Questions to Ask During 1st Visit w/pMedical Team?

Posted By
bjeans
2/10/2018 5:07pm
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Replies: 19

Hello -

I found this community last week after a mole was removed from my husband's chest - melanoma. We received lab results yesterday and have read enough this past week to know they're bad. My husband had a full body PET scan yesterday. Next is meeting with a three-doc team this coming week: Dr. Suraj Venna, director of the Inova Melanoma and Skin Cancer Center, plus a surgeon and a medical oncologist.

The dermatologist said if he had melanoma he'd see Dr. Venna, and that another possibility would be Johns Hopkins, which could be worth while for a second opinion, but we feel lucky (?!?) Dr. Venna's center is nearby. 

Of course we're reeling and I'm practicing how-not-to-cry techniques (for certain meetings since listening while blubbering isn't optimal), though this community does give us some hope, so thank you.

Our question right now is what questions to ask the team aside from the obvious, those on lists, etc. We know we shouldn't necessarily rely entirely on our doctors to find appropriate clinical trials; a few contacts and websites culled from here and another site have been saved. 

So here's part of the ugly report:

Malignant melanoma approaching to within .81 mm on closest lateral resection.

Histolic type: superficial spreading type. 

Ulceration: present.

Breslow thickness: approximately 9.3 mm. You read that right.  

Clark's: Level IV but gather that's not used.

Mitoses: 12 per mm squared.

Precursor Nevis: present

Tumor infiltrating lymphocytes: moderate

Regression: indeterminate

Angiolymphatic invasion, perineural invation and satellite nodules all absent.  

Pathological staging (pTNM): pT4b pNX pMX

Comment is that it appears to be arising in association with a Nevis with congenital features. Two pathologists discussed this and agreed with the interpretation.  

Case clinical information: Collision tumor? Malignant melanoma and squamous cell carcinoma?

Husband is 57 years old and in otherwise good health. 

I'll fill out a profile and he'll join too after our meeting; I tend to be the information junky administrator for us so may post more, but he's a big reader and has dived in too. 

Thank you.

Beth

P.S. Go Nats.

 

First post and a typo in the subject: Medical Team, not pMedical team.

TypoBeth

If you are an info junkie try this site that the National Cancer Institute recommends:  www.melanomainternational.org,  try the topic: http://melanomainternational.org/melanoma-facts/pathology

Keep up the good work!

Thank you. I had read the mitosis rate wasn't included in staging but apparently it's really important. And it sure isn't good. I'll dive in to some of the articles. 

The beginning of this journey is the worst. I can sympathize. I remember feeling so lost, with so many options and unknowns. Once you get a plan in place I hope you and your husband will find some peace. PLEASE make sure the surgeon and oncologist are melanoma specialists, meaning that is all they see in their practice. I see that advice given over and over on this forum. I travel from Ky to Texas at least 4X per year to see (who I consider) the best for treatment plan,scans, consults, surgery and biopsy. I stay local for the actual biweekly infusions. If you can find the melanoma primer that Bubbles recently put together for this forum, it will give you information and you can decide what questions to ask from that. It was a pretty recent post...within the last few months. Good luck!!

Thank you, and I located the primer. The center is solely for melanoma and other skin cancer patients, and cancer has to have been diagnosed before they accept you as a patient. So to clarify, you're saying that if the medical and surgical oncologists don't spend 100% of their time on melanoma, and may see patients with other forms of skin cancers, that's an issue? 

From the website: "... the region's only multi-specialty melanoma and cutaneous oncology program." "We provide screening, detection and treatment of melanoma in early and advanced stages. We also treat Merkel cell carcinoma (MCC), advanced non-melanoma skin cancers (squamous and basal cell carcinomas), cutaneous T cell lymphoma (CTCL)."  They partner with a group doing genomics research. 

Thanks so much for weighing in early. We're going with the assumption it's spread, of course. 

(Primer link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melano... )

Hello,  Don't assume it has spread because everyone is different.  My husbands first melanoma was 10.5 mm and his SNB came back negative.  He started out at a 3b stage.  He had it on the back of his head and had 3 more melanomas removed before he advanced to Stage 4.  He was on a clinical trial for 1 year and 4 months and became NED (no evidence of disease) and has remained that way for 5 years and 8 months.  If you would like to read more about his journey then you can read his profile.

I would also like to suggest you take a tape recorder to the meeting so you can listen again if you forget exactly what was said.  We did this and his oncologist didn't mind at all.

Judy loving wife of Gene (Clinical Trial Ipi 10 mg/kg and GMCSF)

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

I just read Gene's story - terrific, though my apologies if that word is inappropriate given everything he - and you - have gone through. My mind naturally goes to the worst case scenario but as my husband has said, just one step at a time (though educating ourselves as much as possible seems prudent). I'll show David Gene's story. Thank you, Judy.

Beth

Hi Beth,

The shocking beginning of this journey is the worst. I think it took about three months for me to get over the sheer panic triggered by my husband's diagnosis. But knowing he was being treated by a melanoma specialist gave me a great deal of assurance. Also, be a discriminating reader. There's a lot of outdated info online and a lot of junk. Celeste's blog is the best. Hang in there, ~ Carol

 

Shock is the word, along with rawness, panic, nightmare, fear and others. Yet your post and others' help surprisingly more than I could have imagined. I assume Celeste's blog is the one that has the primer. I didn't see her name, but we both started reading the primer and I'll dive into the rest soon. Thank you, Carol.

Beth

From my experience, the Drs at Inova are great - have been going there for nearly 3 yrs (when I was first diagnosed).  They have helped me through many hills and valleys - extremely knowledgeable and always answer all my questions.  Given their multi-disciplinary team approach and melanoma specialization , you’ll learn something new from each Dr and they will answer questions you didn’t even realize they had... and work this one step at a time, while providing options dependent on clinical information and overall assessment of your husband. 

Next steps will probably include a wide local excision/sentinel node biopsy.  To assess any spread, they go the PET CT and brain MRI route. You may want to ask them about each of these and rationale on if/when they do these things (I don’t think these are standard to get immediately).

best wishes!

- J.

J, it's so nice to meet another "Inovian," and great to get a thumbs up about their practice. You did my heart good. My husband had a full body PET CT two days ago, presumably ordered after they read the pathology report. We'll meet with the team for the first time this Wednesday. 

Beth

Hi Beth (and husband),

Sorry you have had the need to join this forum, but you will find many well informed and supportive folks here.  I think my primer is helpful for you to start looking at in regard to the lingo and current treatments for melanoma.  However, your most immediate concern will probably be related a wide local excision to clear the area around the melanoma lesion and whether or not to do a sentinel node biopsy.  (I would vote, YES!...given the tumor thickness...0.8 is the conventional cut point.)  Here is my last post on the topic with many links within:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/sln-biopsy-delay-of-40-days-what-plus.html

In a nutshell, to my mind, if one were not to do the sentinel node biopsy...assuming that there are no other lesions in the body or the brain...how would you know if you were Stage III or not?  If you have melanoma in a node you are Stage III and therefore qualify for several adjuvant treatments should you choose to do that. The sentinel node is found by injecting radioactive tracer into the area of the lesion and seeing where it travels to.  The first node (sometimes there is a couple) that lights up along the path is that node.  On the torso it could be the axilla or groin...though if your husband's lesion is on the upper chest, the ax would be most likely.

The next question you would have to think about is:  What to do if there is a positive sentinel node?  Do you wish to have a CLND (complete lymph node dissection of the area with the positive node)?  There are pros and cons to this.  There is a great deal of discussion about this in the link I gave you.

Once all that is determined...you would need to decide upon a follow-up plan if all nodes and body are negative.  OR...need to figure out what steps you want to take re: CLND and adjuvant treatment if there is a positive node.  OR...treatment period if there is tumor in other areas (which is unlikely at this juncture).

I hope this helps.  Melanoma sucks.  But...melanoma peeps are awesome.  Hang in there.  Ask additional questions as you need.  I wish you both my best.  Celeste

Celeste, your post allows us to drill down to some of what we will face right now, which is a welcome relief from the head spinning amount of information about everything we're trying to digest, some which won't apply. 

After receiving the pathology report, the dermatologist who initially saw the mole explained the tracer. I can't imagine *not* having the biopsy down. The decision about a CLND will be explored. As my husband has said, one step at a time. And I'd add, yes, but running steps, not leisurely ones. I assume the PET CT will give more info too.

Question: You said a tumor in other areas is unlikely at this juncture. That's a welcome thought, but why would it be unlikely, given the pathology report, Breslow thickness (9.3), mitosis (12 per mm squared) and other aspects. 

David and I are so grateful for your post and linked blog entry, including the comments following it. Awesome peeps indeed. 

Beth

Deep doesn't always mean spread.  A good friend of mine had one 8+mm deep with involved margins and more found in her WLE.  She had ONE lymph node positive - stage 3a.  She did the CLND and no treatment and has had no spread for about 8 years now.  Don't assume anything!

Excellent point, deal. And we'll know more soon. 

Janner is correct.  It is unlikely (though not impossible by any means) that, despite a thick primary NOT ulcerated lesion (that is super good) PRIMARY (ie : first) cutaneous lesion to have any simultaneous metastasis beyond a possible positive node.  That is just a fact.  The data shows that while there may be progression later....on finding a cutaneous primary...spread beyond the nodes at that moment is unlikely.  Deciding what to do IF you find a positive sentinel node will be your next step....if you in fact have the SNLB done.  Or...deciding what type of monitoring will be done if you have a negative SNLB.

Those are just the facts.  c

There was ulceration, however. 

We're in agreement that a SNLB should be done, even more so having read the info you linked me to. We meet with the director, medical oncologist and surgical oncologist tomorrow. 

 

 

No edit button on this forum? Didn't mean to hit post. Our assumption that it has likely spread was based on thickness, mitosis and ulceration. (Pathology is in first post.) Is there still a chance it has not? There's always hope, but those factors tamped it down.

Sorry.  Missed the part where it noted ulceration was present.  But....YES!  The odds are that you do not have distant mets at this point.  Fingers crossed that is what you will be told.  c