 

Hi Lori,

I have vulvar mucosal melanoma, in remission now for about 3 years.  Just wanted to mention there is a Facebook group called Mucosal Melanoma Warriors that you might want to look into.  It has been around about 2 years and lots of good insight there!

Best wishes to you!!

Cheri

This is the first article I've seen that actually includes the fact that there are at least 3 reasons for mucosal melanoma having a poorer prognosis than cutaneous:  the generally more advanced stage at which it is diagnosed, the difficulty in completely resecting from some locations, and the richer lymphovascular supply of many mucosal sites.

Interesting article.  Thanks for posting!

If you talk to your family physician, maybe he/she could refer you to an interventional radiologist who could drain the node and do a biopsy.  I had an enlarged lymph node in my right groin right by my SLNB scar for almost a year.  It got bigger for awhile then stayed the same and my oncologist wasn't worried about it, based on size and firmness apparently, but when it was still there after all those months, decided to drain/biopsy it.  It turned out to be harmless.  The odd thing is that after it was drained, it swelled back up within a few weeks!  Eventually it disappeared.  There are many reasons lymph nodes swell, and they are not unusual around surgery sites, but if you are concerned, get it checked.  A lot of doctors will understand if something like that needs to be done for peace of mind, if nothing else.

I love the idea of a gift certificate (or even a once or twice appointment) for maid service to clean the house.  I love the idea above of a meal service!  Not only as a gift for a caregiver, which I have been the past 2 years to a disabled husband, but even someone dealing with melanoma and surgeries and treatments, which I have also been… both ideas seem perfect to me.  But I love flowers at all times, always.  A whole house full and I would be happy!  If your mom might feel it's a criticism of her housekeeping skills or ability to keep up with the cooking, it might be best to stick with flowers.  We are all so different.  But for me even a one-time maid service or a few weeks of meal service would have been a lifesaver!  You are wonderful to think of your mom like this!

Cheri

Hi Kimmy,

So glad you will be having the biopsy today to get an answer!

As far as some of the questions you asked me, mine was a superficial spreading melanoma.  It was 2-3 cm (fairly large), on the inner labia and across just below the clitoral region.  It had been growing for quite some time before I noticed it, and I only noticed it because it began to itch.  Unlike nodular, superficial spreading is a flat, surface lesion that can grow for years horizontally before it begins to grow vertically. It is only vertical growth that makes melanoma dangerous; that is when it is able to reach the levels beneath the skin containing blood and lymph, which is the way melanoma spreads.  That is why in situ (strictly on the surface) and stage 1 have better prognoses associated with them.

Mine looked very typical for an SSM.  It was very deeply pigmented, much more deeply than the other areas of dark gray pigmentation at other places in that area.  When I say deeply pigmented, I mean like splotches of oil paint on a palette before they are blended, so blackest black, bright white, deep gray, rust brown.  Even after having grown to 2-3 cm, it was still only around 1 mm deep and I was staged between stage 1 and 2.

I had it excised, and they also did bilateral sentinel lymph node biopsies.  Mucosal melanoma is more aggressive and that is why I recommend seeing a melanoma specialist to plan your surgery.  I don't know whether the lymph node biopsy is recommended for mucosal melanoma lesions regardless of stage, or if it is only done under certain conditions.  I am not an expert and can only speak from my own experience of course.  I actually knew none of this when I was diagnosed.  My melanoma was removed by a local GYN oncology surgeon who did the lymph node biopsies because there was a question of whether my melanoma showed signs of regression.  That is a whole other story.  But because it is mucosal, it does require closer followup, though there is no other treatment available or needed that I know of.  Not unless you reach stage 3 (lymph node involvement) do you start on a systemic treatment, to the best of my understanding.

All of that is, of course, assuming you had mucosal melanoma!  Right now, happily, there is a chance you may have a benign skin discoloration, and I will be hoping that for you! : )  If not, I am here and always happy to talk.

Best wishes to you!

Cheri

Kerri, I agree, the losses here are so sad, but it is so wonderful to hear Jake is doing well.  Praying it only gets better from here,

Cheri

Annie,

I too am so sorry for your loss.  Hugs to you,

Cheri

Rita, I am so sad to hear this.  I have followed your posts and I am so sorry for your loss.  Words fail.  Hugs to you.

Cheri

Hi Mary,

I will be at 5 years next May.  They skipped my PET CT this year, though, and I am only year 4, though I am stage I or II (depending on how you figure in the regression). 

I agree, it is reassuring to have them yearly.  I do not like feeling like I am in the dark.  I am debating on whether it is feasible for me to self-pay to continue the scans, and whether it is a good idea.  I understand the radiation exposure is siginificant, but then so is MM.  My oncologist offers a significant discount for self-pay PET-CTs, though it still comes to around $6-8k or so, so it is not exactly cheap.  I am deciding whether I want to do this next summer.  I understand exactly what you mean, and I have not yet decided how I am going to handle this.

Curious, are they offering you lung/liver/abdominal x-rays in place of the CT?

It is hard to imagine that they would not offer at least some type of minimal imaging going forward, or what the justification could be for that with mucosal melanoma.  Did they explain the reasoning?

Cheri

Thanks, Brendon.  I wondered because I have lymphedema in my right leg, the same side as my melanoma, but I realize it can also be due to the SLNB.  Still, this makes me realize I should keep an eye on it. 

Cheri

Brendon, was your first sign of recurrence the lymphedema? 

Hi Kimmy,

I am 4 years out from a stage 1-2 vulvar mucosal melanoma diagnosis with clear scans (hooray!), and there is another poster here who is more than 4 years out from a stage 3.  There are a lot of new treatments out there and one of the most important factors, after an actual diagnosis, is to see a melanoma specialist, preferably at a top treatment center.

At this point, though, I have to say another possibility is of a vulvar varicose vein.  It is best to be on the safe side and I am glad you are getting good medical care!  But there are still quite a few other possibilities.  Fingers crossed that it will turn out to be benign!

Wishing you the best!  You are not diagnosed until you are diagnosed.  Everything else is speculation and worry.  Worry is challenging, I am the first one to agree, but remember, it is not grounds to panic.  Wait til you have a diagnosis (or not); before that, it is a waste of perfectly good peace of mind. : )

Cheri