2.4mm melanoma and terrified - looking for advice & supp

Alex14334

Hi all,

Im 26yrs old and was last week told that the mole removed from my back is a 2.4mm melanoma. I've got a consultation at christies tomorrow night to discuss the SNB that will take place and the dye that will be injected to check the rest of me so to speak. Ive just started my dream job, bought my first house and met the greatest girl in the world who I love to bits. Like all of you here must have, I'm going through an erray of emotions that i never thought i would have to entertain. My absolute horror and fear has recently turned to anger as to why this is happening to me and why its happening to me so young. I suppose I've always thought of cancer as something that effects the older generation and those who have been stupid enough to expose themselves to sun beds etc. I fit into neither of these catagories and I'm just struggling to cope.

The posibilties as I have been told are that

1) the mole that has been removed and the cancer has spread no further
2) The cancer has spread to my lymph nodes
3) The cancer may have one even further and spread into an organ etc

I've been thinking as positively as possible about this and am praying that the cancer has gone at least for now. The main question that keeps playing on my mind is how long has this thing been festering in my body potentially leaking into the rest of me. Since the news I've felt genuinely ill although I know this has been brought on by lack of sleep and worry I cant help thinking the worst. The thing that doesnt make sense to me is that I'm a fit and healthy guy. I dont smoke and i regulary excercise etc and I had always thought that if i had cancer...surely I would feel really ill!!!??

I suppose my question to anyone who can offer any answers and maybe support is whether anyone here has been / is going throught the same thing i.e. the same depth of melanoma at a similar age. I'm also eager to know how soon after the SNB has taken place will I be told the results of it. The waiting in all this is the worst part without question. I need to know where I stand so I can start to think about how I am going to deal with it all.

Thanks so much for reading and taking the time to reply if so. Any guidance or support can only help!

Alex

Mimze · New User Joined: 21 Apr 2009 Posts: 9

Hi Alex, my MM was diagnosed June 2008 at 2.13mm. I had a wide local excision to determine if any melanoma was in the surrounding area, and then the SNB. It took about 3 weeks for the results of the SNB to come back. They took about 5 nodes and all tested clear for melanoma. Age wise I have about 20yrs on you, but my mole had been there practically all my life. I now have 6 month visits to the Oncologists (surgical/medical) for the next 5 years.
All of your fears and emotions are justified. I found that once I'd spoken to my oncologist though, I really wasn't as terrified as when I'd first been diagnosed by the dermatologist.
Try and stay positive, there are some brutal stories out there about Melanoma (I scared myself) but always remember everyone is different. I hope and pray you get amazing results.

Mimze

Alex14334

Thanks Mimze Smile

I had my appointment with the surgeon on Monday and all in all the outlook he painted was much brighter than the original info given by the dermotologist - much the same as you. He seemed much more positive and pretty sure about the fact that i would be extremely unlucky for the cancer to have spread. I have my operation on the 30th April and will be having the SNB removed (at my request) and just hope it all comes back ok! I do feel much better about the whole thing haing spoken to the specialist though. Thanks for the reply. Any positive accounts only help keep us upbeat!

Alex

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 135

Alex, my melanoma tumor was exactly 2.40mm Breslow thick -- as yours.... further, it was non-ulcerated (a good thing); mitotic rate (number of malignat cell divisions... a marker for how agressive is the tumor was less than 1; 0 or 1 or fewer is good).... Bottom line is that I'm Stage IIA with a negative SNB, and I'm 8.5 months out from my WLE and SNB....

Assuming that your tumor was non-ulcerated, you're likely going to be Stage IIA -- localized melanoma. I read the definitive study which drove the American Joint Cancer Committee's (AJCC) melanoma staging system changes which came out in 2002 and the survival rate for Stage IIA with a negative SNB (emphasize pathologically negative nodes) was 85% at 5 years and 73% at 10 years..... This is different from the stats quoted for the 2002 AJCC Stage IIA mel patient population EN TOTO which is 78% and 64% respectively because the 2002 AJCC system also included Stage IIA patients whose node status was diagnosed clinically -- i.e. the doc felt the nodes ..... SNBs were not standard of care universally in the US during the data period of the study (roughly 1990- 2000)

Everthing you're feeling is PERFECTLY NORMAL....and a bit of deja vu for myself when I read your first post.... I was 49 when diagnosed, though the tumor was there for sure when I was 48 (at least 8 months before I had it removed).... and it didn't fit any of the ABCDs except "E" -- which isn't used much -- for "evolution" or change... And it was on the bottom of my left foot's 2nd toe which was amputated....A derm I saw in December 07 dismissed it as a wart; a podiatrist I saw in May 08 failed to remark on it... Finally, I saw another podiatrist in July 08 who removed it and, THANK GOD, had the sense to biopsy it rather than chuck it in the bio-hazard bin. I owe whatever life I've had since and into the future to this podiatrist (in part), and even he thought it was a wart.....I had my WLE and SNB on Aug 21, 2008 and I had the results back in 2 weeks after my operation was performed at a National Cancer Institute designated Comprehensive Cancer Center in St Louis, MO where I was treated (though I live in Hawaii)....

Take some comfort in knowing that 85% of all SNBs come back negative for metatasis... I just read a study today by Dr Sondayk, a well known oncology surgeon in the melanoma community, and at 2.40mm, his study -- which is just A SINGLE study -- had the probability of a positive SNB at a little less than 20% for tumors 2.40 thick (this from "eyeballing" his chart)... OR, put more positively, you have greater than an 80% chance that the SNB is negative....

I'll be up front with you, tumors on the trunk -- i.e. the back and chest -- CAN drain to more than one regional lymph node basin... depending on the location, they can drain to one or both axillary basins under the armpits .... The trunk is still a better anatomical location if one has to have mel than the head and neck location which can drain to at least 4 different nodal basins... BE SURE to ask your doc if the lymph node mapping which identified the SNB was unequivocal (or close to it)...it most likely was dead on with modern lymphadscintraphy but it doesn't hurt to ask....If he doesn't know, ask him to follow up with the nuclear medicine folks who performed the mapping....

Things DO get better with time in terms of dealing with your diagnosis emotionally and psychologically ..... I am NED -- No Evidence of Disease -- RIGHT NOW and it is still hard to believe that I had cancer... I don't feel sick, never felt sick during my recovery, and can still do everything after my diagnosis which I did BEFORE my diagnosis, even with one toe and a bit of my front left foot missing...

The task before us right now in recovery and beyond is to put our immune systems in the best possible position to kill off any stray mel cells which may have escaped the primary tumor location (it is estimated that a palpable tumor has over a billion malignant cells).... Mel sucks because, unlike some other cancers, it can come back and kill 20+ years later.... So those monthly skin checks looking for any bump, lump, or a 2nd primary tumor (a new case of mel) EVERYWHERE on your body is essential.... Try to educate this new girlfriend and see if she will help examine those locations which are hard for an individual to see on one's own body....OR get hand held mirrors.... Stay on top of this and be disciplined.... Be vigilant but not paranoid....If you're IIA, the odds are in your favor; if in the unlikely event that you have a positive SNB, then understand that Sam Donaldson, the former ABC anchor (may be before your time), is IIIA and is still alive and NED 14 years later (he is in his late 70s now and will likely leave this earth for some other reason when his time comes)

Recommend that you examine taking the following supplements which have been demonstrated to help ward off melanoma metatases in mice studies and in petry dishes involving human melanoma cell lines:

- Curcumin
- CoQ10
- Green Tea Extract
- Resveratrol
- Garlic
- Vitamin D (and get your blood level tested for Vitamin D deficiency)
- Shiitake or Maitake Mushroom extract
- Milk thistle

Try to reduce the sugar intake and sweets to the extent feasible (cancer loves sugar, which creates inflammation in the body which is a pathway for cancer metatases)..... Recommend that you read Dr. Steven Schreiber's "Anti-Cancer: A New Way of Life"... a best seller which came out in Fall 2008... a real eye opener from a Brain Cancer survivor who is also an MD...

Most of all, live your life.... Life is for the living..... Don't shy away from making long term plans for your future at age 26 just because you've had this diagnoses, but also try to live in the moment for none of us are guaranteed anything in this journey of life... Easier said than done I know and something which is still a "work in progress" for myself....

Best of luck Alex and God Bless,

HaoleBoy, (Bob)

Alex14334

Thanks so much for the reply Bob. I had the operation on Friday Morning jsut gone and had the wider incision to remove the surrounding tissue and man is it SORE! but hey its all steps towards getting this thing out. I had one lymph node removed under my right arm which was showing as the only node being drained to following the dye/scan procedure I had the day before.

I feel a hugh relief that the original site was only draining to one place. I had horroble thoughts of this thing infiltrating my neck and groin etc....thinking of the worst case scenario as you do at times! but...just the one node which is now removed.

I have to wait 2 weeks now for the results and as you say, the odds are stacked highly in my favour that its got no further for now and I can jsut get this emotional weight off my shoulders and get on with life as normal (or make the effort to at least) Karen has been so supportive. I've decided that I'm going to take steps in terms of monitoring myself, take pictures of my back etc at set intervals and thoroughly check myself for tell tale signs... not throught paranoia as such but like you say... if theres anything thats worth the time doing, its being vigilant and keeping an eye out for yourself.

I was admitted to the Christie Hospital in Manchester which is the best hospital in the Uk, specifiacally providing cancer treatments. It made me feel so much better being there in a sense. seeing that my level of cancer is relatively low.... and that I've been caught early. some people in there were so ill and yet still so positive and strong. it gave me food for thought!

I'll keep you updated as to my progress... should the node come back as clear I will literally be having a party!!!

Thanks again for taking the time to reply and adding to my growing positivity surrounding this whole thing,

Alex

Alex14334

Hi all,
I had the results of my SNB on monday as well as the test results from the surrounding tissue removed in the wider excision. Both came back negative and I am, for now, NED. I'm absolutely over the moon!! although early days I feel like an enormous weight has been lifted. For two months my life felt like it had been paused and time was just dragging. Thanks to those who replied and took the time to read this thread. I'll keep you updated as to my progress and I hope anyone else reading this with a similar diagnois takes some good from it.

8 weeks in my life....such a short time but boy has it felt like eternity and every emotion possible has been dealt with!

Good luck

Alex

Mimze · New User Joined: 21 Apr 2009 Posts: 9

Hi Alex,

I'm really glad about your news, time to breathe again....I think we all know that "waiting to exhale" feeling!!! Cheers,

Mimze

sean1978

Hi Alex,

I was just diagnosed today with melanoma of a very similar size to yours, and your description of your life very much echoes my own...Will likely start my dream job in the next month or so, wonderful girlfriend, training for an Ironman triathlon - I have to say that my life is pretty good all things considered. Reading about your recent experience has been encouraging. I have yet to find out much specific information about my prognosis and what the next steps are for treatment, but suffice to say I'm a bit scared at this point although cautiously optimistic that it hasn't gotten any further than what has been excised already. We'll see. In the meantime, it certainly puts everything in perspective...30 y.o. and I've got cancer. It's tough to swallow.

Anyway, I'm glad to hear that things have gone so well for you with treatment. Thanks again for posting, as your story has already provided me with some much-needed support. I wish you the best, and I hope to hear more good news from you as time goes on.

Best regards,
Sean

Alex14334

Hi Sean,
Fingers are crossed for you my friend. I know how your feeling and I wouldn't wish it upon my worst enemy. I'm doing fine after the surgery, the scars pretty much closed up comletely now and despite some swelling around the armpit where the sentinal node was removed all seems to be fine. I certainly feel much better minus the stress!! Talk to your girlfriend as much as you can about it all. It certainly helped me to have someone I could just cry on every now and again and tell her about everything that was going through my mind. Couldn't have kept it together on my own.

All the best and I sincerely hope you get the results you desereve,

Alex

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