So it goes...

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5/7/2013 4:40pm
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Replies: 19

My sister made me an appointment to see a dermatologist as she was concerned about my acne. The doctor had a brief look at my face, and as he was leaving the room he asked off-hand if I had anything else I wanted him to look at, suspicious moles, yadda yadda. I said actually, yes - one mole that I kind of had my eye on for the last year or so, on my upper right thigh, that was small but two colors, black and tan. He took a look and said, yep, let's remove this, and before I knew it the nurse was back to prep me for a biopsy. Funnily enough I ended up fainting for the first time ever as he was cutting it off, falling into the doctor and spilling my glass of water all over the floor. I woke up still in my underwear after what felt like a nice nap, and quickly realized "oh wow, I'm still at the doctor's office" - weirdest feeling ever! As I left the office I hoped that that would be the end of it, not wanting to have to face the staff again as "that girl who passed out".

 

Unfortunately, as would be evidenced by my joining this forum, that wasn't the end of it. I got that horrible call that we've all had last Friday. "Beginning stages of melanoma, we're scheduling you for a wide local excision, asap. Can you come Monday?" I took notes, said thanks, and called my husband. Then began the internet research. Oooooh boy. Having had no family history of melanoma and not really knowing much about it, all of a sudden the true nature of my diagnosis hit me like a sack of bricks. Since the nurse hadn't sent along the pathology report and the office had since closed for the weekend, all I had to go on was that I was in the "beginning stages" - did that mean stage I? II? How deep was it? I quickly became versed in Breslow's depth, Clarke level, 5-year survival rates, recurrence, metastasis, and the melanoma's favorite spots in the lungs, liver and brain.

 

Despite my best efforts to remain sane and rational, everything I felt or saw became a death sentence. I'd been feeling light-headed and had more headaches since the fainting - it's spread to my brain. I felt a small bit of pain around my left armpit - spread to the lymph nodes. Pain in my chest - it's spread to my lungs. I had a mild sunburn earlier in the spring - oh god, I am such an idiot. I sobbed into my husbands shoulder, "all I want is to grow old with you". Suddenly our happily-planned life of remodeling our home, traveling, enjoying nature, being together, starting a family - began to unravel. "I am 31 years old, why me, why now?"

 

On Monday I received the report. I will paste it below - and would appreciate any feedback from those more familiar with some of the terms. The doctor cut out a chunk of my leg and sewed me back up, and thus begins the waiting game for the next pathology report. I live in Mammoth Lakes, CA - aka, high-altitude (oops) middle-of-nowhere mountains, so will have to find an oncologist nearby, likely in the Carson City/Reno area. If anyone has an recommendations for doctors in this area please let me know.

 

So, here I am. I'm 31 years old, fair-skinned (Scandinavian ancestry), dark blonde hair and brown eyes, no family history of melanoma, or cancer for that matter, save my paternal grandmother who died of ovarian cancer. I grew up in northern Illinois, and spent summers swimming and playing soccer, but always with sunscreen. I did use tanning beds occasionally in my late teens and early 20s - a few times to prepare for a vacation to Mexico, a few times as it helped clear the acne on my face. Holy hell, if I'd only known...

 

I moved to Mammoth Lakes in 2009, elevation 8,000', and when going on hikes or planning on being outside for any period of time would always wear sunscreen - but if walking to the grocery store or poking around in my garden for awhile, would not. Of course I wish I could kick myself now, but I didn't burn and wasn't out for "long", so thought it was okay. I had a friend randomly stop over early spring, and as it was one of the first nice days of the season, we sat outside to chat. As it happens, we chatted for longer than expected, and I burned mildly on my right shin. Idiot, idiot, idiot...!

 

Here are some of the questions that I still have:

- Should we consider moving to a lower elevation? We love living here, but it's not worth my life.

- Does anyone have a recommended oncologist/hospital in the Carson City or Reno area?

- Besides staying inside or in the shade between 10-4, covering up, wearing sunscreen, exercising and eating healthily, does anyone have any further recommendations for lifestyle changes?

- My husband and I are going to create a full body map of my moles and spots, complete with pictures and measurements, to augment checkups to the derm/oncologiest. Is there anything else we should be doing?

- Should I find a counselor/therapist? I am still terrified, and don't want to lean on my husband too much.

- Will I be able to become pregnant if I have to go through any further treatment? Does pregnancy increase the likelihood of the cancer recurring?

- Will I ever feel normal again?

 

Thanks and much love to you all.

 

Pathology report (original biopsy):

Microscopic diagnosis: Melanoma

Microscopic description: The biopsy shows an asymmetric and irregular proliferation of single and nested atypical melanocytes at the dermal-epidermal junction. The single and occasional nested atypical melanocytes are present above the basal layer of the epidermis. The underlying papillary dermis shows mild dermal fibrosis and chronic inflammation.

Gross description: Received in formalin is a fragment of tan tissue measuring 1cm. Entirely submitted.

Comment: The melanoma is mostly in-situ with occasional atypical nests are noted in the papillary dermis with an approximate depth of 0.12-mm. These atypical nests appear connected to the overlaying epidermis in some sections. The neoplasm extends to the margins. A definitive re-excision is recommended.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Janner - (5/7/2013 - 5:25pm)

First off, sorry you have to come here.

Second, I might request a second opinion on the pathology report.  The only final diagnosis I see is "melanoma".  In order to stage things, you need more information.  If the lesion was labeled in situ, you're good to go.  But if the lesion was considered invasive to .12mm, it would be nice to have more information based on staging criteria i.e. mitosis.  Mitosis determines if this is stage IA vs stage IB and I'd expect to see it mentioned.  Make sure this was read by a "dermatopathologist" - a pathologist who specializes in the skin.

 

Should we consider moving to a lower elevation? No.  Live life.  This damage may have occurred during your youth and only came to light now.  I live at 5000' and would never consider moving just for melanoma.  Find ways to work WITH melanoma but do not let it run your life or it has already won the battle.

- Does anyone have a recommended oncologist/hospital in the Carson City or Reno area?   You don't need an oncologist, you just need a dermatologist.  Oncologists treat active disease and this is such a low risk lesion that there is nothing they could offer you other than another set of eyes looking at your moles.  Some oncologists won't even see early stage patients.

- Besides staying inside or in the shade between 10-4, covering up, wearing sunscreen, exercising and eating healthily, does anyone have any further recommendations for lifestyle changes?  No.  Do whatever makes you feel in control, but you're really covered the basics.

- My husband and I are going to create a full body map of my moles and spots, complete with pictures and measurements, to augment checkups to the derm/oncologiest. Is there anything else we should be doing?  Watch for CHANGE, that's the most important factor in my book.  Please understand that only around 8% of the melanoma population EVER have another melanoma primary.  It is always good to pay attention, but you are probably not "destined" to have another.

- Should I find a counselor/therapist? I am still terrified, and don't want to lean on my husband too much.  Up to you.  It takes a little while to get over the shock of things, but this is truly VERY LOW RISK.  It takes a while to come to terms with "cancer" and "good prognosis" as the two don't seem to go together.  The more you research on the internet, however, the higher your anxiety will likely go.  After working with many newly diagnosed over the years, I can state this with some certainty.  If you go to my profile (click on my name), you can email me and I can put you in touch with a private email group for stage 0/1 melanoma warriors.  We've all been where you are and know what you are going through.  More realistic than many sites for newly diagnosed early stage warriors.

- Will I be able to become pregnant if I have to go through any further treatment? Does pregnancy increase the likelihood of the cancer recurring?  There is no further treatment necessary for your lesion.  The surgery to get wider margins is all that is needed.  Did this mole come up while you were pregnant?  If this mole was unrelated to pregnancy, more than likely pregnancy is not an issue.  You will want to keep a good watch on your moles if you become pregnant, however, as moles often change during pregnancy and it's best to keep on top of things.  Some doctors recommend waiting 2 years to become pregnant as that is the most likely time for a recurrence, but your lesion is so low risk that I'm sure most docs wouldn't even recommend that.

- Will I ever feel normal again?  Yes.  The first year is the toughest but it gets easier with time.

mishcakes - (5/7/2013 - 5:53pm)

Hi Janner,

 

Thank you for your quick reply, it is much appreciated.

 

- The pathology report didn't mention any staging. I was under the impression that the path report of the WLE would contain that information? The only other thing on there besides by name, DOB, etc was at the top it has "Clinical Diagnosis: Rule out: Atypia". The lab report was signed by Manjunath S. Vadmal, MD and ordered by the LA Laser Center.

To whom would I request a second opinion?

 

- Regarding the oncologist, the dermatologist's office has already called and is setting up an appointment for me with an oncologist in Carson City next week. Might this be because they think it is an active disease? Regardless, my husband and I do have an appointment with the original dermatologist on June 10 for us both to have a full-body check.

 

- No, I was not/am not pregnant when this mole came up.

 

- I will email you to get in touch with this group, thank you.

 

Janner - (5/7/2013 - 6:46pm)

Pathology reports don't typically "stage" someone as they only report what they see at that moment and don't know the "whole picture".  Doctor's do staging.  However, mitosis is a factor not mentioned and that is a current staging criteria.  I suspect that your mitosis is 0 (good) as things that don't exist can be left off reports, but I'd want to know for certain.  Ask your derm if the pathologist is a dermatopathologist and/or if he could send it to another for a second opinion.  Right now, you are either stage 0 or stage IA but just "barely" 1A.  The wide excision is unlikely to change anything.  Most often they do not find any residual disease and you will be staged based on the first biopsy report.

Some derms refer everyone to an oncologist especially if they don't see many melanoma patients.  This oncologist is unlikely to be a melanoma specialist - Carson City isn't that big.  You do not have active disease, you have a very low risk lesion.  DON'T LET YOUR IMAGINATION RUN AWAY WITH YOU.  In my mind, an oncologist is a big overkill in your case.  (I've been stage IB for 21 years with three primaries and have been around the blocks a few times).  But if it makes you feel better at this time to see one, go for it.  They will have nothing to offer you, though.  There is no treatment other than surgery for stage 0,1, or 2.  All an oncologist will do is talk to you and maybe look at your moles for another set of eyes.  I, personally, have found my 3 primaries and do not rely on any doctor to find melanoma, I find moles that change myself and these are what we biopsy.  Learn to watch your body for change and be proactive that way.  You know your body best.  One of my friends in my email group is stage I for many years now - she is also in the Reno area (Gardnerville, I think).  I'm sure she'd be happy to talk with you as well about what's available in that local. 

Anonymous - (5/7/2013 - 6:38pm)

might also be good to get path report info on growth phase (radial vs vertical) and regression present or absent

washoegal - (5/7/2013 - 7:23pm)

I'm not sure that seeing an oncologist in Carson City will be very fruitful.  I live between Carson City and Reno and I travel to Los Angeles to see a Melanoma Specialist.  The closest Melanoma Specialists are either Las vegas, San Francisco or Los Angeles.  However, I can say that I did get a very good reading of my slides here in Carson City as they were read the same here as in Los angeles so at least that might put your mind at rest.  Either way, in-situ (stage 0) or stage 1 your progonosis is excellent and you can basically go on with your life from here.  Just find yourself a good derm. and practice sun safety. 

Good Luck,

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

mishcakes - (5/7/2013 - 7:33pm)

Thank you Mary! I think I'll visit an oncologist at least once to, as you said, have him or her read my slides for a second opinion. I currently have the choice between Dr Jorge Perez and Dr John P Kelly, are you familiar with either?

 

Can you recommend a good dermatologist in your area? The one I went to seems lovely but more into botox than cancer, and I'd prefer someone that focuses on the medical rather than cosmetic. Or is this fairly typical of dermatologists to do both?

mishcakes - (5/7/2013 - 8:20pm)

It appears that the doctor who created the pathology is a dermatopathologist. Yay.

 

Here's his USC profile:

http://www.keckmedicalcenterofusc.org/doctor/bio/view/72499

mishcakes - (5/7/2013 - 8:25pm)

... and I've left a message with his office for hiim to call me back, and I'll ask him about growth phase, regression and mitosis.

 

Thanks all for your help.

michelleaudie - (5/8/2013 - 8:04am)

hi

sorry to hear about your diagnosis, had exact same as you a couple of weeks ago, had wide cut around where the mole was (hole in my leg), but atleast its out now! In Situ as I understand it means Stage 1 melanoma, depending on breslow depth ect. I had the biggest shock in my life when I received my phone call, as I have two little girls and one does not know what to expect! After a blood test S100B it was said that im in margins so it does not seem like i have any other melanoma anywhere else. however, i had a mole removed during last year by my gineacologist whilst I went for my C-Section - she never gave me the results - the path report stated that further clinical corrections is needed and she never phoned me to tell me that, (seems she didnt remove it all that well) and it has started growing back, so im heading to Dr this afternoon for my 6th mole removal in 4weeks :( i just hope and pray that melanoma has not recognised this spot as a nesting place)

 

im from SA,and just wanna let you know, you are in my thoughts and prayers! keep strong and good luck for everything on your path!

michelleaudie - (5/8/2013 - 8:05am)

hi

sorry to hear about your diagnosis, had exact same as you a couple of weeks ago, had wide cut around where the mole was (hole in my leg), but atleast its out now! In Situ as I understand it means Stage 1 melanoma, depending on breslow depth ect. I had the biggest shock in my life when I received my phone call, as I have two little girls and one does not know what to expect! After a blood test S100B it was said that im in margins so it does not seem like i have any other melanoma anywhere else. however, i had a mole removed during last year by my gineacologist whilst I went for my C-Section - she never gave me the results - the path report stated that further clinical corrections is needed and she never phoned me to tell me that, (seems she didnt remove it all that well) and it has started growing back, so im heading to Dr this afternoon for my 6th mole removal in 4weeks :( i just hope and pray that melanoma has not recognised this spot as a nesting place)

 

im from SA,and just wanna let you know, you are in my thoughts and prayers! keep strong and good luck for everything on your path!

mishcakes - (5/8/2013 - 1:10pm)

Thanks Michelle! You are in my thoughts too, I hope that they cut out all of your melanoma and you never have to deal with it again!

Intersting on the blood test, I haven't seen that mentioned as a test to take here in the US.

 

Much love!

mishcakes - (5/8/2013 - 1:18pm)

Update on the path report: the very nice dermapathologist called me back and confirmed:

in-situ (mostly radial), not much vertical
no regression
no mitosis

 

washoegal - (5/9/2013 - 1:42pm)

I hope you read this...

Congratulations on your good outcome.  I see Dr Tack at Carson Dermatology.  I really like him!  There is quite a wait to get in though. 

Mary

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

mishcakes - (5/9/2013 - 6:27pm)

Thanks Mary! I'll check out Dr Tack.

mishcakes - (5/9/2013 - 6:52pm)

Called and have an appt with Dr Ruth Adams. Thank you for the recommendation.

 

washoegal - (5/9/2013 - 8:09pm)

Glad you have an appointment.  I have only seen Dr tack, I hope you like Dr Adams.

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

mishcakes - (5/11/2013 - 11:15pm)

Hi friends,

The WLE came back all clear. I've let out a tentative sigh of relief, but know there's still a long road ahead, and I'm still feeling tense. I have a derm appt in a couple of weeks (on my birthday of all days!) and will have a full body check and ask the poor doctor the million more questions I have.

Thanks all, and please be in touch if you're ever in Mammoth Lakes. I'd love to buy you a coffee (or beer, if that's your style :)

mishcakes - (5/11/2013 - 11:53pm)

And actually, a couple more questions for the group for those who are still listening to this thread - I never got a "stage" from the dermatologist or the pathologist. I'll copy the second pathology report from the WLE below. I've self-staged myself at 1a but not sure if this is the smart thing to do. I've also yet to get a second opinon on both the original biopsy and the WLE but think I'll ask my derm about that in a couple of weeks. Also the report mentions "focal ulceration" - is this different from the "other" ulceration that is used to stage the cancer?

 

Microscopic diagnosis: Scar and inflammation, no residual melanoma seen.

 

Microscopic description: The epidermis with focal ulceration and dermis and subcutaneous soft tissue with fibroblastic and capillary proliferation admixed with variable amount of chronic and acute inflammatory cells and giant cells consistent with a previous biopsy site is noted. No residual melanoma seen.

 

Gross description: Received in formalin is a fragment of tan tissue measuring 2.2x1.7cm. The specimen was serially sectioned and entirely submitted.

 

Comment: The peripheral skin margins and deep subcutaneous soft tissue margins are examined in detail in this wide excision specimen and are free of melanoma.

mishcakes - (5/11/2013 - 11:59pm)

And actually, a couple more questions for the group for those who are still listening to this thread - I never got a "stage" from the dermatologist or the pathologist. I'll copy the second pathology report from the WLE below. I've self-staged myself at 1a but not sure if this is the smart thing to do. I've also yet to get a second opinon on both the original biopsy and the WLE but think I'll ask my derm about that in a couple of weeks. Also the report mentions "focal ulceration" - is this different from the "other" ulceration that is used to stage the cancer?

 

Microscopic diagnosis: Scar and inflammation, no residual melanoma seen.

 

Microscopic description: The epidermis with focal ulceration and dermis and subcutaneous soft tissue with fibroblastic and capillary proliferation admixed with variable amount of chronic and acute inflammatory cells and giant cells consistent with a previous biopsy site is noted. No residual melanoma seen.

 

Gross description: Received in formalin is a fragment of tan tissue measuring 2.2x1.7cm. The specimen was serially sectioned and entirely submitted.

 

Comment: The peripheral skin margins and deep subcutaneous soft tissue margins are examined in detail in this wide excision specimen and are free of melanoma.