New Patient

Posted By
Savymoo23
8/6/2018 11:58pm
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Replies: 7

Hello everyone, I'm kind of new to all of this. 

Just wanted to post a little bit of how my last week has been. I'd love to get some of your input for a new "patient" of the skin cancer world. 

I have had a funky mole on my back for quite some time, my mother was the first one that noticed it about two months ago and I'm not sure how long it had been really been looking bad. She advised that I go get it looked at, and of course I milked it for about a month. I then went in to get it looked at by my PCP on 07/23 and he requested that I come back Friday to have it removed and sent to pathology. I came back 07/27 and had my mole removed (he showed me the mole after removal, it was very crusty and very black.) I honestly didn't think much about it, because well I'm 22 years old and I am very very careful with my skin (my mother has scared me my whole life about skin cancer). I then got a call from my PCP on 08/01 and he asked me to come in after hours at 7 PM to go over my results. So of course I then got a little nervous about what he was going to tell me. I went to my appt with a friend (my husband was at work of course.)

He came in and just immediately got to talking. He showed me my labs and how I had a Malignant Melanoma (Invasive). Then he sort of broke down what my labs showed and why they weren't so great. Here was some of the pin points he showed me that made him worry: Thickness: 4.6mm Clark Level: V Vascular Invasion: present Tumor infiltrating lymphocytes: non-brisk.

So since that day I have been waiting a week to see a general surgeon and form a treatment plan and to hopefully get some more answers. I have basically been trying to educate myself as much as possible just so that I am 100% ready for the best and worst results come this appt. I'm just curious what every ones take on these results were? I can give more info if needed. I also want some good questions to ask the surgeon in two days. Wish me luck!! Hugs!    

Oh and PS: Is a PET scan super needed? I heard that should be done, I'm just curious.

Savannah Price

SABKLYN - (8/7/2018 - 8:13am)

Good Morning, Savannah,

Sorry that you need to come here, but this is a great place for information, advice and peer opinions.  The first think nearly everyone will tell you is since it’s confirmed that you do have melanoma, you see a melanoma specialist, which not all dermatologists are.  You may want to post your pathology report as well.  I’m assuming you have clear margins, but if not, your next step is a wide excision to make sure all of that tumor is gone.  That will typically be done along with a sentinel node biopsy, which is done by injecting radioactive dye into the lymphnode basin into which your mole drains to see of there is any additional cells that may have traveled from the primary area to your lymphnodes.That’s what happened in my case.  I had two positive modes, staging me at 3A in 2011.  I would ask about both of those procedures.  In my case, after it was determined that my lymph nodes were positive for melan9ma, I was scheduled for a PET scan.  I think if your doctor recommends you have a PET, you would benefit by doing it.  The PET would help identify if there are any additional areas for investigation/follow up.  It’s a good precautionary step.  Next, based on what they determine to be your stage, ask about treatment options and your treatment plan.   Immunological therapies such as Keytruda, Yervoy and a few others separately or in combination have been more effective than past treatment options.  Interferon used to be standard of care for some melanomas (it was for my Stage 3A).  However, the data doesn’t show it has impact one way or the other (recurrence % is virtually the same for those that do or do not have that treatment).  If you are not comfortable with that plan (and I would ask why the recommended therapy is the best option for your particular situation and have the doc explain the other therapies as well) don’t hesitate to seek out a second opinion.

There are people on this board like Bubbles (Celeste) and Janner, both of whom have much more detailed knowledge than me.  Bubbles has a great blog for people diagnosed with melanoma.  She is a long term Stage 4 survivor and an inspiration and cheerleader for this MRF family.  Here is a link.  Loaded with good info in the dozens of entries she has made.    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

Good luck, Savannah!  One other small piece of advice is don’t let the diagnosis overwhelm you.  Get the treatment plan figured out and keep enjoying all the other parts of your life.  

Im certain you’ll hear from the better informed cohort of MRF shortly.

All the best,

 

Stan

Anonymous - (8/7/2018 - 2:20pm)

Well it's not good, really, because in melanoma depth is pretty much everything and you want depth to be <1mm. At 4.6mm and with vascular invasion, you will definitely be recommended a SLNB for staging purposes because of the not insignificant risk that melanoma has already travelled to nearby lymph nodes. Keep in mind a SLNB doesn't do anything for survival of melanoma - it's not a treatment or a cure, it's a staging tool. I'd imagine some imaging would also be provided, CT or PET, I don't know. Look you're kind of mid-diagnosis, you know you have melanoma but not which stage, so what is coming up is likely recommendations for procedures to nail down staging before any treatment is discussed. I hope your SLNB and other scans are clear but with 4.6mm there is that chance of spread.

ed williams - (8/7/2018 - 3:11pm)

Wow, just Wow Anon, what a great job of sugar coating things!!!! Feel free to give your expert opinion while using the anon button, that takes a lot of courage!!! I am glad that my Oncologist didn't have your bed side manners!!!!

KellyH - (8/7/2018 - 8:26pm)

Hi Savannah. 

I have to agree with Ed here...yes, you appreciate the honesty but you are just at the beginning of your journey here...you need a lot more testing and guessing what is good or bad is not helpful and not necessarily accurate information. Go to a melanoma specialist, that’s where you start. Let the doctors walk you through the  process  step  by step and go from there. There are treatments for melanoma...all stages....and there are plenty of stories on here that are from survivors!!!! They will give you the strength to get through the next few months of testing and whatever treatment lies ahead. My son is young, he’s only 17......he was just diagnosed in February with Stage 3a...he is currently undergoing immunotherapy treatments...the doctors feel his prognosis is excellent. There is no reason right now to think you will be any different.  One day at a time and one test at a time. ❤️

Kelly :)

A Melanoma mom ❤️

Savymoo23 - (8/7/2018 - 3:41pm)

I enjoy the honesty. Thank you for the information! 

Savannah Price

AN8 - (8/7/2018 - 5:02pm)

Hey sweetie...you are the same age as my daughter!  So sorry you are having to deal with this at such a young age.  Very impressed on your research and finding a website such as this for information.  I am newly diagnosed as well, therefore, wanted to share some information and support that I have gained in my short 3 month journey.  You can lean on the "veterans" on this site for the heavy lifting questions.

First, I completely agree with Stan - see a melenoma specialist.  I see you mentioned a general surgeon.  I would at least go the surgical oncologist route.  I am not sure where you are from, but try to see if there is a surgical oncologist in your area that deals with melanoma.  If you post your location, people on this very site may be able to point you in a good direction.  In my situation, my surgical dermatologist removed my stage 1b tumor stating no need for follow up with oncologist due to depth of only .44mm.  My anxiety, however, led me to an oncologist (surgical who specializes in melanoma) who stated he would have performed a SLN biopsy regardless of depth because my tumor was "ulcerated".  He did state my derm was not "wrong" in her opinion - 1B with ulceration is a "gray" area when it comes to SLN biopsy.  I still see my derm for skin checks and also see the oncologist as he is checking my lymph nodes via ultrasound every 3 months for a while as a precaution.  For optimal results of the SLN biopsy, it needs to be performed at the same time as the excission so the surgeon can run the dye through the tumor before it is removed.  That is why my follow up is with ultrasounds.

Another peice of advice - googling will make you insane.  While educating yourself which is very important, you can also scare yourself to death... at least I did and mentally checked out for two months.  I am a control freak and this is something I cannot control.  It is what it is and all you can do is prepare to fight what is to come.  Yes your depth is deep, but I have read stories where deep tumors did not progress and .44 tumors (like mine) did!!  You don't know until you know.  Nothing will give you any better peace of mind than full trust in your medical team and little faith that its going to be ok.  That may not be politically correct and I apologize if I offended anyone..but I had to give it up to the good Lord and have some faith to find my peace.  Just my way - everyone has their own path to deal with things.

Concerning PET scans, that will come with further review from an oncologist.  If there are positive nodes, definitely.  If not, but your insurance will pay for it...do what gives you peace of mind.  BE YOUR OWN ADVOCATE.  It may be hard for you at the young age of 22, but speak your mind.  I have been to the derm every 2 weeks and had 31 biopsies in 2 1/2 months.  Is that normal protocal?  No.  But I have a lot of places moles and freckles and needed for my peace of mind a clean slate so to speak and the derm said ok.   My chart is titled "work in progress".  

Again, seek a surgical oncologist with melanoma experience for excission and SLN biopsy if at all possible.  Do not let google drive you crazy.  Be your own advocate.  You have got to have peace of mind to sleep at night and be prepared for whatever may lie down the road.  I do wish you luck and send prayers.  Please let us know how you are doing.

 

 

 

Edwin - (8/8/2018 - 1:59pm)

A  PET scan is sometimes an alternative to sentinel lymph node biopsy.  In August 2014 my skin melanoma was so deep that my dermatologist scheduled a PET scan for me to decide whether I should have sentinel lymph node biopsy.   Since my PET scan did not show any cancer, I went ahead and had SLN biopsy.  If cancer had spread to a distant place, a SLN biopsy would not have been useful.