/r/Melanoma

Photograph via snooOG

A support group for patients who have been diagnosed with melanoma, are undergoing treatment, post treatment, recovered/in remission and caregivers and medical staff. This is a place to find support or ask/answer questions about melanoma - please do NOT post here if you are afraid that you might have cancer or have basal cell skin cancer.

A support group for patients who have been diagnosed with melanoma, are undergoing treatment, post treatment, recovered/in remission and caregivers and medical staff. This is a place to find support or ask/answer questions about melanoma - please do NOT post here if you are afraid that you might have cancer or have basal cell skin cancer.

/r/Melanoma

10,046 Subscribers

6

How far to accommodate?

Looking for advice…. My husband m73 has stage iv melanoma with brain metastases in the frontal temporal lobes (which affect his executive functioning and short term memory). He has been through immunotherapy, SRS and has been on targeted therapy for three months. His last PET scan showed great progress with just some small residual cancer in his lymph nodes and brain metastases, while still present, have stopped growing. Things are moving in a positive direction right?! At our last oncologist appoint husband was complaining of the intense fatigue he was experiencing so his onc suggested cutting his dose of the targeted therapy drugs in half to see if it has any effect. We agree and go on our way. Now my husband claims I’m sabotaging his treatment and insists that I give him all of the pills he should be taking. He claims that it’s the targeted therapy drugs that are giving him energy and he needs to take them all. We are due to check in with the onc on how his reduced dosage is working in about two weeks and it seems like a waste of time for us to go to the onc if my husband isn’t taking the reduced dose. How long should I accommodate his misunderstanding of what the doctor is recommending? He claims that the doctor never said to cut the dose and I must be making it up. I’m thinking to contact the doctor and ask them whether to postpone the appointment. Thanks for reading

3 Comments
2024/12/01
00:00 UTC

5

Acral lentiginous melanoma

Anyone here has any idea about the clinical trials going on for acral lentiginous melanoma? Trying to get more information on this for my dad who recently got diagnosed with ALM.

4 Comments
2024/11/28
01:20 UTC

6

Immunotherapy side effects good news stories?

0 Comments
2024/11/27
09:01 UTC

8

Questions

I was diagnosed Wednesday, had the biopsy almost a full month ago and they said they'd have to remove some more skin from the site to make sure it's all gone and some more tests and I'm mostly just waiting on that call from the oncologist but I have so many questions and google isn't actually helping too much so I figured this would be the next best place to ask.

The histologic type is melanoma but not otherwise classified, what does this mean? I know the histologic types are for what kind of cells they are but no where is telling me what not classified means, does it mean I need more testing to know? Was it just not bad enough to be able to tell yet?

Do bigger biopsies take longer to heal? I got told I'd feel better like a couple weeks after but my back still kills if I'm upright too long or stretch too much, I followed all the instructions and it doesn't look infected but it doesn't look totally healed either, is it going to just look red for a while? The pictures of biopsy healing online get skin coloured again within a couple weeks(lmao I am not looking forward to them going back in and redoing this whole healing process)

Google may be the death of me here BUT, non-ulserated means that it doesn't bleed and there wasn't broken skin right? Does that mean like just for when the biopsy was taken or could that be wrong? Cause the mole they stole would randomly bleed or get all scaly or randomly scab up but it wasn't acting like that when I got the biopsy

Online it says derms usually do like a full body look over and check things like lymph nodes during an appointment, mine didn't, is this something I should be prepared for the oncologist to do or is it just a dealers choice thing on if they do that?

9 Comments
2024/11/24
22:23 UTC

4

What to translate for second opinion?

Hello everyone. My friend (36F), got diagnosed with metastatic melanoma a few days ago. We want to get a second opinion abroad and I am wondering exactly which documents from her medical history are important for doctors to have translated in order to form their opinion? Am I wrong to guess that the most important are 1) the hospital’s release forms where the doctor states the final diagnosis, 2) the doctor opionion after PET SCAN, 3) the biopsy results, 4) lastest bloodwork? Or should we translate every single piece of medical paper she got? Thank you in advance. Wishing you/us all health and peace.

2 Comments
2024/11/24
19:24 UTC

5

Prosthetic fingernail

Hello, I had a fingernail removed as I had melanoma on my fingernail. I’m wondering if anyone has been through the same thing or knows if prosthetic fingernails is a thing? Thanks!

1 Comment
2024/11/24
02:42 UTC

3

New diagnosis

Hi all,

My brother was officially diagnosed with melanoma today. Had punch biopsy of ear lobe in family doc office and saw plastic surgeon today where they removed his entire ear lobe.

I had a peek at the pathology report and it mentioned Breslow 0.5mm and Clark II, invasive, non ulcerating.

Surgeon said superficial spreading melanoma and has started to infiltrate.

He is thinking it wouldn’t be in situ based on starting to infiltrate and also said after the wide excision of the ear lobe that my brother could be upstaged/restaged depending on what they find. Sound correct??

My question is how useful is a punch biopsy in the accuracy of Breslow and Clark or is it likely that they will find it is actually deeper?

1 Comment
2024/11/21
23:29 UTC

3

Possible Recurrence Close to WLE Scar

My fiance was diagnosed with Stage 1b Melanoma 2 years ago. He had WLE that came back with clean margins. He did not have SLNB but he did have Castle (GLE) test that came back low risk. A troubling irregular shaped dark purple spot suddenly appeared on his forearm just below the scar from his previous tumor removal. We are not exactly sure when it presented but it appeared so suddenly and was not noticed by his dermatologist 2 months ago when he went to his quarterly checkup. I understand that certain Melanomas grow rapidly and are not always black like the tumor 2 years ago. We have an appointment tomorrow with his dermatologist and I am sure he will take a biopsy. Of course I am freaking out. If this turns out to be a recurrence, I am definitely getting an oncologist on board. Any other recommendations would be appreciated.

3 Comments
2024/11/20
22:13 UTC

6

Excision or follow-up for an atypical mole?

I (23F) went and had a shave biopsy of a weirdly dark, but very small (0.4 cm) spot on my upper left arm. I received a call last week and was told that it came back as atypical, particularly “moderately dysplastic compound melanocytic nevus,” and the chance of it developing into melanoma is “low to unknown.” They said they want to be “extremely conservative” and recommended for me to have it completely excised, but they also said that I have the choice to come back for a 3-month follow up instead, which would include a full-body exam.

I’m not exactly sure what the best choice is here, and I’ve had varying degrees of health anxiety about the whole thing. My mom says that getting it removed would be excessive, but she’s not a doctor. I thought it would be helpful to get some advice/ input from those who actually have knowledge and experience regarding these things. Thank you!

Edit: Thank you all so much for your comments! Just scheduled the appointment

7 Comments
2024/11/20
21:37 UTC

3

I was told yesterday I have Basal Cancer. BCC

I know it’s longer word but I didn’t want to butcher the word up.

Last week I finally went to a dermatologist about these growths on my face. Had them maybe 5 years or so. He immediately took the one off my nose and after some discussion took the one off of my cheek bone/ temple area. It was smaller but had a weird texture about it.

It was confirmed I have Basal Cancer.

He recommended a local plastic surgeon that had done this for him in the past. He also says it will minimize the scarring.

So my wife is uncomfortable with the plastic surgeon as according the their website it’s mostly breast and tummy augmentation stuff.

So my wife got me an appt with U of M. Big cancer doctors.

The trade off is U of M has my first consultation in a month and the surgery 4 months from now.

Whereas the plastic surgeon can get it done within a month.

Of course I’m stressed out about this.

Thoughts about the time delay vs quality and also thoughts about scarring vs non scarring.

The point of contention is on the bottom left nostril.

Thank you in advance.

Mohl’s surgery

12 Comments
2024/11/20
19:30 UTC

12

Excision a bit more intense than expected!

I went in for a mole that randomly popped up on my arm this summer and grew into a round, shiny, and pink bubble. Shave biopsy confirmed melanoma pT1a so I had it excised yesterday. I'm not sure what I was expecting but JEEZE the amount of my arm they took was huge! The mole measured 4mm across and my scar is 8.2cm, and it seems the amount they took was at least half that wide too, all the way down to the fascia covering my muscle (I watched them... equal parts fascinating and disturbing!)

Any tips to reducing the tension on the sutures? Honestly that's the only pain I am feeling. Sutures come out the day after Thanksgiving.

10 Comments
2024/11/20
13:09 UTC

19

New Trial results increasing Overall Response Rate by 50%

Latest data from Scancell and its SCIB1+ trials in the UK just released. In late stage Melanoma patients they are getting a 72% Overall Response Rate against the current Standard of Care by Bristol-Myers Squibb which is 48%.

Early days but extremely promising data. Low toxicity as well.

https://www.proactiveinvestors.com.au/companies/news/1060871/scancell-s-new-ceo-takes-the-helm-of-a-cancer-immunotherapy-specialist-in-rude-health-1060871.html

0 Comments
2024/11/19
05:37 UTC

3

FAA Medical Question

Stage 3C here. I'm waiting for the end of treatment to apply for a Special Issuance First Class. Has anyone here has dealt with the FAA for melanoma issues? I'm curious as to turnaround time and conditions after the Special Issuance is issued.

0 Comments
2024/11/17
08:09 UTC

18

Just diagnosed

34F and just diagnosed. A few weeks ago my husband asked what was on my ear and I am so thankful he found it. My biopsy was done last week and I got the call earlier today that it is the earliest stage of melanoma. I have a plastic surgery consult and possible surgery that day at my dermatologist office in early December. I was also told I will need full body checks every three months for a long time.

I feel relieved my husband saw the mark on my ear. But I am scared even if it was caught early and everything will be fine I’m still scared.

20 Comments
2024/11/16
00:18 UTC

3

Anorectal melanoma?

Anybody hear of any recurrence occurring rectally in the past? Had WLE (arm), SLNB (clear) in July and right now have what's called a thrombosed hemorrhoid so rather concerned about that. Never any history of hemorrhoid issues in the past.

2 Comments
2024/11/13
16:04 UTC

6

Swelling in leg from lymph removal

Just trying to stay active , and using a gau sha stone to massage . Is it forever ? Or will my left over lymph nodes kick in ?

1 Comment
2024/11/12
19:42 UTC

14

3 year old son diagnosed

Hello everyone,

My 3 year old little boy had a mole spring up pretty rapidly and we decided to have it looked at and removed via shave biopsy a couple weeks ago. They let us know on Friday it came back positive for melanoma. We are meeting with a pediatric oncologist tomorrow afternoon to make a plan, but I was hoping to hear from some people who have gone through this to let me know what to expect.

Our dermatologist said it’s very rare for a toddler to have melanoma, especially when it was in a place not very exposed to the sun. No history of cancer on my husband’s side, but my parents both died before 65 from different cancers, and their siblings have had a myriad of diagnoses as well.

They didn’t tell us what stage or anything, and haven’t updated his online chart for me to look at and have any more info.

25 Comments
2024/11/11
20:00 UTC

1

[Research] Recruiting for PhD dissertation study - Exploring Online Support Group (OSG) Use Among Sexual and Gender Diverse (SGD) People Diagnosed with Cancer in Canada

Hi everyone! My name is Lauren Squires (she/her), I'm a PhD candidate in public health at the University of Toronto and a graduate student at the Princess Margaret Cancer Centre in Toronto, Canada. I'm recruiting for my PhD dissertation study using intersectionality to explore online support group (OSG) use among 2SLGBTQ+ people who have ever been diagnosed with cancer in Canada. The project is queer led (I'm a white cis queer woman), and aims to improve the supports available to members of 2SLGBTQ+ communities with cancer in Canada.

To be eligible to participate you must:

  • Be someone who identifies as sexual and/or gender diverse (e.g., Two-Spirit, lesbian, gay, bisexual, transgender, queer, asexual, etc.);
  • Be 19 years of age or older;
  • Be someone who has ever been diagnosed with any type of cancer;
  • Currently reside in Canada.

The project has ethics approval and involves a 25-30 minute online survey, followed by an optional 60-90 minute interview. Survey participants will have the option to enter a draw for one of five $50 Amazon e-gift cards, and those who participate in an optional interview will receive a $25 honorarium to thank them for their time.

Link to study flyer: https://drive.google.com/file/d/1-V8xFNidl2PfufQRcFKOg9lbsStTxs7r/view?usp=sharing

Link to research ethics board (REB) approval document for most recent amendment: https://drive.google.com/file/d/10G4Fpurv5uHxDXb_T0OVmx1QKZwYkacP/view?usp=sharing

If you have questions or are interested in participating please contact me at lauren.squires@uhn.ca

Thanks so much for your time and consideration!

Lauren

0 Comments
2024/11/11
18:59 UTC

7

Shape of your melanomas?

Looking for some insight here. I have been diagnosed with two melanoma in situs within just a couple weeks of each other. First one was found and the derm had a long wait for removal so I went elsewhere where they removed it and found the second in situ while there for the WLE that the first one missed.

I’ve since gone back for my 3 month check and am pending two more biopsies.

My question is….have most of your melanomas been even border and not asymmetrical? I feel Like the ABCD thing they say to look for has never applied to me. My two have both been just brown even edges and perfect circles. This third if the biopsy comes back positive will be another just brown even circle. I feel like I’m just so lost as to what to look for and am paranoid now that my multiple moles that are all brown perfect circles are a bunch of melanomas going undetected. Even the dermatologist said her threshold for biopsies for me is low because my melanomas haven’t looked anything like melanoma. Any insight, thoughts you have I’d love. I’m perpetually paranoid now. I hate living this way!!

9 Comments
2024/11/11
03:14 UTC

3

is it smart to find the best doctor for surgery to remove remainder of malignant cells?

my mom just got diagnosed with melanoma. she had this abnormal freckle on her cheek so she got a biopsy and it came back as melanoma, but she now needs to have a surgery (MOHS) to remove the remainder of the malignant cells. should she go around and try to find a highly rated and qualified doctor to do this? or does it not really matter and just go with the most local doctor who can do MOHS?

also, should she look into WLE instead of MOHS?

3 Comments
2024/11/09
00:26 UTC

4

BRAF V600K/R/M

Hello Everyone !

My father who is is great shape, 70yrs old, 169lbs with Type2 Diabetics and High blood pressure, and high cholesterol. He is not obese or overweight and runs or goes on walks almost daily 3-4miles, and he has been eating well the past few years.
He just got diagnosed with Stage3c Melanoma, on his scalp and it moved to a few of his neck lymph nodes. We got genetic testing done before treatment, and it came back with BRAF Positive V600K/V/M. Three different mutations. Upon my reading many BRAF mutations are V600E, and few are what my dad has.

Has anybody had this BRAF mutation? I'm worried and Im just not reading good outcomes on the research papers. What would be the best line of treatment in you all opinions, I had 2 consultations, both of whom said Neoadjuvent, but one recommended NIVO/IPI and the other NIVO/relat (Opdualag).

Your experiences and thoughts are welcomed! Would love to hear from all of you! Thank you!

0 Comments
2024/11/08
20:00 UTC

22

Wife has stage 4 Desmoplastic Melanoma. We have done immunotherapy with negative results. We leave Sunday to go down to UCLA, Where Tuesday she starts 7 days of chemo, then TIL Treatment. It will be a long 40+- days. Hopefully we have positive results.

4 Comments
2024/11/08
03:45 UTC

12

Unfortunately new member

31M diagnosed with superficial spreading melanoma on the back of my head. Via biopsy. I don't know much about what I'm going into, second cancer I've had in 6 years (tc survivor) I'm very scared, hoping this isnt the end of me have an appointment with surgical oncology tomorrow. I don't understand my biopsy completely

MELANOMA OF THE SKIN: Biopsy

MELANOMA OF THE SKIN: BIOPSY - All Specimens

8th Edition - Protocol posted: 3/23/2022

SPECIMEN

Procedure: Biopsy, punch

Specimen Laterality: Not specified

TUMOR

Tumor Site: Skin of scalp and neck: scalp

Histologic Type: Superficial spreading melanoma (low-cumulative sun damage (CSD) melanoma)

Maximum Tumor (Breslow) Thickness (Millimeters): 0.9 mm

Ulceration: Not identified

Anatomic (Clark) Level: IV (melanoma invades reticular dermis)

Mitotic Rate: None identified

Microsatellite(s): Not identified

Lymphovascular Invasion: Not identified

Neurotropism: Not identified

Tumor-Infiltrating Lymphocytes: Present, nonbrisk

Tumor Regression: Not identified

MARGINS:

Margin Status for Invasive Melanoma: Invasive melanoma present at margin

Margin(s) Involved by Invasive Melanoma: Peripheral

Margin Status for Melanoma in situ: Melanoma in situ present at margin

Margin(s) Involved by Melanoma in Situ: Peripheral

PATHOLOGIC STAGE CLASSIFICATION (pTNM, AJCC 8th Edition):

pT Category: pT1b

Can anyone help me understand this better? Is it at least trending in a slightly better outcome?

24 Comments
2024/11/07
20:30 UTC

5

Severe Atypia and PRAME Positivity – What to Expect After WLE?

During a routine skin check, I had a shave biopsy done on a mole on my right cheek. The mole was 7mm in diameter but had been there for at least 10 years. The pathology report came back as a "Compound Dysplastic Mole with severe atypia, present at the peripheral and deep margins". The report noted: “It is recommended that this site (and any clinically apparent pigmented lesion) be re-excised with a margin of normal skin. The lesion is immunoreactive for PRAME."

I had an excision done yesterday, one month after the initial biopsy, and now awaiting the second pathology results.

I’ve read that PRAME positivity is often associated with melanoma, and I’m concerned about this. Is it possible that it’s a melanoma of a more advanced stage, but the melanoma cells weren’t detected in the initial shave biopsy?

I know every case is different, but I’d be happy to hear about similar experiences from anyone who’s gone through this.

3 Comments
2024/11/07
14:40 UTC

7

Early Melanoma

Hi all,

My brother had a punch biopsy on his ear and it came back with possible early melanoma, but doc sent him to plastic surgeon (referred) to excise margins and go from there. This plastic surgeon is pretty general (not a surgical oncologist). Do you think it’s okay to start with a general plastic surgeon or should it be more specialized? I don’t want him to fall through the crack.

Thanks

6 Comments
2024/11/07
00:09 UTC

8

Reoccurrence

I have a reoccurrence at my surgery site on my scalp. What will they do ? Surgery again, I’m sure. Has anyone had this ? Treatment plan ? I’m scared.

4 Comments
2024/11/06
16:02 UTC

3

Should we be positive about this diagnosis?

My husband's melanoma biopsy came back as stage 1B superficially spreading melanoma. The tumor is classified as pt2a and the mitotic rate is 3/mm2. The dermatologist who removed the mole confirmed he removed all of it and the margins were clean. The Breslow depth is 1.4mm. Based on this, can we be positive about the diagnosis? I know there is a chance that the cancer could have spread to the lymph nodes, and my husband is scheduled for a wider excision and potential SLNB next week. Does anyone have a similar diagnosis and did it include spreading to the lymph nodes?

19 Comments
2024/11/06
07:33 UTC

2

Highlighted Area on MRI Growing

So my mom’s brain tumor hasn’t returned, but the area where it used to be is highlighted and growing on a recent MRI. They think it’s necrotic/scar tissue, but say it’s hard to differentiate cancer cells from necrotic tissue. She returns in 3 months for a follow up MRI, but I was wondering if anyone else with Melanoma that has metastasized to the brain has experienced this.

1 Comment
2024/11/06
00:52 UTC

17

Can stage 4 melanoma with met to brain go into remission?

After surgery, several rounds of immunotherapy, targeted radiotherapy & 26 days in hospital trying to get seizures under control, the doctors told us my sister was in remission - except they were not forthcoming with this information and only said it over the phone when she specifically asked. This of course had made us a little wary about if there was complete truth behind this news and we haven’t been able to really celebrate it as the good news it should be.

She has just gone in for her next scan and I feel sick to my stomach with worry. My mind is a mess and I just keeping wondering why the doctors only said that when asked. Can stage 4 go into remission? What does this even mean exactly in this circumstance? It’s melanoma of unknown primary & braf positive if that makes any difference.

17 Comments
2024/11/05
14:39 UTC

6

Curettage and electrodesiccation

From what I've read, an excisional biopsy is the preferred initial treatment for suspected nodular melanoma? Is there a specific reason a dermatologist would use curettage and electrodesiccation instead?

18 Comments
2024/11/03
06:52 UTC

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