recently Dx-ed, next step?
I am 26 yo male. Nov 7 - removed 4x6 mm mole with discolorations, no ulcer. Lab report is very short: "MM, margins seem free of malignancy". No depth, no mitotic, etc. Nov 16 - removed 5 mm skin around the initial spot "as precaution". Dr staged 1B, and said nothing else is needed, just observation. This all was in state of Maryland, I moved out early Dec.
Internet says: PET scanning and sentinel lymphnode biopsy might be needed. So question is do I need to pursue arranging these for me?
I would greatly appreciate if other survivors kindly offer me support and share their experiences what I should do now?
Thank you all.
Stay off the internet! As you have found, it only tells you that you are a goner.
Originally Posted by UBContributor
A cancer on the outside of your body is far better than one on the inside - especially since it was found early, had not penetrated to the sub-dermal layer, had clear margins and an extra 5mm was taken. By the book. All evidence indicates that it is gone.
This is the best news, and the best advanced warning that you could possibly receive. You are now warned that you are susceptible to melanoma. Thus, forewarned is forearmed. You and your dermatologist can now be vigilant for any potential recurrence at that location, or in other locations.
It is also your warning to use SPF clothing, sunscreen, avoid the sun - things that the rest of us routinely have to do. I have a friend who has had two melanomas removed. He's fine. His mother had one just beneath her eyebrow. Required a bit of plastic surgery. She's fine.
If I were you, rather than be 'concerned', I would celebrate the fact that you know who the enemy is, can prevent his return, and know how to defeat him should he attack again. I wish I had that a few years ago.
Do what doctor advises: Watch. See your dermatologist as recommended and check yourself as needed - just don't become OCD over it.
07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed.
01/12/15 Belinostat resumed/Failed 02/23/15
02/24/15 Pralatrexate/Failed 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a type of bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of those drugs at least twice), + 4 immunosuppressant drugs.
I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.
"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
- Hebrews 11:1
Thank you for responding
Pal, I appreciate you replied to my post. I also read your treatment history, it is impressive and actually scaring... I shall be looking forward to many new lines with positive message and word "remission" !
You didn't say how deep the lesion was?
It is hard to know with stage IB melanoma whether SLNB is warranted without knowing the depth of the lesion. Generally speaking, for lesions under 1 mm SLNB is not usually recommended unless there is ulceration or some other factor that makes the melanoma seem higher risk (higher mitotic rate possibly, or regression, or if your melanoma was mucosal, which is a more aggressive type of melanoma). You said no depth (?), and no mitosis (presumably less than 1), and you did not mention ulceration, so it is possible you would not need a SLNB.
I am not an expert, but a PET scan is ordered when there is concern the melanoma may have spread. This would be suspected if your SLNB was positive or your lesion was particularly deep or ulcerated. In other words, it would be unusual for a physician to order a PET CT without any indication that your melanoma had spread, was deep enough to have spread (greater in depth than 1 mm), or had reached your lymph nodes (detected by doing the SLNB).
If your lesion is thicker than 1 mm, then SLNB it might be something worth pursuing. Based on the results of the SLNB, you would either remain stage IB or you would be staged at stage III, which means lymph node positive. This could affect your care in terms of how often you have followup and scans. It might also be a relief to know if it came back clear.
Good luck to you in making this decision!
Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
PET CT, NED, July 2013
Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
PET CT, still NED, June 2015
PET CT, NED, June 2016