MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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John Bruno 2613's picture
Replies 8
Last reply 12/25/2016 - 6:44am
I KNOW THIS IS A LOT BUT IT MEANS A LOT TO ME!!!!!!!!! 
 
My brother recently had a Melanoma on his back removed. It had a Breslow level of 0.45mm. An anatomic Clark level of III, and no ulceration was identified. Peripheral margins uninvolved by invasive melanoma. Distance of invasic melanoma from closest periphral margin: 1.4mm. Peripheral margins uninvolved by melanoma in situ. Distance of melanoma in situ from closest peripheral margin 0.9mm. Deep margin uninvolved by invasive melanoma. Distance of invasive melanoma from deep margin: 0.5. mm.
Mitotic rate: None.
Lymph-vascular invasion: Not identified.
Microsatellitosis: Not identified.
Perineural invasion: Not identified.
Tumor-infiltrating lymphocytes:Not idenfitied
Growth phase: Radial and vertical  
Pathologic Staging PT1A. 
 
Above is the original diagnosis and below is the description of the procedure that my brother had earlier today. This is ALL new to me and I was wondering if the surgery below seems to be the best approach to this sort of melanoma case. I am reaching out to anyone to share any info. I am most curious to know whether you guys think that the doctor got the entire melanoma and if all of the margins were removed according to the description. 
 
 
PREOPERATIVE INDICATION: Melanoma on back.
 
PREOPERATIVE DIAGNOSIS: Melanoma on back.  
 
POSTOPERATIVE DIAGNOSIS: Melanoma on back.  
 
PROCEDURE: 1. Excisional biopsy of a malignant lesion on the back measuring 3.2 cm in maximum diameter including the margins.
 
2. Complex closure on the back measuring 8 cm.  
 
DESCRIPTION OF PROCEDURE: Estimated Blood Loss: 2 mL.  
 
Indication for Procedure: This is a 22-year-old male that came to my Plastic Surgery Clinic. He had a biopsy here at Mayo Clinic, it was read as a melanoma with a less than 1 mm depth on a shave biopsy, and no worrisome features. The plan was to do a re-excision with 1 cm margins. I met with the patient in the preop area today.  We had the opportunity to review the procedure in detail including the risks,
benefits, advantages, disadvantages and alternatives.  
 
The patient had the opportunity to have all questions answered.  The patient indicated to me understanding of the material as presented and voluntarily consented to have this procedure performed.  Both verbal and written consent were obtained for surgery.  
 
Description of Procedure: The patient was taken to the minor treatment room. He was prepped and draped in a sterile fashion. The edges of the lesion were marked under loop magnification, 1 cm margins were taken all the way around that. It was converted to an ellipse to include a shave biopsy just adjacent as well so that would not be on the healing edge of the incision to close. Next, 1% lidocaine with epinephrine was used to infiltrate the area. After sufficient time had passed for the local anesthetic to take effect, a 15 blade was used to excise the lesion all the way down to the fascia. It was marked at the 12 o'clock position and sent to Pathology for permanent section. Hemostasis was achieved with electrocautery. It was then undermined significantly and sufficiently to allow for tension-free closure. The edges were advanced and then quilting sutures were placed with 3-0 Vicryl, deep dermal stitches were placed with 3-0 Vicryl , and 3-0 Monocryl was run as an intracuticular stitch. Then the final layer of the closure was with Dermabond.  Patient tolerated the procedure with no complications, discharged in stable condition, given a followup appointment for just p.r.n. but told with any questions or concerns to follow up sooner. 

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Syvette's picture
Replies 4
Last reply 12/27/2016 - 10:15am
Replies by: Hukill, Gene_S, Syvette, Anonymous

Hi everybody! First-time poster here and I'm looking for some shared experiences regarding the surgery my Dad has coming up.

He was diagnosed about three weeks ago with stage II melanoma. He had seven lesions biopsied and six of them came back as melanoma. The lesions are spread across his scalp and behind one ear. He met with a dermatologist, oncologist, head and neck surgeon, and plastic surgeon over the last few weeks and their plan is to remove all the tissue on the top of his head (down to the bone), dissect and transfer muscle from his back, and then finish with a skin graft from his thigh. They estimate that it'll be an eight-hour surgery with five days in the hospital afterwards. 

After spending nearly three-decades no more than 100 miles from my parents, I just recently located nearly 2,000 miles away. It's been incredibly difficult moving digesting all this from a distance and feeling as though I don't totally understand the process, risks, or recovery. I'd love to hear the experiences of posters who've undergone similar surgeries themselves, or have supported loved ones as they went through the process.

Thanks!

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Aloha14's picture
Replies 2
Last reply 12/23/2016 - 12:12am
Replies by: Aloha14, jennunicorn

I'm back from the surgeon and although she said she would drain the fluid built up after lymph node removal, she changed her mind because she is too worried about infection. 

I don't understand how this works. Is the lymph system a closed system? After removing one isn't the place it was removed from stitched back up so there's no hole left? Is the extra fluid causing the lump supposed to reabsorb or what? Having this lump putting pressure on my muscle/nerves in the area down my lef is more uncomfortable than the large incision on my lower leg. 

 

 

 

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Nemesis's picture
Replies 6
Last reply 12/23/2016 - 5:46pm
Replies by: Sophietx, Nemesis, Dreaf01, Anonymous, Kenkussions

Hello everybody,

 

After reading this forum, I thought I'd introduce myself. I was diagnosed with melanoma last week. It is 0.94 mm deep (and not 0.94 cm as I was told over the phone). So stage 1, but barely. According to my doctor, no ulceration and not aggresive (I take that to mean that the mitotic division was low). Going in for SNB next week.

 

I am 34 and got a 6 month old baby at home. Was going to have one more, but it seems that pregnancy may make melanoma come back. Don't know. All is new and scary.

 

Wish me god luck! I am sorry we have connected under such circumstances.

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/28/2016 - 1:50pm

My daughter has had a scabbed over blister for a few months. I've had stage 1a melanoma myself so I of course worry about these things. We took her to the dr while back and he said the blister healed over and it would pop and ooze. It did this and now it's kind of dried over. It is smaller and doesn't bother her. I've actually had another dr look at when we had a cold apt. They told me the same thing that it was getting callused over and it was just take time to continue to go away. I feel like I'm being a little crazy but the Internet can do that. She won't let me touch it and I don't won't to pick it off. I know the signs for modular melanoma and this place is not hard and it has gone down in size. I guess I'm just looking for some piece of mind. Thanks! Crazy mom lol

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Already have systemic disease and am on immunotherapy with Ipi Nivo due to spread to visceral organs- am10 weeks in to therapy and have two new pea size lumps on scar line of previous lymph node dissection in groin. Any one with similar experience ? CT scan due in 4 weeks. Oncologist has examined them. They seem to have got slightly bigger this week.

Could this be a reaction triggered by immunotherapy drugs...or is it more realistic to suspect that they are either new malignant lymph nodes or new sub cutaneous spread . They are not tender or painful. 

Any relevant feedback welcome- good or bad news ...am wondering if they would be likely to do ultrasound aspiration or more surgery if it is  melanoma or  just leave as is and see if ipi nivo does the trick as the melanoma cat is already out of the sack and beyond my lymph system ? 

Thank you for reading.

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Anonymous's picture
Replies 2
Last reply 12/27/2016 - 12:38pm
Replies by: Anonymous, landlover

Already have systemic disease and am on immunotherapy with Ipi Nivo due to spread to visceral organs- am10 weeks in to therapy and have two new pea size lumps on scar line of previous lymph node dissection in groin. Any one with similar experience ? CT scan due in 4 weeks. Oncologist has examined them. They seem to have got slightly bigger this week.

Could this be a reaction triggered by immunotherapy drugs...or is it more realistic to suspect that they are either new malignant lymph nodes or new sub cutaneous spread . They are not tender or painful. 

Any relevant feedback welcome- good or bad news ...am wondering if they would be likely to do ultrasound aspiration or more surgery if it is  melanoma or  just leave as is and see if ipi nivo does the trick as the melanoma cat is already out of the sack and beyond my lymph system ? 

Thank you for reading.

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Everymoment's picture
Replies 2
Last reply 12/23/2016 - 4:30pm

I had vulvar melanoma about seven years ago. I had my labia removed and SNB was clear. The past couple of months I noticed a sore on my labia. I went in today and the doctor said I had a swollen node right next to where my mole was. She biopsied it and called my oncologist. I can't believe this. I'm devastated. The results are coming back next week.

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jenny22's picture
Replies 8
Last reply 12/25/2016 - 7:21pm

Has anyone heard from or been in touch with Jamie.....from what I can see his last post was 10/21......

Jamie- if you can, please post and let us know how you're doing.

tks,

jenny

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Kenkussions's picture
Replies 13
Last reply 12/29/2016 - 3:46pm
Replies by: Kenkussions, Anonymous, Michelle820, Janner, jennunicorn, debwray

Hello everyone,

I was just diagnosed (12/19/2016) with Melanoma In Situ on my neck. I have a family history of skin cancer (both my father and grandfather) however, I have found out that all of theirs came back as BCC or SCC not melanoma. I go in for a WLE on 12/27/2016 and am fairly nervous as I know I will be awake and the spot they are removing is right behind my ear (I feel like I will hear everything being cut/ cottarized. Apparently they will leave the wound open for 2 days for testing then if all clear margins I go back in Thursday 12/29/2016 to get sewn up/ more removed if not clear. Those two days do not sound very fun but after researching online and on this forum I realize I just have to get it done. I now know that the "in Situ" is the best possible diagnosis if melanoma is present but I am very fearful that there may be more on my body that we are not finding. Below is what the pathology report came back as any insights would be appreciated. I am just scarring myself reading all of these stories of how often melanoma tends to come back with a vengeance. 

Diagnosis:

Left occipital scalp-

Melanoma in Situ

Note: There are features of a dysplastic nevus as well. Pathologic stage: pTis.

Clinical Data:

Dysplastic Nevus

 

Gross Description:

Received in formalin labeled with patient's name is a tan shave biopsy measuring 7mm x 7mm x 1mm. Specimen submitted in 1 cassette, 2 pieces.

Microscopic Description:

There is a proliferation of atypical melanocytes present in the epidermis with irregular nests of melanocytes aggregated at the dermoepidermal juntion and solitary melanocytes present within the epidermis. The process is confined to the epidermis. These changes represent primary malignant melanoma in situ.

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Anonymous's picture
Replies 6
Last reply 12/22/2016 - 9:30pm
Replies by: Anonymous, keepthefaith11, Janner

After my appointment last week where I was told that melanoma was highly likely in a mole that I had punch biopsied, the pathology report came back with "junctional melanocytic nevus, dysplastic type with severe atypia". My doctor said this was the best report I could have gotten since clinically, what her and the other doctor were seeing was melanoma. I am having it removed next week where she is going to take wider margins than usual (5-6mm) and then that will be sent to pathology. 

can anyone help me understand what exactly the path report means. Could I still have melanoma? The doctor basically said, it is an atypical mole and cells that are changing and we're lucky to have caught it now. 

Im feeling so relieved but still need some clarity. This has been the worst week of my life thus far waiting for the report since I have a 8 week and 18 month old. Any input would be greatly appreciated.

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_Paul_'s picture
Replies 24
Last reply 12/25/2016 - 8:44pm

That's what it says on the timeline. 4 days form the TIL and 2 days into chemo.

The biggest problem to date has been pain control. The mel is causing a lot of pain on my right side making getting up and down, well, painful. During  day one I was getting chemo at the clinic, then after a very long day going to the hotel to crash.  But I could only have oral pain meds at night, and there was some throwing up, so I was a bit of a mess the next morning.

Anyway the next day they were unable to keep the nausea under control so they sent me to the UW Hopsital full time. After 5 more days of chemo I go to the ICU here for the TIL.

They say the first two days of cyclophosphamide are worst the the next five days fo fludarabine. My first dose of the fludarabine is in 90 mins.

However I am still cracking jokes and some of the nurses even laugh.

- Paul

 

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Bubbles's picture
Replies 2
Last reply 12/22/2016 - 5:05pm
Replies by: MaPerny, jennunicorn

...so sayeth many melanoma reserachers.  Here is a copy of an interview Weber gave this month that breaks it down.  (Great thanks to Eric and B for their melanoma snooping today.  Lots of slides from a PrimeOnc presentation that presents data on many of the combo's Weber addresses...when I get the chance!!!)

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/the-future-for-melanoma-treatment.html

Blessings to you all this holiday season.  We have all borne the scars of melanoma.  However, we will move forward...TOGETHER!!!  love, c

PS...if you're sick of melanoma and just want to eat cake!!!  ~  the post below this one is perfect!!!  :>)

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Marina_fonseca's picture
Replies 1
Last reply 12/22/2016 - 2:30pm
Replies by: Tim--MRF

Hey everyone! I am new to the forum and have just gotten the results of a biopsy I had 2 weeks ago. 

It says my mole is 1.2cm X 0.9cm X 0.7cm and has an irregular epidermal surface.

It also says in the microscopic analysis that:

- histological cuts show fragments of skin with proliferation of fusiform or dendritic cells, intensely pigmented. Distributed in dense collagen.

- and that the borders are clean.

 

the final diagnosis presented (in the biopsy) is a blue neavus.

I sent my dermatologist the results and she said that they're normal and I shouldn't worry. I'm scared because the results seem so scientific and weird and I don't know how to interpret them.

Has anyone else had any results similar to this?

Also, the pathology report was really short. It had 3 lines written and it didn't have any of the markers tested and any other information. I thought that was a bit odd.

Anyways, 

Should I get a second opinion on the results? I have a family history of skin cancer (mostly melanoma) and I know it's not something to play with.

thanks for your time :). 

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adriana cooper's picture
Replies 13
Last reply 12/26/2016 - 12:10pm

I am sad to read of the extreme challenges many are having recently. Luckily Adriana has been doing relatively well recently and restarted pembro two weeks ago. We greatly appreciate the continuing support from all on this site.

Remembering to live life, our wedding is on Friday at 2 PM PST and invite you all to our live stream.

We hope you can visit our wedding live stream on Friday Dec. 23, 2016 at 2PM at ActionPhotosNW.com

Happy Holidays, Rob and Adriana

Adriana

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