Biopsy staged Pt1a - Terrified!

Oh and Ive asked for a pathology report on this WLE and should get it by Monday, let you know more after that.  

I'm waiting for my WLE at the moment and I remember they warned me that there may be nerve damage. This could explain your symptoms. Why not call your nurse specialist for reassurance? 

Kate

Dear Kjack I am sorry that you have had this diagnosis and endured the WLE. I comment from personal recent experience of WLE and also having removed hundreds of tumours albeit as a vet! My WLE was on my neck. I experienced all sorts of odd  nerve sensations in and around the area and my ear is totally numb. Odd twinges around my neck convinced me too that the tumour was going all over the place. In reality, these sensations I believe are innocent - just the result of both nerve damage (mostly temporary) and likely muscular from tensing yourself during the painful post op period.  Unfortunately my WLE was too late and melanoma masses are growing in local lymph nodes confirmed by needle biopsy. I now have an agonising wait for immunotherapy to start in 2-3 weeks time.  My point to cheer you up is that the lumps growing are currently quite painless although very visible and palpable. This reinforces my hope that your pains are not more cancer - just reaction to the significant area of surgery. Stay positive. Your twinges and pains may well subside. Try to get mobile as quickly as your medical advisors permit - that will help calm muscular spasms. Good luck.

Thank you Kate and I will call my nurse, I have been waiting on my pathology report I was suppose to get today and it did not come which is making more anxious.  Good luck with your WLE and I bet thats whats happening to me, it seems to have eased up just a bit, so I hope so.  

Hi Siegfreid, thank you so much for your response and I bet you are correct.  I think the more I concentrate on one little pain the more pain I get in.  I didn't think about it, but I probably am tensing up.  Thanks for the advise I feel like I def need to try to get back to my old self and walk more and try to get my mind off of it, it's so hard once you get that "malignant" diagnosis.  You have a positive attitude and I need to follow your lead.  Thanks again and well wishes for you!  

Thanks Kjack. My attitude is that I don't cope with this melanoma. It's going to have to cope with me! Good luck and stay positive!

Well Im back with more questions.  The surgeon told me the pains and twinges in my leg were normal and that it could take up to a year for that to go away.  I have noticed it's getting better each day, so that's a relief.  I finally got a copy of the pathology report in my hands.  Which its scary to me to read, Im trying to stay optimistic.  The report says maximum depth of residual malignancy 0.24 mm >  does that mean leftover tumor from the biopsy?  Because then it states the stains confirm the presence of residual nodular melanoma.  That's the first time I heard that word. Also it says my tumor site : Scalp , but on back page it says specimen and source: right calf, clinical info: left calf???? Confusing??  The spot is my right calf. 

Hi Kjack.  It does rather sound as if there is tumour left behind. not the clearest of wording. I guess if the pathologist is writing dozens of reports a day under pressure they might say 'scalp' instead of 'calf 'in the report in error. But if it is your name on the report it will be your tissue and I guess he/she does mean 'calf'. You need to ask your med team what happens next. Not my place to speculate but gear up for further scans, possibly more surgery and/or some therapy. you can be sure your team will be thorough and do what's best for you. Prepare for worst - hope for best. Good luck and keep positive - it is a powerful weapon. 

Don't wait for them to contact you - call your liaison nurse. The contradiction on your path report needs to be reported back to the path lab.

Hi Kjack,

I can only comment based on my own experience of reading my biopsy report - I got some things right and other parts I misinterpreted wildly. The surgeon explained it all to me when I went for my consult prior to WLE and SLNB.

Mine said NM at one point and then superficial spreading at another. It turned out the NM was ""nearest margin". That's just one example of how I was confused as a lay person but the report made sense to the surgeon.

I am going to take guesses here with your report - perhaps the right calf is where it was and clinically it was on the left side of the right calf, and maybe scalp is an abbreviation for scalpel or something crazy like that. Mine was literally that odd to an untrained eye. 

If it was removed with clear margins then it's now gone, so any reference to anything residual is now out following the WLE.

I tried talking to my SCNS but she couldn't help with mine, and I ended up taking it to my next appt for the surgeon to explain it.

Do you have another appointment for follow up with plastics or dermatology? I guess that either medic could talk you through anything that's not clear.

Try not to worry - and believe me I know that's easier said than done!

Take care,

Kate xx

Oh my gosh, that makes me feel better.  They acted like they were done with me and no need for SLNB unless I had problems in the future.  Still of course checkups for the next five years.  But I totally understand the right calf, left calf now, because that is correct.  The scalp is still totally confusing. And yes it said No tumor present at margins of excision.  It does say "stains confirm the presence of residual nodular melanoma, but maybe that's true but they got it all?  Thanks again and you also take care!