Facing a dilema need advice

Posted By
Jabujj
8/13/2017 8:01am
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Replies: 17

So as some of you have seen in my original post, my fiance was diagnosed with melanoma...the biopsy revealed,.86 thickness, clark level 4, mitioc rate 1, no regression, no signs of vascular invasion or ulceration or sat mets.

Now, I am facing a dilema. Through my family doctor I have an appointment with a plastic surgeon on aug 24th to do the WLE. This doctor runs a weekly melanoma clinic.

In my haste and before this appointment was scheduled I had found another plastic surgeon who treats melanoma (not specifically) at his private clinic. We have an appointment with him on the 17th. 6 days sooner...

Both are very good doctors from what I have read (none of them are specialist in melanoma but both have experience with it).

My question is: There is only been talk of a WLE..her family doc was not to well versed in melanoma...we would like a Setennial lymph node biopsy because of clark level iv...is this something that would be offered in a clinic setting (as it is not a hospital). Janner said that the node biopsy has to be done at the same time as the WLE so we dont want to show up at the surgery appointment only to not go through with it because the node biopsy cant be performed. I am going to phone on monday but it is so hard to contact people in the know and get stuff answered.

Second q: my fiances family doc mentioned of keeping it with the appt on the 24th because it might make things more streamlined because she knows that dr. In your opinion better is the speed of the local WLE more important right now?

Regardless we want the sentinal node biopsy but dont have an appointment anywhere with an oncologist or in a hospital, is this something that can be done outside of a hospital setting?

Confused.

Thanks

SABKLYN - (8/13/2017 - 9:57am)

Good morning.  Has the currensurgeon specifically said he would not recommend?  If so, why not? If you haven't had this specific discussion, I would do so.  If your surgeon doesn't/can't do this, and his response for doing so is not satisfactory to you, I would get a second opinion.  I had both my wide excision and SLNB done the same time at Emory.  I think if they're going to do a SLNB, The time to do it is during the excision.

Jabujj - (8/13/2017 - 10:44am)

I haven't gotten a chance to talk to the surgeon..only our family doc who knows very little about melanoma. As mentioned, She has an appointment two weeks away with the surgeon to get it cut, but I don't want to wait that long only to show up for the appointment and be told we are not getting the node biopsy done...suggestions? I doubt a surgeon would take a call from me

Bubbles - (8/13/2017 - 11:05am)

Given your fiance's path reports it is unlikely that there would be a positive sentinel node.  However, it is now a basic standard of care measure for most melanoma lesions as is the wide local excision. Technically, the "cut off" for a sentinel node biopsy recommendation is for a lesion of 1mm  in depth (though some institutions recommend it starting at .75mm) or larger.  However, your fiance's lesion is very close to that and if she is young it is even more important.  Other important points....doing the sentinel node biopsy AFTER the WLE is not really an option because you have to inject the tracer material BEFORE the WLE so as to accurately determine the REAL sentinel node.  Ultimately, the SLN is not about curing melanoma.  It is about staging.  Something that is really important in deciding your next steps, even if is just determining recommended follow up mush less actual treatment.  A person with negative nodes and no spread with a superficial melanoma lesion is Stage 1A.  A person with all that and a positive node is likely to be Stage 3A.  That makes a difference and how are you going to know....if you don't do the SNL?

Here is some data you might find informative:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html  

All that being said, complete lymph node dissection of the affected area is an entirely different matter. However, you can cross that bridge as needed.  I am very hopeful that your love's sentinel node will be negative if it is checked.

As to speaking with her doc.  1.  She should call and ask.  2.  If she can't, you can call and ask as long as she gives the office permission to speak with you.  3.  You can simply ask the clinical person (nurse or doc, etc) what the doc's policy is.  4.  You can wait and ask at your appointment and go from there.  It is better to be thorough and sure about what your fiance wants and needs before rushing head long into anything.

I wish you my best.  Celeste

Jabujj - (8/13/2017 - 8:04pm)

Hi Celeste, thank you for your input. "It is unlikely your fiancé would have a positive sentinel node"

http://chaoticallypreciselifeloveandmelanoma.blogspot.ca/2014/04/with-me...

This was attached to your link which suggest otherwise. Especially because she has many of the risk factors:mitiotic rate 1, Clark IV, under 40...

not trying to be a negative nancy but I've never been so scared. I am trying to be there for her, and be her rock but the thought of anything happening to this girl, has sent me in a downward spiral. I am doing everything I can, but news just keeps getting worse....her initial biopsy now looks infected....which means no surgeon will touch it until cleared.

 

Bubbles - (8/13/2017 - 8:19pm)

The data supports my words.  A mitotic rate of 1, is not 0, but it is not high.  There was no ulceration of the initial lesion. That is important.  And, though I think a SLN is important...odds are....it will be negative.  And...even if there is a positive node...even though I more than understand the urgency you feel...doing things right is much more important than doing things rushed.  

The data is clear - your fiance is likely to never deal with melanoma again - ever.  However, you are correct in your concern in that melanoma doesn't play and it is wise to be smart about what you do from the start. 

If you want to do your best for your love, you MUST calm down and be clear.  I don't think you cure cancer with a smile, but an attitude of "the news just keeps getting worse"....when in truth...nothing has changed will not help you and certainly will not help her.  Biopsy sites can look ugly with no infection present. However, if there is an infection....deal with it.  Then....move on to the next step.

If you are planning to be there for this girl for a life-time....that starts today.  Day. By. Day.  You can do this. She can do this.  

I have been dealing with melanoma since 2003.  Even after advancing to Stage IV....I am still here and NED (no evidence of disease).  The odds are that your fiance will not deal with the things I have.  But, if she does...there is still hope.

Breathe. Educate yourself with facts....as you are working to do.  Take things a step at a time.  I wish you well.  c

 

The SLNB would have to be done at a hospital since she would need to go into the nuclear medicine part of the hospital the morning of surgery for the radioactive injection into her biopsy site, that is how they find the first lymph nodes (sentinel ones) that the biopsy site is draining to. After the injection she waits a while for it to drain. Then goes into a cool scanning machine that has a screen where they can see the glowing lymph nodes, sometimes more than 1 light up, the doctor there marks on her body the areas of where they light up and then during surgery the surgeon has a tool they use to then find them when they're inside. 

And yes, the SLNB would be the first part of the surgery, and the WLE would happen after they're done taking out the senintel node(s). 

Most general surgeons have done many SLNB's, as it is also something performed for staging breast cancer (and maybe others, I am not sure). I had a general surgeon do mine, I asked him ahead of time how many of these types of surgeries had he performed, and he couldn't even give me a number because he had done so many of them. It was successful and I was very pleased with my surgery and recovery. 

So, my suggestion would be to find a surgeon at a good hospital near you and make a consultation appointment with them. If you have a hospital close by with a cancer center in it, even better.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

geriakt - (8/13/2017 - 3:19pm)

I have very similar stats as you do. Clark 4. My Doc was a melanoma onc and he said I did not require a SLNB, but I told him if I was on the table on the OR and put under I wanted the SLNB. He said will do. Turns out I had cancer in my nodes. My advice dump both docs and get the SLNB the same time as you get the tumor removed. I was on that table in the OR 2 days after my pre op Dr visit. Why is it taking so long????

Jabujj - (8/13/2017 - 6:59pm)

I don't know....where are you located? 

Did you meet with your surgeon first? And then two days later have the surgery or are you talking about your initial doctor visit?

geriakt - (8/13/2017 - 10:32pm)

I am in central FL. Here is how it went down. I went to my dermatologist and had a biopsy. Had the results in 3 days via my doc calling me directly being told I had melanoma Clark 4 miotic rate 0 or 1. I forgot the depth. He told me to come in that day he called on a Monday. He gave me the name of the surgeon I should see. I called him same day and he saw me the next day Tuesday. I had my CT Scan the next day of my neck. He called me with results the next day. No nodes swollen. I had surgery that week Friday with a SLNB. Results on the SLNB took a week. Positive in the one node removed. Doc set up a PET scan that week. Results the next day in the office. That week I was set up with an MRI of my brain and liver, an ultra sound of my liver and a liver biopsy. I had my all my left side lymph nodes removed 2 weeks after my tumor was removed. I started my Yervoy Opdivo clincal trial 3 weeks after my nodes were removed. 50 weeks 34 chemo treatments. NED 2 years now. 

Just have to say this is not the norm for how fast most appointments go, you got lucky with such speedy care, but definitely not what most of us have experienced.

Don't stress too much about time, it doesn't all have to happen super duper fast, melanoma is not a fast spreading cancer like leukemia or something. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

Janner - (8/13/2017 - 7:39pm)

I wouldn't worry about waiting.  It actually has been studied.  It's considered totally fine to wait.  I think it is more important for you to get things setup how you want even if it takes a couple of weeks longer.  Some sites have long waits and it can take up to several months.

Jabujj - (8/13/2017 - 7:42pm)

But Janner wouldn't a longer wait = more chance for the cancer to get into the blood?

Janner - (8/13/2017 - 11:55pm)

The simple answer is no.  Melanoma is not flakes of cells that blow into the wind.  Cells mutate and grow and grow through vessel walls.  There is a lot involved in getting melanoma cells to take root and grow into a tumor.  Outcomes of people who wait longer versus people who have it done quicker do not differ statistically.  A general wait of several weeks for everything is VERY common.  I think my longest wait was about 3 weeks for one of my primaries, but that was the wait at the institution I was at.  In general, within 3 months is considered medically acceptable.  Don't stress the timing, just get the procedures you want.  I, like Bubbles, think the odds of a positive node are extremely unlikely.  .86mm with the other factors is just not that bad.  (I've seen a lot of people having WLE/SNB in the 16 years I've been on this site so am not saying this to be glib).  But if you want the SNB, get it done and don't stress the timing.

Jabujj - (8/14/2017 - 12:05pm)

Thanks everyone for the info. Contacted both surgeons and their secretaries told me that they are only doing the WLE and not the setinal node check/dye test, which is frusterating...they didnt seem to understand that it has to be done before hand, they just said we can see an oncologist after...i wish Janner was her doc

My advice to you is to get the SNL done at the time of the WLE. I was a .9 bres low with mitotic rate of 1 and a Clark level 4. The chances of a positive lymph node were around 8 percent. I was 42 years old at the time. I had a positive node. Unfortunately someone falls in that low percentage category. I was that unfortunate person. Hopefully, you won't be. I was diagnosed Stage 3B. I'm one year NED.

Nemesis - (8/15/2017 - 1:51pm)

My melanoma was 0.93 mm thick and I was told I have a 9% of it having spread to my nodes. The percentage mirrors the depth of the tumor btw. Didn't give me a Clark's, mitosis 1, no ulceration. I went ahead and got my SNB and it came back clear. I suggest she does the same as well. Good luck!

geriakt - (8/16/2017 - 5:36pm)

I think you need to consider a new surgeon not looking to charge you for 2 surgeries. This is like a mechanic wanting to change the oil in your car but change the oil filter at a later date. Ask yourself a question. If you pass on the SLNB now and further spread should take place at a later date, how could you live with that? Without the SLNB she can not be properly diagnosed.