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Newly diagnosed with melanoma on scalp - just had a baby, very nervous

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Newly diagnosed with melanoma on scalp - just had a baby, very nervous

Posted By
Jw2457
11/8/2020 12:28am
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Replies: 11

Last Tuesday I received the biopsy results for a spot I found on my scalp (new mom, dirty hair.. scratched head and felt bump. Decided to go to dermatologist ASAP as spot looked.. not great. Had no idea it was there previously). It’s melanoma. The biopsy was truncated so it’s at least .9mm deep, could be greater.

The pathology report says: “Outside pathology report from 11/01/2020 was reviewed showing right vertex scalp shave biopsy malignant melanoma, at least 0.9 mm to the base of the specimen, no ulceration. Peripheral margin is involved by invasive melanoma and melanoma in situ. Deep margin is involved by invasive melanoma and melanoma in situ. No lymphovascular or perineural invasion. Tumor regression present.

Can someone help me understand what some of this means? Is there any good news to glean? I have a lymphoscintigraphy with SPECT scan and WLE scheduled for Nov 17 at Washington University/Siteman Cancer Center. I will likely do the flap reconstruction (I think that’s the correct name?) so I can hopefully keep a full head of hair.

I’m so nervous. I have a 13 week old and a 4 year old and this diagnosis has me shook. I grew up in FL and my mom was not great about applying sunscreen and doesn’t at all for herself so this is likely stemming from my history of bad sunburns as a child. As an adult I am far more responsible and have never used a tanning bed.. I generally wear sunscreen if I’m outside for any length of time and am obviously looking at adding SPF into my DAILY routine now. I can’t stop thinking about this somehow affecting my ability to watch my children grow up and I realize my diagnosis isn’t horrible but not knowing it’s true depth or if it’s spread.. the idea it could come back.. this is new and terrifying.

If anyone can offer some explanation of my path (to my surgeons credit he DID go over some of this we with but I was overwhelmed and didn’t know what to ask—ex. He didn’t mention regression or lymphovascular invasion.. I have no clue what those things how they affect my situation.

I’ve also only had surgery as a 12 month old, outside of my wisdom teeth so anything to ease nerves about that or the reconstruction would be.. appreciated. I’m a mess, sorry! I know positivity plays a huge role in these situations and I am mostly in good spirits but it comes in waves and right now I’m low.

Thanks in advance.

heh JW. your pathology is too complicated for me to comment on, but soon enough you will get some pretty expert responses.

posters has been a little thin this week for whatever reason so have patience.

Hey,

Sorry you are going through this. I can understand the nerves - I was diagnosed about 8 months ago. I will say that my condition was likely much worse than yours and I'm still doing fine :). I'm not a doctor, so I may not have everything right. I'm sure someone will explain better than I, but typically we see depth as a big factor in risk. mine was around 3.5mm, and yours looks to be at least .9. No ulceration is very good (mine was). Also no lymphovascular invasion is also good - it means they can't detect any melanoma cells in the lymphatic vessels next to your melanoma I believe ( also had this, which is bad haha). Pernieural invasion is kinda like lymphvascular invasion, but for nearby neurons(I believe). Finally, tumor regression is interesting. I don't think we have any answer of whether it is good or bad. It means that the tumor is regressing (going away kinda?).

My path will likely be similar to yours, though your chances are, right now, quite amazing. Basically the surgery is pretty easy, you won't remember any of it since you'll be under. I did prescans to make sure things weren't spreading, consisting of an MRI, CT, Chest X-Ray and blood work. The worst part about those is the anxiety for sure. Just know the odds are really in your favor. The day of surgery I had the CT scan where they traced the lymph node path. The injection hurt a bit, but the rest was just laying there until things drained. The surgery day was mostly just waiting around. They took part of my ear and 4 lymph nodes. Mine was near my neck so my neck was numb. It actually helped a bit because I had not surgery pain and didn't even need pain medication. Likely the most sore part will be where they take the skin graft from. Beyond that they'll test whatever lymph nodes they take and you'll officially get staged. I was staged 2b, which is the highest local category. Technically there are not treatment at this stage so it is really just watch and see. You will have more monitoring visits and may have scans, probably yearly, to make sure all stays well. I did a clinical trial and it's required some driving, but that's about it.

Honestly I've had lots of scares, where I thought melanoma was back. But nothing had turned out to be melanoma. So really the worst part of this whole experience so far has been anxiety. I understand the kids things as mine are quite young as well. About the only issue I have now is that my neck is tight on occasion and still a bit numb near my ear. It's also worth thinking about something like a counselor or even anxiety medication, especially to get your through these early months.

Sorry, I'll also add that there are peripheral melanoma. I'm not sure how that affects staging, it just means there is melanoma around the melanoma they took. These are probably considered satellites? but I guess could potentially be a second melanoma. Once again, I don't have a good grasp on what that does to staging/risk/etc. but someone else will chime in and add some more expert advice.

Hah well good this is consistent with what my incessant googling has told me..thank you! The peripheral involvement of the melanoma isn’t necessarily surprising because they told me the biopsy specimen was truncated as in it was at least .9mm but I’m assuming a clear margin wasn’t achieved at the base when she performed the shave biopsy and the sample had melanoma all the way to the bottom of what she removed? I just hope it hasn’t spread. I know treatment is generally good these days but I am just so worried about being a present parent while going through such a trying thing. I know people do this every day, some much worse off than me, it’s just all so scary right now not knowing the extent to which we’ll be affected.

so yeah, your in the doc's office and he is telling you alot of things. Ur reassured. Then you leave and start thinking of the questions you now have.
2 thoughts...write down what you have now . Also if your doc has a patient portal you can pose questions there and get answers back pretty quickly< Its basically a website for appointments and such, but confidential and most docs, clinics and hospital have them. i use them alot . I had mouth soreness, sent an email thru Patient Portal and teh onc called pharmacy for suitable prescription within hours. otherwise it would have taken days get this guy on the phone.

just as boatski said, my SLNB procedure was a breeze, being asleep for most of it. no lingering after effects after 4 axial LNs removed.

you mentioned surgeon, and i guess you are referring to an oncological surgeon. Mine was extremely informative. Not all oncs are melanoma specialists but onc surgeons are onc surgeons and should quite capable at removing LN's without complications.

indeed the strategy is to do nuclear scan(SPECT) which involve radio active die, to determine location of involved LNs, remove, and then do the WLE . both operations should take place together.
lyphomscintigraphy is a very complicated word to describe mapping the lymphatic system using the above mention die. SLNB is the removal of the LN. Mostly we talk about SLNB or LNB because that it the actual removal of the cancerous LNs. and, which is what we care about. Its also alot easier to spell.

there is risk of lymphodema from any LN removal and my oncological surgeon discussed with me in great detail the choice between removing only involved LNs and say all of them from a region In my case the axial region(armpit) . The more LNs removed, the more risk there is for lymphodema. I had 4 removed and have had no problem. i think there may by 14 or so more in the one axial region and there was the idea to remove them all as a precaution. So you balance future LN involvement vs. lymphedema. My onc surgeon left that decision in my hands and i decided to minimize risk of lymphedema. I was going to get immuno drugs anyway, so if there were a few melanotic cells undetected in other LN's , my hope and reasoning was the therapy would destroy them. Lymphedema even though treatable just didn't seem like something i wanted to risk.

its very important that you understand, i am not saying i was right or that that was the best medically sound decision, its just the choice i made for myself.

Thank you, this is all good advice and very helpful. The surgeon I’m going to was who my dermatologist referred to and she told me that use him frequently for melanoma cases, I don’t know that he’s a specialist specific to melanoma, but his clinical expertise is Head and neck oncology, head and neck surgery, microvascular reconstruction per their website. I am glad to hear the SLNB wasn’t awful.

you sound very informed but still i want to be as clear as i can so there is little confusion.

the 'surgeon' is likely an oncological plastic surgeon. mine was. i got a referral from my Derm, who , also referred me to and oncological doctor to deal with the cancer treatements.. Once the surgery is done you likely will never see the onc surgeon again. i am not suggesting onc surgeon need be melanoma wise, he is just removing cancerous lymph nodes , same as if they be melanoma or breast cancer. He is the doc i discussed most compressively SLNB v CLNB. he definitely leaned SLNB only. My onc doc wasn't that helpful in this decision making.

and really this was the only decision I had to make , solely on my own, using my own judgement. yikes!

Hello,

I am not the patient but I wanted to give you some hope. In 2008, when there weren't the options there are today my husband had a 10.5 mm Melanoma removed off of his scalp. His WLE was 10.5 cm and his SNL was negative. He had the skin graft which he said was the worst part of the procedure as far as pain. He had several more surgeries because there was nothing for Stage III at that time. He proceeded and became Stage IV in Oct. 2010 and started a clinical trial in March of 2011. He became NED (no evidence of disease) in July 2012 and has remained that way since which is over 8 years. If you would like to read more check out his profile.

The now have treatments for stage III which they did not when he was diagnosed. And a lot more treatments to consider. He is still going strong and his age was much older. So here is hoping you will find something that is successful for you and live a long life and watch those children grow up and do lots with them.

Judy the loving wife of Gene Stage IV and with a clinical trial of Ipi (Yervoy) and GMCSF he has been NED for over 8 years.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Hi there,
Not a good time to get cancer. If it’s ever a good time to get it.
You understand the biopsy results correctly.
They didn’t get clear margins. They will find out how advanced it after the surgery and will stage it appropriately.
I would expect not being able to wash my hair for at least a month and some tightness in the neck after they remove lymph nodes. The surgery and recovery should not be too bad.
Get back here for support after more results available. Hang in there.

I forgot about the hair. No, you won’t be able to wash your hair for a long time. I cut all my hair off with a pair of kitchen scissors into a pixie cut. The next time I just had a proper hair cut I’m advance. Whatever scalp wound you have but most easily be cared for without a lot of hair. I have seriously nasty scars none of which are noticeable for the most part.

\Congratulations on the new baby, because that is what really matters. I hope this pesky business on your scalp doesn’t color your time with your infant. My youngest was two and still nursing when I had my initial melanoma removed. It was a truly terrifying time. Couple of notes it sounds like you are receiving the standard of care and things are moving along. Try, as much as possible to refrain from googling melanoma,a information because almost all of it is outofdate unless it is a dedicated melanoma site. Also try to not borrow trouble. I was able to nurse my infant the same day as my WLE and I came home that day. My ugly, nasty wound on my neck healed beautifully. My neck is a little stiff from four lymph nodes being removed but not really noticeable. I was stage 2B. About five years later my Brian met and minor additional spots were found and I was stage IV.