Newly diagnosed hubby, likely 3c...any advice?

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4/11/2011 11:57pm
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Replies: 11

Hello all,

My husband's issues with melanoma started in about May 09. He is fair skinned with many irregular freckles. We noticed a new freckle on his right shoulder and that it appeared one corner of it was starting to get slightly darker than the rest. As a precaution, he went right away to his PCP. His PCP said not to fool around and sent him right to a surgeon. Surgeon thought it was nothing but did the biopsy anyway: the darkening corner was in situ melanoma. Early June 09, he had the lesion and surrounding area removed. Biopsy of the removed material showed no other signs of abnormality or melanoma. After the surgery and test results, the surgeon said he should be all set, but that he should see a dermatologist every 6 months to keep an eye out for anything new. It was not recommended he see an oncologist because of how early they caught the melanoma and because there was none found in the biopsy. Hubby has gone to see the dermatologist as recommended and followed up with him on a regular basis. To date, no new lesions had been found, nor any issues with original site. My husband has been basically healthy ever since.

 

About a month and a half ago, my husband thought he had pulled a muscle in his right shoulder lifting some heavy equipment. A week later, he had a sore, tender slightly swollen spot under his arm. Another trip to the PCP, who thought it possibly a hematoma. He was sent to an orthopedist to see if he might need PT. The orthopedic Dr. was unsure if the swollen area was a hematoma or not, so he sent hubby for an ultrasound. From that, we learned that whatever was going on was happening in his lymph nodes. In the meantime, the area continued to swell and cause discomfort. It was NOT hard; it was soft and squishy. Pain and swelling continued, so hubby went back to PCP again on Mar 28th. He sent him to a surgeon for a possible biopsy. The surgeon was the one who thought it was likely cancer, even though the lump was soft and tender instead of hard and painless. Just in case it was some kind of infection, we had his PCP test for infections (including cat scratch) and give him some antibiotics. On the 30th, he had a CT scan for his whole torso. It came back basically clean (a little fatty liver, that's it) except for the masses seen under the right armpit. Meanwhile, cat scratch test came back negative. He had a biopsy done on April 1st. They were to remove the enlarged lymph node and take a sample right there to determine if it was cancer and would remove more if they found it was. The lymph node that had swollen was necrotic (likely why it was painful) and roughly the size of a racquetball and found to be consistent with metastatic melanoma. They removed several other matted lymph nodes as well. We have not gotten the results of the full panel back yet, but the preliminary report said that 11/18 of the nodes tested positive for melanoma. The next day, he had an MRI of his brain and liver with clean results.

His doctors were shocked. His dermatologist made a personal phone call to him when he heard we were requesting records for an oncologist. He showed no signs of any problems when the doc had seen him just a couple months ago...

This past Thursday, he had a PET scan. We have an appointment with a local oncologist tomorrow, where I expect we'll get a staging and the results of this test. My husband and I are feeling pretty overwhelmed and shell-shocked over the news and have hardly had time to wrap our heads around it. Our PCP's office recommended we get a 2nd opinion at Dana Farber (as we are relatively local to them), so we have an appointment with Dr. Ibrahim at DF's Melanoma Center on Friday. I had considered getting an opinion at Mass General's Melanoma center as well because their office is more easily located (for us) in Boston as well as having a satellite office not far from where I work.

Can anyone share, well, anything about anything with us? What kind of questions should we be asking these doctors? What would be good to know? What should we expect for his 1st oncology visits? How soon should we expect his treatment regimen to start? Will he need to take a leave of absence? Has anyone had any experience with Dana Farber or Mass General's Melanoma centers?

I sincerely appreciate any and all feedback anyone can give us newbies.

Thanks!

Michelle

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

I'm so sorry you've had to join our group. It is extremly rare when in-situ's cause any issues after removal, but now you can't look back, you have to deal with it.  It does sound like your husband has really tried to be on top of this. 

You are in a prime area for great melanoma specialists as well as trials.  Both Dana Farber and Mass General have really good reputations with melanoma. I would tend to doubt that you would find a specialist in a satellite hospital but you can check. 

You might want to ask the oncologist about B-raf testing on one of the nodes that was removed. Also ask about hla testing.  When you see the specialist he/she will give you your options.  Many oncologists only tell you the options that are located in their hospital and unfortunately some only give trials that they are participating in. Make sure to ask what else is available in your area. 

When you get your options please post and people can give their experiences.  We are not Doctors but many can be there to let you know our experiences and questions to ask.  Also, you'll never feel alone.

If you haven't posted a profile yet please do. That way everytime you post you won't have to give all of the details again.

Linda

Stage IV since 06 stable

I'm sorry you've had to join the group as well. This is a great support network and the best place to be to seek advice and answers.

I'm also a Stage 3c. Stage 3c really comes down to the level of cancer in the nodes (micro or macro) - mine was macro. Since your husband has melanoma in his lymph nodes, he should likely be prepped for surgery to have them removed (and I wouldn't wait on this).  Your options after that would likley be radiation, adjuvent therapy and/or clinical trials.

Linda is right, once you have your options given to you by your oncologist, we're all here for support, guidance and help you through the best we can given our experiences.  Testing for B-raf is important -  if you should work your way into Stage 4, it's been proven quite successful - sucks for me that I was negative.:(

There are many new and wonderful treatments for melanoma in clinical trials, so we can all only hope that the cure is soon on it's way.

Best of luck to you and your husband.

Lisa

Stage 3c

Many impossible things have been accomplished for those who refuse to quit

Michelle,

To add to the growing list, sorry you found your life and your husband's at this place and you're on this board, but because your life is where it is, I am glad you found your way here to this board.  Make sense?

I notice you mention you're going to a cancer clinic Friday, but I don't see anywhere where you mention melanoma specialists other than the ones you will be seeing at the clinic, so I'll add to what you've been told: it is vital that everyone your husband sees from this point forward is a melanoma specialist!  That includes his dermatologist, oncologist, and surgeon, even if it means getting new ones.  Check into who's at the clinic you'll be going to.  I expect their oncologists and surgeons to be specialists, they probably also have derm spec on site in case you need to switch.  I know at Duke Morris Cancer Clinic, where I go, everyone in that clinic is a melanoma specialist to some degree, even derms.

I know you're shell-shocked and overwhelmed. Deal with that and try to move beyond it. 

As for questions you need to ask, there are folks on this board who are great at giving you the technical questions you need answers to. I'm going to add to whatever they say by telling you to ask anything you feel you need an answer to. Don't stop yourself with a "that's stupid, I can't ask that." You ask what you need to ask and don't leave until you feel like you have the info you need to make the decisions you've got to make.  That's another thing about specialists, they take the time you need and they want you to ask.  That's what you're paying them for, AND it's how they get the great reps they've got.

Also, since you're the spouse/care-giver, make sure you go in every room your husband goes into!  You need to hear everything he hears!

All the best.

Carol    3b

Hi

Your husbands story and mine are somewhat similar.  I also had a freckle that changed(but on my ankle) and had it removed and did the follow up check ups every 6 months with dermatologist and was told " I was lucky" they caught it early.  4 years later I had a lump in my groin and dermatologist was shocked it had spread, as it "wasnt supposed to".  I went to Mass General to see Dr Lawrence - melanoma specialists and then second opinion Dr Hodi Dana Farber - other melanoma specialist.  I liked them both but found Dr Lawrence was a better fit for us.  I had surgery, radiation(due to extracapsular spread they wanted to radiate the area), high dose interferon then low dose.  (Both Dr Hodi and Dr Lawrence seemed tenative about interferon saying how it can beat you up but both thought high dose was worth it and my decision whether to continue with low dose).

I know there maybe other options for stage 3 now - my tumor was found in 09.  This is a wonderful board and if you let everyone know information as you find it out - they can help you by explaining and giving you their thoughts. 

I am currently NED 2 years now. 

keep us posted, take care it is very very overwhelming in the beginning.

laurie from maine

Michelle      I know that everything can get overwhelming and scary with a melanoma diagnosis and worrying about the next step.   Just know that you are not alone and this Board is full of concerned, supportive, and helpful people.  My husband was diagnosed last year (1/10) and is almost done (one month left) with his year of interferon.  He sees Dr Hodi and Dr Russell at Dana Farber, and they are wonderful and have a great team with a caring nurse and PA.  When I have any questions, I e-mail his nurse or PA and get a reply within an hour or two.  Thats important to me, since we live three hours from Boston, I like to be able to stay in touch via e-mail and have such quick responses.  Although, we have a local doctor, who monitors the interferon, all my husband's tests (MRI,CAT, PET scans) are done at Dana Farber and reviewed by Dr Hodi and Dr Russell.  We feel confident with this monitoring by Dana Farber and hope and pray for the best, right now my husband is doing very well.  Dr Hodi stated that interferon is a personal choice/decision, and you need to weigh the amount the side effects can alter your life.  We decided to give the interferon a try, and my husband has done very well thru the whole year.  Everyone is so different and their reactions so varied, you just need to get educated, to make the decisions that are best for you and your husband, and to look forward.  God Bless!!  Valerie (Phil's Wife)

Thank you everyone for your replies!

We went for our first Oncology appointment this afternoon (albeit with a local oncologist, not a specialist). We kept the appointment, even though we go to Dana Farber on Friday mainly to get the PET scan results and hear what they had to say about staging and treatment options. 

According to the PET scan report, the test revealed another infected lymph node further into hubby's right shoulder. She said that it was "too deep to be removed surgically". (Does that make sense to anyone here?) However, there was also a suspicious area on the left side of his windpipe just above the thyroid gland. They said there was no mass or tumor, but the area was glowing, so they wanted to do more testing on it (the radiologist that read the scan called it probable for  metastatic melanoma).

Obviously, this would change hubby's staging to Stage IV and the treatment options would change. She said radiation would not be possible if he was Stage IV and basically said that other than medical trials (which they don't participate in any), there would only be the option of chemo/immunotherapy and they only use 3 different drugs for that. (I didn't even ask which drugs because by this time I KNEW we weren't going to be treated there)

However, we did allow them to schedule Don (hubby) for a CT scan of his neck. Figured Dana Farber would want to do that anyway, so we might as well get things moving quicker. 

Even though we are looking at a possible Stage IV diagnosis, today I am feeling relatively hopeful. They did not find any disease on any of his major organs. He is a healthy man who has excercised regularly and eaten well. I see and read stories on this site that were much more dire than what we are looking at currently and you all are still here, encouraging others, and I know that there is hope. 

This afternoon, before we went to the appointment, I took the time to read all your responses to Don and he said, "So that means there's still hope then?" I believe it really did help for him to hear from you and knows that people are fighting the same disease...and winning. 

One of you asked if all our doctors were melanoma specialists; my answer is not yet. I know that the DF Melanoma Center does have its own dermatologist and surgeon, so I would assume they would be part of our treatment team once we get started there. 

I will make sure to ask about BRAF and ldh tests on Friday (I asked today, but didn't get satisfactory answers). Does anyone know anything about Dr. Nageatte Ibrahim? She is listed under Dr. Hodi on the staff listing for the Melanoma Center. Perhaps she is new?

Gonna stand my ground, won't get turned around,
And I'll keep this world from draggin' me down;
Gonna stand my ground and I won't back down.
~Tom Petty

Yea!  You and hubby made it through!  I may be wrong on this, and there are definitely those on here I'd defer to if they tell you differently, but you may want to take what you were told today with a grain of salt and wait until Friday and see what the specialists say.  That's why they're specialists and why that's who you want to see.

You've read on here to learn that non-specialists can say things and offer advice that's plain wrong!  Friday isn't that far away.  Also, DF may well want to do any future tests and scans themselves.  If they do, they'll move quickly, you won't need to try to get a jump on them.

Tell Don (and yourself), there is definitely hope!  Where there is life there is always hope so don't give up.  Ever.  You hang in there and I'll refer you to the Melanoma Prayer Center on facebook that I recently started.  I write and administrate it.  You don't have to be on fb to read what's posted and I'd love suggestions for what you need.

http://www.facebook.com/MelanomaPrayerCenter

Grace and peace,

Carol

Yes, no offense to the oncologist we met with today, but I was less than impressed. We are already taking things with a grain of salt until Friday. As for the CT scan, the doctor is aware we're going to Dana Farber on Friday, so she said it was fine if we needed to cancel the CT they schedule. 

Gonna stand my ground, won't get turned around,
And I'll keep this world from draggin' me down;
Gonna stand my ground and I won't back down.
~Tom Petty

When I was first diagnosed, I had a PET scan done here with a local oncologist. Who knows what was going on, but it was full of false positives (didn't know it at the time). At that point we asked to be referred to Dana Farber. Before starting treatment, they wanted to be sure of what they were seeing (obviously) and I ended up having all scans and biopsies repeated at DF. It was extremely stressful. Now, although I am monitored by a different local oncologist for the leukine treatment, I have all regular scans, tests and dermatology appointments at DF. I completely trust my team at DF (Friedlander at first and now Hodi).

Thinking of you both in this stressful time,

Gwen in Maine, IIIc

Yea!  You and hubby made it through!  I may be wrong on this, and there are definitely those on here I'd defer to if they tell you differently, but you may want to take what you were told today with a grain of salt and wait until Friday and see what the specialists say.  That's why they're specialists and why that's who you want to see.

You've read on here to learn that non-specialists can say things and offer advice that's plain wrong!  Friday isn't that far away.  Also, DF may well want to do any future tests and scans themselves.  If they do, they'll move quickly, you won't need to try to get a jump on them.

Tell Don (and yourself), there is definitely hope!  Where there is life there is always hope so don't give up.  Ever.  You hang in there and I'll refer you to the Melanoma Prayer Center on facebook that I recently started.  I write and administrate it.  You don't have to be on fb to read what's posted and I'd love suggestions for what you need.

http://www.facebook.com/MelanomaPrayerCenter

Grace and peace,

Carol

Michelle       I think that Dr Ibrahim is fairly new on the melanoma team at Dana Farber and it is my understanding that she has recently replaced Dr Friedlander.  I also understand that Dr Hodi and Dr Ibrahim share the same nurse and PA and as I have indicated in my past post, I find the supportive staff at the Dana Farber melanoma department to be excellent.  Please know that all your fears,doubts,worries are so normal and take a day at a time.  My husband was diagnosed with a rare and aggressive form of melanoma (Muscosal) and I was a wreck last year at this time, thinking the worst.  He is currently NED (no evidence of disease)  and has done very well in the 15 months since his original surgery.  Good luck at Dana Farber on Friday and keep us posted.  Valerie (Phil's Wife)