So Where do I start
Home › Forums › Melanoma: Newly Diagnosed – Stages I & II › So Where do I start
- This topic is empty.
-
AuthorPosts
-
January 20, 2013 at 4:29 pm #20950
waspkfd
ParticipantThanx for this great forum!! Ive been reading it the last few days.. To start off im a red headed light skinned
👿 blue eyed lol.. already stacked against me…I also have work construction the last 25 years YES OUTSIDE lol..It all started about 8 weeks ago, I noticed a pimple like bump on my right arm between elbow and sholder,, now I was not blessed with great skin so the pimple was no concern to me.. as the weeks went by im thinking why wont it pop or go away?? another week goes by and it starts turning dark blue or black and is raised up at this point, so I call a dermatologist and have an appt the next day, she removes the bugger and sends it in and says we should know something in 3 to 4 days, well I get a call at work the very next morning and she says I need to come in right away ,, told her she can tell me on the phone well you guessed it MILIGNANT MELANOMA…………………………………….. So I get in the next day and shes says there is concern because it grew so fast and so tall and she tells me lots of options but says be honest be prepared for the worst ,,,, So of Corse I go right to the internet an geta lot of doom and gloom info on the net…………….
So I get set up with a surgeon the following week and the surgeon says well your young(44) and health and should be able to beat this and says the will remove about 6″ of skin to remove all the melanoma and orders a head to toe PET SCAN…..(last Friday)
So the dermatologist has me freaked out where im in tears for almost a week and the surgeon says I should be able to beat this just fine????????????????
SO here I am , im taking this journey with you
here the report I got after they biopsy the MM
superficial spreading melanoma, clark level at least IV , at least 3.50 mm thick with ulceration ( at least T3b) , margin involved, skin of right arm
clark level IV
breslow thickness 3.50mm
ulceration YES
regression NO
mitotic rate 12/12mm
vascular/lymphatic invasion NO
lymphocytic tumoral invasion: non brisk
microsatellitosis NO
vertical growth phase YES
AJCC pathologic stage atleast T3b
please if any thought let me know… like I said one says big trouble ahed and another say I should be fine……..
January 20, 2013 at 6:19 pm #58653Catherine Poole
KeymasterWelcome to our forum. We are here to support you with the best knowledge available and the more you know, the more empowered you will feel. I’m sorry if I missed it, but did you have a sentinel node biopsy? Any positive nodes? It is true that you are at high risk for recurrence because of your depth of lesion, 3.5. However, I would first get a second opinion on that pathology by an expert. Then I would go directly to a melanoma center of excellence to find out about clinical trials and options you might have for adjuvant therapy (therapy that kills any stray melanoma cells.) Or do that all in one fell swoop. What part of the country do you live in? A sentinel node biopsy will diagnose you further and is a much better tool than PET scans at this juncture. When you are in the hands of a melanoma expert (of which there are very few) you will be able to relax a little more. Do not hesitate to ask for help with your anxiety, exercising and meditating will help too. Let us know more.. January 20, 2013 at 7:45 pm #58654waspkfd
ParticipantHi CATHERINE you asked ” I’m sorry if I missed it, but did you have a sentinel node biopsy? Any positive nodes? “
Thanx for your fast response!!! I did not have the node biopsy.. she said they would do that when the take the skin around the MM area???
Im in IOWA..ive searched for the center you mentioned but my internet is having problems right now lol
The hospital Im going to has a cancer center
IM so confused in all of this… who would I go to to reread the report, is there something Im not being told? IM taking it 1 day at a time,, surgery is on Thursday
Thank You again for you fast response!!!!
January 20, 2013 at 10:14 pm #58655Catherine Poole
KeymasterOk, so after the Sentinel Node Biopsy you will know more about your staging. I would get second opinions at a leading melanoma center (not just a cancer center) on this pathology too. Iowa is a state with few melanoma centers. Check out resources above in for a list of centers. But first you might want to read up on the sentinel node biopsy. You can do that from our home page. I will get you the link……BLUEhttp://www.melanomainternational.org/melanoma_info/sentinel_node_biopsy.html Also, be sure to go to the Newly Diagnosed area above in
as well. Keep in touch, there are lots of kind folks here to support you.BLUEJanuary 20, 2013 at 11:13 pm #58656waspkfd
ParticipantThanx again!! hmmmm do you see anything odd in my report? any reason the dermatologist and surgeon seem to have different view ( or am I just reading into something that’s not there?)..
If you see something please give it to me straight,, I also read the links you provided over the last couple days,,
also am I posting in the correct forum? not sure what stage im at….
January 21, 2013 at 1:27 am #58657Catherine Poole
KeymasterYou will be staged after you have the sentinel node biopsy. There are elements of your pathology that would indicate a higher risk for spread, but mainly the depth is the number one prognostic indicator. It was on your arm which can be better than having it on other parts of the body. You will be staged somewhere between II and III depending on the SNLB. Don’t worry about that here..be sure to have a support person with you at the doctor’s appts. and your procedure. It is always better to have support! You can always write me privately as well: cpoole@melanomainternational.org Take care!
January 21, 2013 at 11:27 am #58658waspkfd
ParticipantTHanx again CAT!! did I mention this did not arise out of a mole , it just appeared as a small pimple strange huh??
ANyway surg in on Thursday so I hope to find they got it all( hopefully) very strange how all this come almost overnight all I can think about is how my wife and kids will be protected if I end up in bad health..
I have never had to come to grips to something like this really scared about Insurance( I do have insurance) afraid of being cancelled, about being able to pay the bills and about my job…….. WOW so many unknowns ,, Thank you once again… I know there are people on here that need your help than me, so I will try not to bug til after surgery
.. HAVE AN AWESOME DAY!! and see ya when I get back!!!!!January 21, 2013 at 12:24 pm #58659Worrywart
ParticipantI’m sorry you’ve been diagnosed with melanoma. Take it one step at a time. First step – node biopsy to stage you. The Dr’s concern is with the rapid growth which could indicate an aggressive tumor. The mitotic rate indicates the growth and 12 is high, but I’ve seen others with high mitotic rate and they are doing fine, so you are not alone. Good luck with your surgery and scans and please keep us posted. January 21, 2013 at 1:06 pm #58660Catherine Poole
KeymasterAs far as I know, the insurance company can’t cancel on you! Part of the new Obamacare program is to allow folks with preexisting conditions to be covered. But as far as I know there shouldn’t be a legal reason to cancel you. I am sure your head is spinning with these worries, but try to take deep breaths and a day at a time. It does sound like maybe your melanoma was amelanotic (didn’t have the usual dark color to begin with). So it may not have been noticable at the beginning. But try to live in the present moment, you can’t change the past and you can’t control the future. It is tough to do, but it will help relieve some anxiety. Don’t worry about posting here too often. We have a wonderful group of folks here besides myself to help you. January 21, 2013 at 10:33 pm #58661waspkfd
ParticipantHEY CAT!!! Just got a call from Surgeon ,, she said the pet scan came back clean and seem to be contained to the original site…
also when looking at melanomas my look more like the
😈 NODULAR type……..thanx again for all your help..see ya again on Thursday
January 22, 2013 at 12:20 pm #58662Catherine Poole
KeymasterI think you should ask for another opinion on your pathology to verify it is nodular. Nodular can be more aggressive and that is why it seemed to crop up overnight. Let us know how your sentinel node biopsy goes. Then lets discuss some of the melanoma centers of excellence that are near you. It is well worth it to get their opinion. I would also ask them to check your original tumor (melanoma lesion) for the BRAF mutation. This can help decide future therapies if needed. January 23, 2013 at 11:11 pm #58663johnbil
ParticipantHey there. Good luck on the surgery Thursday. I just had my WLE and Sentinel Node Biopsy last Friday. They biopsied both armpits, and took 2cm margins off my back, so sleeping/sitting is a hassle, but overall, everything is healing well. Like you, I had a fast-growing bump (on my back). Barely noticed it until around Labour Day, when it started to bleed. Didn’t heal, and by October, I had it removed. Figured that was it. Didn’t know anything about melanoma really, and am otherwise super healthy, and very active (cycling, running, etc). Three weeks later, I was at the hospital, and they gave me the news: 12mm deep nodular melanoma, mitotic rate of 12, ulceration, etc. Not great, but still felt great. CT scan and blood work were both clean. Now waiting on the results of the biopsy, for staging.
So, it’s been a 3-month process, and still don’t 100% know what to expect. I guess my message is: even though you’re going in for surgery Thursday, you won’t know resultsright away, so just hang in there. The waiting is the worst. They can freeze the nodes, and check right away, but I understand that that method is less reliable, and so they take longer to report back, than we’d like, ha
All the best
John
January 24, 2013 at 3:31 am #58664Eos99
ParticipantWhat good advice about the need for patience re: path timeframes for waspkfd. Very kind of you too, especially as you’ve been through a lot in a short period of time. Best wishes for the most smooth recovery possible. January 26, 2013 at 12:12 pm #58665waspkfd
Participanthey thanx CAT!!! John and 99 great advice… Had surgery Thursday morning,, Got them talked into letting me go last night,, Had a great surgeon and awesome nurse’s.. They all treated me great and with great care!!! The removed I believe 8 nodes to check,, and also the melanoma site,, said she was able to do a flap instead of a skin graph,, The WLE site has very slight pain.. BUT where they took the nodes its still very painful.. they gave me some pain pills, it seems to help a little BUT COFFEE seems to work better lol..
they hope to get the results by Wednesday, I will know more by then,, thanx again for all your help!!!
January 26, 2013 at 12:33 pm #58666cohanja
ParticipantGlad you’re recovering. Wow, 8 nodes? That seems like a lot for a SLNB. I had 2 nodes removed. I’ve heard of people having 2, 3, etc. . . 8 is the highest I’ve heard of.
-
AuthorPosts
- The forum ‘Melanoma: Newly Diagnosed – Stages I & II’ is closed to new topics and replies.