Fiance diagnosed with melanoma...sad with questions

Posted By
Jabujj
8/11/2017 1:42am
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Replies: 15

Hi everyone,
Its been 4 days since my fiances diagnosis and I havnt been able to sleep. Her report indicated:
.86 breslow, clark level 4, 1 mitotic rate, no ulceration, no regression, and no satellite mets

I was under the impression that generally anything under 1 breslow has a better prognosis and that they dont use the clark scale anymore...but after reading this study it strongly implies that clark does not matter in most cases, except with clark level iv because it is a special subset...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1250844/

why did they get rid of clark when it details how deep the cancer is and closer to the bloodstream, hence a better chance of spreading. The doctors addressing my fiances case are not rushing it because they are going strictly off of breslows thickness...

So tired and worried...

Sorry to hear you and your fiance are dealing with the stress of diagnosis. It is quite frightening to be thrown into the whirlwind. This link provides a guide to staging as the joint commission has deemed most reliable since 2010... it also explains the reasoning for pushing aside Clark's Level: http://www.skincancer.org/skin-cancer-information/melanoma/the-stages-of-melanoma/guide-to-staging-melanoma  

From what you've posted of her report, there seems to be only small concern.... provided their margins were complete and clear. Was this the initial pathology report, or was this what came back from a wide margin excision? The other question I would have, is whether or not the docs checked a sentinal lymph node. Although with a thickness of less than 1mm, most places would not consider checking the nodes, it may be something to discuss further with her doctor. The difference between what appears to be a Stage I and a progressing Stage III is determined by lymph node involvement. I often question how the determination was made that folks who are T1a are simply "opted out" of sentinal node checks. It might come down to odds of recurrance, but with such an exceptionally difficult thing to track accurately, I'm thinking it's more of an "insurance companies don't want to pay for it" decision... AKA "Standard of care". 

Thank you for your response Niki. This was the intiial punch biospy...in my tiredness last night i forgot that it said on the biospy " Melanoma extends to lateral border at situ"... which I take it means there is more melanoma on the surface of the site...is that correct? Its so hard to get any answers as I felt I was more informed about than the general practicioner....and in Canada it is a long wait to see a specialist who does have some answers.

It does sound as if the borders still contained the shallow beginnings of melanotic mutation. Her next move is wide excision. I'm not certain how Canada handles the decision of sentinal node biopsy or not. Hopefully one of the Canadian melahomies with early treatment experience will chime in. The long waits are the most crushingly painful part. That not knowing what to do, or what might be coming next, is a tough mental obstacle... try to hang in there. : )  The process seems to be all baby steps... baby turtle steps... very slow moving. ha! It's good that you are arming yourself with info and questions for the doctors. Inquisitive minds get physicians out of their "status quo" line of thought.

Thanks for the comments Niki. Godbless to you and yours.

Hello - Just wondering where you are located (we're in Ontario). With a bit more info, maybe we can put to rest some of those fears, though Niki's response is "right on the money" - chances are there's little to worry about. But can you tell us please if she's even been referred to an oncologist or is she being handled between her GP and a dermatologist?

Barb

Clark's level has meaning if it is accurate. Unfortunately, the reason it really was removed is that it is somewhat subjective.  There are no clear cut levels except between the epidermis and dermis so the rest was just not as reliable for staging.  Breslow depth became a better prognostic indicator.  The other staging criteria follows after that.  I had a very similar lesion diagnosed in 2001.  .88mm, 1 mitosis, no ulceration.  Still here, no spread 16 years later.  That was my 3rd primary, I had two previous ones.

You've been given some great advice on here - the only thing I will add is.... it looks like the article you referenced is from 1985.  Things have changed dramticially and there is a lot of older scary data out there.   Try to get the most current information that you can - great progress is being made.    Hopefully other people from Canada can give you advise about moving the process along.  The waiting is the hardest part.     Best of luck to you and your fiance.         

Thank you for all the replies. No one ever thinks that they are going to be in this position until it happens to you, then it is a total shock. The waiting is the hardest part, you want all the test and everything done instantly but it takes a while, especially in Canada.

To Barb, we are located in Oshawa Ontario. so far we have appointments with a surgeon three weeks away and a derm 2 months away.

To Janner, did you end up getting a SNB done after your removal?

Thanks everyone.

 

No SNB here.  The criteria at my institution was 1mm and I had no other negative factors.  So I didn't have one.  SNB needs to be done prior to the wide excision (or same setting).  It's not useful if it is done afterwards.

Just curious why is it not useful if it is done afterwards?

Because the lymphatic drainage path modifies due to the excision and they may not be able to find the right sentinel node.

OK, GTA is good! And the three weeks until she sees the surgeon is about the norm here. At that point (I'm assuming they're doing the WLE then and perhaps an SLNB) if the surgeon has any more cause for concern, your fiance will definitely NOT be waiting 2 months before she sees an oncologist - once you're in the treatment process here, things happen very quickly and our system is just as efficient as other countries, incl. US. (there are things that tick me off but that's a whole other rant :) But let's hope she doesn't ever have to learn these things first-hand!!

Even though she is not yet properly staged, it does sound as if they are treating her as a stage 1 with a dermatologist follow-up to surgery. If that is the case, vigilant self examination will be her best line of defence in the future and she should be able to get in to see her derm quickly if she ever has any concerns!!

Wishing both of you the best possible news and outcome!!

Barb

Hey guys again sorry...cant sleep had one more q.

There is a chance that the cancer might only be confined to the borders of the mole removed. However, the gp who did the mole removal via punch biopsy did not get all of the mole, as there are outlines of some of the mole still ontop of the skin. I am worried that in the healing process of the punch biospy the borders of this mole are now open and worried about spreading...does this make sense?

It's tough I know but try not to worry so much! The whole focus of her upcoming WLE is to get the clear margins, meaning, they will leave nothing behind.  :)

Barb

Hello there. I am in almost the same position as your fiance, except that my Breslow level is lower and I am a Clarks level 3. I live in London and I will be having my surgery next Wed. August 23rd. The margins of my biopsy are positive as well and I have all of the same questions - e.g how much more melanoma is in there, if any. A diagnosis of this kind can be very isolating and I have been going to Wellspring - the Cancer Support Centre here in London. I would recommend Hearth Place in Oshawa which is the cancer support centre there. They have wonderful services for patients and caregivers to help get you through this journey. I waited about 35 days from my biopsy until my surgery by a Plastic Surgeon, which is within the paramaters for melanoma surgery for thr province. As to the mole still being present, a large part of mine is still there as the biopsy was a very small speciman. That will be taken care of by the wide excision. There is wonderful support here as well as on the CancerConnect forum through the Canadian Cancer Society. Keep posting and talking. Best thoughts to you and your fiance. By the way, Oshawa has an excellent Cancer Care Centre at Lakeridge. Health.