Stage 4?

Posted By
1/13/2012 3:00pm
View other posts by
Activity
Replies: 10

HI All-

Some of you may have read my posts in the past. Please bear with me on this...I am very confused and appreciate all the support. I have finally been told that I am Stage 4. Confusing part....here we go....in April 2011 I had a bump removed from my right cheek that my derm thought was cyst. Well it mas melanoma and pathology said it was meatstatic melanoma. My derm was shocked to say the least as he has never noticed anything on my skin. He was concerned obviously but felt this was odd case.

I found a specialist and he did protocol of getting pathology slides and ordered WLE of cheek and SLNB. Surgey path came back with clear margins (diameter was 5.7mm) and SLNB was negative. He had felt intially that this wasn't metastatic but rare presentation with no epidermal component. I since have had numerous moles removed...a few dysplastic but mostly benign. I have had a chest/neck, abdomen/pelvis and brain MRI in Nov/Dec 2011....all negative, though there was a spot on liver where I had an MRI and it was determined to be a hemangioma. There was also a cyst in sinus area that was of no concern. I went to another specialist as I am not comfortable...and was told today that I am stage 4 since there was no epidermal component. Doc feels I'm low risk for recurrence but I will follow stage 4 treatment protocol without any immunotherapy/chemotherapy as I am about 8 months out for surgery and there is no benefit. The pathologist is ordering up unstained slides to do own testing. He also wants me to do annual eye exams and have a mucosal exam. I'm not sure about my prognosis and wonder if anyone out there has had a similar experience. Thanks.

 

Josh

Let's work for better treatments....for a cure!!!!

washoegal - (1/13/2012 - 3:56pm)

I would be very confused too.  The best way to sort it out is to look at the pathology reports.  I had to go bad to my old ones and look at the notes below to see what I should say.  In my first one it says Malignant Mel where they removed my mole.  In the second one where they did the SNB it says Metastic Mel.  If by chance, there was an initial tumor that your immune system fought off then the one on your check could be a metastasis.  Depending on the location of the unknown tumor, you would either be stage 3 or 4.  But the doc is being conservative and also allowing you access to more protocols, that's a good thing!

Don't worry about the statistics/prognosis.  With things advancing as fast as they are now history really doesn't really make much sense.  Sounds like at this point you are NED and looking pretty good. 

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

JoshF - (1/13/2012 - 4:13pm)

Thanks for response...I know very confusing! I have heard that only 1-2% are unknown primary...my doc said probably closer to 5%. They are unsure on all of that....I had Woods Blacklight to look for regression...nothing. Therefore, they are going with Stage 4...aggressive follow up...scans every 3 months. Keeping the faith...need to look after my little ones!!

Let's work for better treatments....for a cure!!!!

washoegal - (1/13/2012 - 5:21pm)

I get scans every 3 months for stage 3, a lot of people do.  Gets tiresome after a while but it's worth it.  On the other hand the scans may show you more than you ever wanted to know.  I am sure you have read all the false alarms on this board.  I have 2 presumed liver cysts (not growing).  I have what appears to be a goiter in my throid but I have asked to have a needle biopsy on my next visit because more I read BRAF positive (which I am) can lead to thriod cancer and the "goiter " has grown between scans so even if the Onc isn't concerned I'd like to know for sure.  Seems like nothing is black and white.  But we all try to go on and live our lives, being thankful for what we have.  20 months NED for me!  YAHOO.  If nothing else, this has taught me not to sweat the small stuff.

Mary

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

Rebecca and Bob - (1/14/2012 - 8:41am)

Josh,

 

My husband just turned 40 when diagnosed with amelontic melanoma which is skin colored and perfectly round not even close to the typical description of melanoma. He was stage III when diagnosed at John Hopkins and they sent him to NIH for clinical trials for resected Stage III (SNB positive one node) melanoma and he did a vaccine for a year. I really believe they are getting better with the vaccines and future treatments. It may be worth your while at least to research any vaccines even though your NED and discuss with your oncoloist. When my husband did advance to Stage IV they moved quickly to get him into treatment and we were already in a clinical trial center so there so was no waiting for the latest treatments.

I'm not saying your going to advance, but just do your research. My husband has been Stage IV for 4 years, NED for over 2 and we hope to keep it that way. They are watching him closely still on 4 month scans but we feel if they did see anything then at least we are on top of it.

Good luck!

 

Rebecca

Believe

JoshF - (1/15/2012 - 12:59am)

Hi Rebecca-

Thanks for the response. I will definitely look into vaccines. My oncologist felt that being 8 months since surgery there is no benefit starting me on interferon. He wants to be extremely aggressive with scans every 3 months but has stated he feels I'm low risk for recurrence. I just don't understand as he has also said melanoma is the trickiest cancer out there and follows no set pattern. It all seems contradictory to me and I read so many terrible stories about people being NED for years and then one day...METS to brain or liver... He understands my fear and says take the monkey off my back and leave it with him. Easier said than done. I pray every night to find a vaccine, treatment etc... to alleviate people's suffering with this terrible disease. I think the unpredictability and anxiety that come with it are horrible as well. Thanks again...I always like hearing from people and your husband's story is encouraging. You and you're husband are in my prayers.

 

Josh 

Let's work for better treatments....for a cure!!!!

Jessmoon - (1/18/2012 - 3:32pm)

Josh,

I believe you contacted me this past fall after my husband was diagnosed with melanoma. He had a similar presentation.   He had a small lump on his leg that continued to grow so it was removed.  Three pathologists have diagnosed it as metastatic melanoma because there was no melanoma in the epidermal layer.  Our oncologist recommended Interferon Vs. Yervoy.  We chose to get a second opinion and went to Mayo Clinic.  The pathologist there confirmed the diagnosis (and has seen primary dermal melanoma in the past-he didn't think this was a primary dermal).  Mayo recommended starting Leukine.  My husband has been on Leukine since October and doing well.  Scans last month were normal. I did ask our oncologist what stage my husband is because he has not had any positive lymph nodes and since we don't know where the primary lesion is, he hasn't had new lesions pop up away from his primary which would indicate metastatic.  Unfortunately, he wasn't able to answer my question-Mayo Clinic didn't stage him either.  From the research i have done, with this type of presentation, he would be considered stage III.  Mayo indicated a 50% chance of recurrence so that is why we chose treatment.  He has had no side effects from the Leukine and is able to live a normal life. 

 

Jess

JoshF - (1/18/2012 - 5:10pm)

Jess-

It's very odd isn't it? I don't understand how the cancer would get there without getting into lymph node. Did they have any explanation of what could have occured? My oncologist thought ttreatment wouldn't have been beneficial and he felt it was primary.He also felt I was low risk recurrence. Sometimes I don't think they know. I know my pathology report was comprable in some points to what I have seen on studies done on primary dermal melanoma. The nests, no epridermal component, tumor necrosis etc.. But obviously I'm not an expert just a hopeful cancer patient.

I had gone to see another specialist in November who said he believes it is metastatic and more than likely my body had an immune response to it. He wants to do more extensive scanning other than the chest and neck which my 1st oncologist did in November, so I had more scans in December which after a scare with a spot on the liver (which they deemed was a hemangioma after an MRI) all came back clear.Though he said he is treating it as Stage 4. Being that I am so far out he didn't think there was any treatment that would be beneficial so I am wait and see. It has been about 9 months now. I'm nervous because I don't know who to believe...obviously I'd like to go with it being primary but presentation is so rare. Did Mayo saychance of recurrence drops after time? How big was leison they took out of his leg? Glad he is doing well on Leukine.

Josh

Let's work for better treatments....for a cure!!!!

Jessmoon - (1/19/2012 - 11:37am)

Josh,

 

Unfortunately I work in the medical field (I'm a nurse practitioner), so I know some things are never cut and dry. I remember our oncologist saying that we may go to 2 or 3 different oncologists and each one may have a different treatment plan.  It's even more difficult when it comes to Melanoma, because nobody really knows what the best treatment is.  Until 2011, there hadn't been any new medications approved to treat MM. 

 

Our oncologist mentioned that MM can spread through the lymph nodes or through the blood (veins/arteries).  He mentioned it is possible that my husband's MM started somewhere else, and traveled through his blood to his left shin.  Although cancer usually spreads from our feet to our head so possibly his primary was in his left foot...?  I was hopeful when we went to Mayo that the pathologist would indicate that he had primary dermal melanoma, because obviously the outcomes with that diagnosis are much better. I think it is very likely this is what you have based on your pathology report and the fact that your original oncologist diagnosed it as that. 

i believe the chance of recurrence does decrease with time.  My husband is going to have CT of chest and abdomen completed every 3 months for 2 years per Mayo's recommendation.  Unfortuantely, I have read many stories on this site where patients go years 5, 7, 10 years without recurrence and MM comes back.  I'm not sure I'll ever feel like we are in the clear.  I do not have his pathology report in front of me, but his lesion was approximately 6-8 mm large. 

Are you following the recommendations of the second specialist you saw?  How often will you have scans completed?

 

Jess

JoshF - (1/19/2012 - 12:26pm)

 

Jess-

Very eerie similiarities between us. My aunt is also in medical field as nurse prac. and now runs a physicians office. She tells me she really believes it was primary and all is well...but I'm her nephew so she is obviously biased, although she has been one not to sugar coat anything in the past though this time we're talking about the big "C". I guess as bad as this sounds I wish I had been offered some kind of treatment. They intially discussed Leukine and Interferon but that time has passed.

So let me ask you as I have asked just about everyone else. In the instance that your husband or myself did have the melanoma travel into blood or lymph system, wouldn't the cancer cells still be floating around? I don't feel as if I ever get a straight answer from doctor. My PCP is probably the best as he says you could have had major immune response and destroyed primary and eventually anything "floating" around. He says that is good sign as your body is recognizing malignant cells and attacking them. My response is...won't those cells try to come back? My pathology says very little about mitoses other than there are numerous mitoses scattered in tumor consisting of atypical cells. The diameter of tumor was 5.7mm. My oncologist said that's the size of a small pea and he isn't concerned with mitoses that was scattered....I'm told it's all semantics. Yes, but these are our lives we're talking about...don't want it coming down to semantics.

This spring will be one year for me and I was told chance of recurrence is cut in half. My oncologist told me that there is never a guarantee but the recurrences after a long period of time is rare. I do read these stories and have made remarks to him and he said look at overall...probably a small percentage. Which might be true but those are the stories we hang on.

I am going to follow recommendations of 2nd oncologist. It is far more aggressive and given the situation I am more comfortable with that. He is very well know in melanoma community and heads up RushUniversity Cancer Center in Chicago. He has also written a book, "The Melanoma Book"...Dr. Howard Kaufman. Now tell me if I'm crazy but I still plan on seeing other oncologist as well. Dr. Jon Richards out of Advocate Lutheran General. He has been after melanoma for close to 30 years. He is far more personable that Dr. Kaufman and he saw me through intial scare etc.. and thinks it primary where Kaufman disagrees. My thought is it can't hurt to have 2 experts looking after you. So CT scan of chest/neck & abdomen/pelvis every 3 months for 2 years and brain MRI every 6.

Last question...I know I'm very long winded today. Did the by chance do a Woods Light Test on your husband? When I went to Rush the dermatologist there who is also been after melanoma for over 30 yeaars said in many cases they can find a regressed primary by using this UV light in a pitch black room. He did exam on me...nothing! He said roughly 70,000 cases of melanoma are diagnosed annually and he believes that maybe 3,500(about 5%) never find a primary. Don't like being an oddball...thanks for all the communication. Yourhusband & family are in y thoughts and prayers. Praying that when we are in our 60's-70's we'll still be talking about this!!!

Josh

Let's work for better treatments....for a cure!!!!

AnnG - (9/18/2013 - 12:15pm)

I have been reading up on your case as mine is so similar. Initial diagnosis July 2013 cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins.

Local oncologist recommends Leukine. Second opinion Dr Kirkwood at UPMC recommends participation in study comparing Interferon, low/high dosages of Ipilimumab.

Now I have discovered on this forum and others that perhaps I had primary dermal melanoma,  

Looking for any information. Thank you