Wife newly diagnosed

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3/20/2014 7:49pm
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Replies: 12

Hello all,

My wife was just recently diagnosed with Melanoma.  She went to our GP back in late January for what we thought was a routine removal of two or three moles and ended up with one testing positive for melanoma.  The one that tested positive had grown significantly, and had started to itch.  We went to a surgeon to have the WLE and sentinel lymph node removal and biopsy.  The good news was that the margins on the WLE came back clear, but the lymph node tested positive.  We met with a surgical oncologist last week, and he recommended that the rest of the "upper level" lymph nodes be removed and biopsied.  A second oncologist that we met with today, who would be the one to provide the 'after surgery' treatment also recommended the same operation, so she's getting herself ready mentally for that.  We go back to the surgical oncologist on Tuesday to set up a time for the surgery, as well as talk about recovery time, etc.  The second oncologist has recommended that she have the high dosage interferon treatment once she is recovered from the lymph node surgery.  Everything is happening so fast that it's hard to wrap my head around it.

I have not done a whole lot of reading on interferon, so I'm not sure where to even begin asking questions...

 

David

casagrayson - (3/20/2014 - 8:29pm)

I'm not an expert in these waters, but I will tell you what I've learned from this site.  If your wife is not being seen by a melanoma specialist (preferably at a Melanoma Center for Excellence), that needs to be at the top of your priority list.  Treatments for melanoma are changing at a very dramatic rate (thank goodness) and only the doctors that specialize in melanoma will be able to stay on top of the new treatments. 

Do you have any more information from the pathology report?  Depth of primary, mitosis rate, Clark level?  Where was the original mole located on the body? 

I know you feel overwhelmed.  Don't panic, and ask any questions you might have here.  (Don't spend too much time web surfing.  Statistics are outdated, and they will just cause you more anxiety.)

Strength and Courage,

Susan

tschmith - (3/20/2014 - 8:36pm)

I agree...try not to look at the old statistics.  I made that mistake and made myself a little crazy!  And please do find a Melanoma specialist (maybe you already have one)...makes all the difference because they're up on the latest therapies.  

Terrie

Leslie'sHusband - (3/20/2014 - 9:08pm)

I can't put my hands on the reports right now, not sure where Les put them, but the primary was 1.0mm thick, not ulcerated.  It was on her left upper thigh, and the lymph nodes that they are going after are in the groin.  I'll get the paperwork and post back.

Momrn5 - (3/20/2014 - 9:52pm)

Hi. Thought I would answer since mine was in the same place.  It was breslow 1.8.  Non ulcerated. I had a small amount of cancer cells in the sentinal node. One to two percent of the surface area. I did also have the surface nodes or inguinal nodes removed on that side.  No other of the 11 nodes taken had any cancer cells in them.  I was in observation in the hospital overnight and went home with 2 Jackson Pratt drains. They stayed in for two weeks.  And I needed to take 4 weeks off from work since I travel a lot. After much research,  I elected not to take the interferon since only about 5%  of people get any benefit from it.   I am currently doing nothing else but wait and watch for stage 3a.  I did have brain MRI, chest and pelvic ct scans with contrast.  They are watching a couple of areas.  Sorry you had to join the club.  But lots of good treatments out there now to try if it spreads.  Best wishes.

Patina - (3/21/2014 - 3:06am)

Hi David,

My Mom was diagnosed last year at stage IV. Like the others I recommend that you find a melanoma specialist, it makes a real difference because treatment is changing rapidly and if they don't specialize in melanoma they may not be fully aware of options....

I also recommend keeping copies of all reports, images...and making an appointment for a second opinion. We had 3 and found out during the 3rd that a radiologist MISSED brain cancer. Needless to say, that is a big mistake and the only doctor to catch it was the one who saw the images. The other two melanoma specialists didn't look. They read the report.

You did not mention where you are and if she is BRAF + or not (you need to know that, it gives her options others don't have). Other's here could make recommendations for oncologists too, but here are mine:
Dr. Peter Bosaberg, Santa Monica, CA. - Melanoma Specialist & Researcher at a Melanoma Center of Excellence.
Dr. Michael Wong, Los Angeles, CA. - Melanoma Specialist & Researcher at USC Norris Cancer Center.

Both are awesome.

kpcollins31 - (3/21/2014 - 2:30pm)

I would highly advise against interferon - while it may be an FDA-approved treatment, success rates are very low and the side effects can be tough. I recommend getting in touch with a melanoma specialist to review more current treatment options, such as clinical trials.

For me personally, even though I have recently progressed to stage 4, I have not pursued any treatment options other than surgery to remove recurrence. These can be complicated and personal decisions. Wishing you and your wife the best.

Kevin 

Kelly Smith - (3/21/2014 - 8:00pm)

Hi,

I hate that you have had to be introduced to the club, but these amazing people have been so great to me. I was diagnosed at 31 weeks pregnant with stage 1b, then I had a sentinel lymph node biopsy at 34 weeks pregnant, where we also found out that one node out of 2 tested positive (micro-mets). I had my baby last week at 38 weeks. I just had my PET/CT scan today, and as long as that is clear, I will have the second surgery in about a week. Interferon is also possibly in my future. I know exactly what you are going through. Or what your wife is going through. I am awaiting results from the scans right now, so I am nervous. But I can tell you that that the anxiety does get better. Remember, take it one day at a time. I know that so many are most likely telling you that, and it doesn't make much sense right now. But it WILL. It will help you SO much. You will be ok. Your wife will be ok. Breathe. Hugs and love to you all...

Leslie'sHusband - (3/21/2014 - 10:26pm)

Thank you all for the responses, we really appreciate it.  Thinking back about our meeting with the oncologist yesterday, I really didn't get that 'warm fuzzy'.  My gut said 'go somewhere else'.  I have been in contact with Duke Cancer Institute to get Les an appointment to see one of their Melanoma specialists.  I'll be calling back on Monday morning to get things going.  We are in Southeast Virginia, so they are only a couple of hours away.  Duke currently has 13 clinical trials going for Melanoma, two of which interested me.  One is a "Feasibility and Safety of Minimally Invasive Inguinal Lymph Node Dissection in Patients with Melanoma".  That one sounds interesting, especially since Les has not had the second lymph node surgery yet.  The other is a comparison between IPI and interferon for resected high risk melanoma.  I am planning on taking this information with me when we go back to the local surgical oncologist. 

Looking over her paperwork from the second surgery:

Diagnosis:

A. Melanoma site, Left thigh, wide excision:

 - Cutaneous biopsy site changes within central area of skin excision.

 - No Melanocytic Atypia nor Melanoma are identified.

 - Margins are clear.

B. Left inguinal sentinel lymph node, biopsy:

 - Positive for Metastatic Melanoma, involving one lymph node. (+1/1)

 - Immunohistochemical stains (Block B1):

 - S100: Positive for isolated melanoma cells

 - Panmelanoma: Positive for isolated melanoma cells. (see comment)

Comment:

No residual melanoma is found within the left thigh skin re-excision specimen.  The left inguinal sentinel lymph node is negative by routine H&E stains, however immunostains are positive for small numbers of melanoma cells within the subcapsular sinus of the lymph node, making this a clinically occult metastasis.

See prior pathology report of left thigh skin biopsy showing superficial spreading malignant melanoma (size 0.8 cm; thickness 1mm, no ulceration, no mitoses) for correlation.

Updated Pathologic tumor staging:

- Primary Tumor (Melanoma): pT1a

- Regional Lymph nodes: pN1a (Clinically occult metastasis (micrometastasis)

- Distant metastasis: Not Applicable

 

POW - (3/21/2014 - 11:21pm)

Actually, your wife is not considered to have a "high risk of recurrence". Her primary lesion is thin (<1.0mm), 0 mitotic index and no ulceration. Her primary tumor stage (pT1a) is as low as you can get barring melanoma in situ (which some oncologists don't think is really invasive at all). Yes, having micromets in one lymph node clouds the picture, but she is not high risk. Some people, when they are first diagnosed, have a breslow depth of 5 mm or greater or a mitotic index of 10 or greater and so on. Those are definitely "high risk" cases. 

I think that the wisest approach to take for a low-risk Stage III is different from the approach for a high risk Stage III. "Watch and wait" might be a valid option for her. Or, there is now a clilnical trial going on comparing frequent scanning of lymph nodes with ultrasound versus complete lymphectomy. That might be a good option. Or perhaps the clinical trials you mentioned.

It's good that you're going to Duke for a second opinion. I suspect that you and your wife will be vastly reassured by what you learn there. Things are not as bad as you fear they are. After you consult with them and hear their recommendations, you and your wife will have to decide which treatment option she is most comfortable with. Some prefer a more low-key approach, some a more aggressive approach. Just try not to panic. Statistically, the chances are very good that your wife will never see melanoma again.

 

Leslie'sHusband - (3/22/2014 - 8:18am)

POW,

I was getting the "high risk" part from the conversation with the second oncologist.  Yet another reason for my gut feeling to move on to another place, maybe.  I can say that I, at least, felt a great sense of relief when I found out that Duke accepts our insurance, and that treatment there will be considered 'in network'.  The times that I have ignored that gut feeling have cost me, sometimes dearly.  Anyway, we have another appointment with the local surgical oncologist on Tuesday.  I'm hoping to have an appointment set with Duke by then.  I don't think Les will want to set a surgery date until after we talk to Duke. 

Thank you for your reply.

Brent Morris - (3/22/2014 - 2:04pm)

Dear Leslie's Husband,

          I share with you the story of my wife, Les, who had a thin melanoma and a positive micrometastic sentinal node 11 years ago. We did decided to do a completion lymphadenectomy which was negative. Your Leslie (like my wife was) is at least Stage 3a pending further evaluation. If you look at the survival curves for Stage 3a  http://jco.ascopubs.org/content/27/36/6199/F1.large.jpg  the 10 year survival is 70%. So the odds are in your favor. On the other hand, the death rate of 30% is not insignificant. Not "low risk" in our book. However, at that time the only treatment available for Les was interferon which is not effective and has horrible sometimes permanent side effects. We chose to do observation. At year 7 Les had brain and lung mets followed by tonsillar mets. She became Stage 4. Now, after ANTI-PD1 (Nivo) in a clinical, trial she is 40 months NED. So, for Leslie, at this point, observation is a reasonable option but you have to look at the odds realistically. The treatments available for melanoma have changed. There some effective ones on the market and there are clinical trials with other agents that maybe effective. That may influence your decision.

It is clear now that a completion lymphadenectomy in this circumstance does improve the chance of survival.http://www.nejm.org/doi/full/10.1056/NEJMoa1310460 . Doing a completion lymphadenectomy is not a light decision and there is some controversy about it. Here is a link to a discussion of the pros and cons.http://www.ascopost.com/issues/may-1,-2013/does-every-melanoma-patient-with-a-positive-sentinel-node-need-more-lymph-nodes-removed.aspx.

These are not easy times. Check out Les' blog at http://chaoticallypreciselifeloveandmelanoma.blogspot.com/ for more melanoma information and how she has dealt with the whole thing.   Good Luck.

 

BMorris

Leslie'sHusband - (3/26/2014 - 12:06pm)

Brent,

Thank you very much for the links.  I've delayed responding since I have been reading your wife's blog.  I'm only up to mid-2011, and it looks like you guys have been through a lot.  What I have read so far has been a great help.  I appreciate her putting her life online for others to see.

We had a follow-up consult with the local surgical oncologist yesterday, and now have an appointment at Duke with Dr. Tyler on Monday.

Thank you,

David