Adequate Margins?

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3/16/2012 5:10pm
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Replies: 25

Hi,  Will try to avoid sticking my foot in it- as I have with some previous posts under "Overtreatment?"....  First primary, a "lentigo maligna melanoma", was excised two years ago.  No recurrence- that I am aware of.     Second primary "superficial spreading malignant melanoma" I've been tracking 8 months, located 20 cm from the first primary, was excised three days ago.    Pathology received today is neither entirely innocuous nor very serious. Breslow, mitotic rate and Clark are all "ok" or better.

QUESTION:  What are "adequate margins", given the diagnosis/description below?  ("very close to the lateral margin...very narrow margins..narrowly excised")

DIAGNOSIS:  "Malignant Melanoma, 0.74mm Breslow's Depth, Clark's Level III.   The lesion has been completely excised, although it extends VERY CLOSE TO THE LATERAL MARGIN.

DESCRIPTION:  There is an asymmetric proliferation of atypical melanocytes arranged in nests and singly at the dermoepidermal junction as well as above it, with extension into the papillary dermis.  The lesion measures 0.74mm in depth and would be classified as Clark's level III, as the papillary dermis is filled and expanded.  There is pigment deposition throught the lesion.  There are less than one mitoses per millimeter squared.  There is brisk tumor infiltrating lymphocytic inflammation.  There is no evidence of ulceration or lymphovascular invasion in the sections examined.  The findings represnt superficial spreading malignant melanoma, which has been completely excised, albeit WITH VERY NARROW MARGINS.   One of the sections also shows small nodular masses of basal neoplastic cells with nuclear pleomorphism attached to the basal layer and surrounded by a loose fibrous stroma and mild inflammation in the superficial dermis, findings typical for a superficial type of basal cell carcinoma.  This has also been completely, BUT NARROWLY, EXCISED.  

Surgeon's recommendation:   Re excision, increasing margins by 1 cm each side.

I requested of pathology:  Quantified definition of "VERY CLOSE TO THE LATERAL MARGIN....NARROWLY EXCISED....VERY NARROW MARGINS".

Response to "Overtreatment?" post was overwhelming.  And enlightening, particularly from Janner, JerryfromFauq and Minnesota.  Many thanks!   I would much appreciate your opinions about "Margins?", in light of the pathology.   Thanks very much!  

 

The Only Good Legend is a Dead Legend.

Janner - (3/16/2012 - 8:39pm)

1 cm margins, as described in the pathology, are the standard of care for anything under 2mm.

Janner

Bob B. - (3/17/2012 - 1:15pm)

Thank you.  I understand that to perform EXCISION of a Stage 1 tumor, the recommendation is 1 cm margins for Stage 1.

Rather than excision guidlines my question refers to pathology results AFTER excision:   

If pathology report shows the tumor has been "completely excised" but the margin is "very narrow"- what margin IS adequate?

Unless a biopsy has been done, the surgeon performing the excision has little more to go on to provide adequate EXCISION margins than a superficial observation of the tumor and presumed healthy tissue margin surrounding it.   Depending on presumed thickness, as you say for Stage 1 the doctor establishes either a .5cm or 1.0cm margin.

However, the pathology report is no doubt far more accurate than the naked eye.   And (just guessing), it may well show- as in my case- a margin of healthy tissue significantly reduced from the excision margin the surgeon employed.

So the question is:   What are recommended margins for a Stage 1 tumor based on the pathology report AFTER the excision has been made?    Despite the difficulty the surgeon has in predicting adequate margins compared with the pathology report, it seems likely margins apparent after a microscopic evaluation would be reduced from those the surgeon used to make the excision.

I've looked everywhere online, called several national melanoma hotlines, but have so far not found a reply.   All I know is that "very narrow margins" and "completely excised- although narrowly" seems vague to determine the need for re excision.

Thanks for your help.

The Only Good Legend is a Dead Legend.

Janner - (3/17/2012 - 4:19pm)

I'm still not getting your question.  In many biopsy pathology reports, you will see "3mm margins acheived" or something along those lines.  On one of my melanoma reports, the pathologist recommended taking an additional 3mm margins.  (This was after an excisional biopsy with extra tissue taken).  With your "narrow" margins, I suspect that would mean 1-2mm margins at maximum.  Anything larger than that would probably be noted as an actual number.  Are you thinking that your narrowly excised lesion would NOT require additional excision?  My interpretation of narrow means they didn't see any cells on the actual margins but everything was so close they wouldn't rule that out.  I would infer that you would still need a sizeable margin removed if your lesion was clear with narrow margins.  (I know I would not be comfortable in the least with narrow margins only).

So what does the surgeon do?  He eyeballs it.  He typically measures 1cm margin from the edge of the defect on either side, and longer margins along the other axis to close the lesion.  (.5cm margins is for in situ, not stage I).  He may take more or less depending upon anatomy and if the biopsy report indicates a lesion with higher or lower risk.  Then the WLE pathology analyzes the margins.  However, WLE tissue is not analyzed to the same extent as biopsy tissue.  Also, tissue preserved in formalin will shrink to some extent.  All that is usually accounted for to some degree.  However, if the WLE tissue comes back totally clear and the pathologist only measures 8mm or tissue, I seriously doubt they would go back in and take more.  Those 2mm might just be presumed to be the shrinkage achieved in the preservation method.  The depth measurement is an exact one.  The WLE margins, I think, are considered more "approximate".   

Not sure I touched upon your actual question or not, but that's my best try.

Janner

Bob B. - (3/17/2012 - 8:29pm)

Thanks very much for your reply.   Very interesting. 

On your first point, neither of the two Brazilian pathology reports on my lentigo maligna melanoma excision of two years ago mentioned "margins".   The San Diego pathology report on my current, superficially spreading melanoma also does not.   Unless we can call "very close to the lateral margin... excised completely albeit with very narrow margins."-  scientific.  Maybe you can interpret what this means, I cannot.   Does "completely excised" preclude the existence of diseased cells within the "very narrow margins" or in fact beyond?   Who the hell knows?

These pathology phrases are so vague, I have no idea whether to have another excision before the sutures of the first excision are removed.   Seems to me we need some "numbers".    Do you agree? 

As far as I can tell the dermatologist chose 5mm margins because she had no biopsy beforehand to stage the tumor and imagined for some reason it was "in situ".    Instead of the 10mm (1cm) margins recommended for the epidermal and "dermis filled and expanded" spreading melanoma it turned out to be.   Although the surgeon based margins on the naked eye, I specifically asked that encision margins be made very generous.   I even tried to reassure the surgeon that aesthetics were unimportant.   Either she didn't believe me or for some reason believed the growing tumor I tracked for eight months was an "in situ".    Or both.   In contrast with my controversial post "Overtreatment?", perhaps a case of "Undertreatment"?   That's a laugh, but I can tell you I'm not happy.

Your last paragraph on pathology differences between biopsies and excisions much appreciated.   As mentioned, the pathology reported "completely excised".    Not sure what your reference to "8mm of tissue" refers to, sorry.  

The surgeon has already advised she'd like to do a second encision.   Instead, I have asked for quantification of histologic margins before considering this.   Your comments on shrinkage, etc may come in handy.        

Thanks very much for your comments.   Anything else you'd like to add would be most welcome.

 

 

 

 

 

 

The Only Good Legend is a Dead Legend.

Janner - (3/17/2012 - 9:30pm)

With Lentigo Maligna, it would be even more difficult to "guess margins" out the outset with no biopsy.  It often is unseen on the surface but extends quite far from the original lesion.  It tends to have the highest local recurrence rate based on this tendency.  It can also be the same with Superficial Spreading although that type doesn't have the same high local recurrence rate.  You can look on the surface but that does not tell the full story from below.  It will always be somewhat of a guess by the surgeon to get complete margins without a prior biopsy.

I've been in this world for a long time and I've read a lot of pathology reports here over the years.  If I received your pathology report that said "narrow margins", I would assume that there was 1-2mm margins AT MOST.  I would want the complete 1cm margins and I would most definitely have another excision.  Surgery at this stage is the very best "cure" for melanoma and having adequate margins is the best preventative measure you can do at this point.  There is no way I would be happy leaving the lesion as is if that report was mine.  I suppose you could send your report to a different lab - or ask for exact clarification from the pathologist who did your current report.  But I know that narrow margins doesn't meet the definition of "wide" margins used today.   I don't tend to push "overtreatment", but I also know this is a disease where undertreatment can be deadly.  It's a fine line to walk.

My first 2 melanomas were removed via excisional biopsy with extra margins.  However, neither had the final margins needed.  Both only needed a few more millimeters, but I decided the extra surgery was worth it.  As I said before, at this stage, the WLE can be curative.  Given that there are no good treatments if there is a metastasis, getting good margins at this time seems the absolute best way to prevent a melanoma recurrence later.  My 80+ year old father had a 2.22mm lesion removed with 2cm margins - no SNB (his choice and I agreed).  Five years later, he had a palpable lymph node.  We removed that via local, but now he has other lymph node involvement.  It's a quandry to figure out what is best at this point.  I try not to second guess things, but doing a LND (if he had had a positive SNB) 5 years ago would have been much preferable to doing it now at age 87.

Doing the entire excision without a biopsy does have it's down sides if you were ever to entertain having a SNB.  Back at the time of my first melanoma, the SNB didn't exist.  My second was in situ and I was certain it was early.  I know we could debate "overtreatment", but the SNB does allow you to treat things earlier if it is positive.  Removing lymph nodes with micromets is much preferable to obvious disease.  And doing the SNB after the biopsy with included wide margins can compromise the drainage paths.   I respect that everyone can choose what works best for themselves, but there are studies out there that give us reasons certain standards have been created.  I tend to pay attention to those standards, then decide what works best for me.

Get your clarification on your report, but please consider the additional margins.  Narrow margins and wide margins are not synonymous in any reports I've seen. 

j

Bob B. - (3/18/2012 - 12:54pm)

Replied, but lost again...

The Only Good Legend is a Dead Legend.

Bob B. - (3/18/2012 - 3:14pm)

Second "Reply":  The first was somehow 'lost' when posting.   Recap, briefly to avoid rewriting >>>

Very interesting, thanks.    With such information and direct experience so kindly shared, this is truly a wonderful venue.

Guesswork:   I understand.  It's something we have to live with.   As my doctor in Rio put it:   "Medicine is Art + Science.  Mostly Art."   That is, insight, which is often (not always) gained through experience.   I am just beginning to learn about melanoma, yet I spotted the first, Lentigo Maligna Melanoma 2 years ago.   As well as this one, which just, well, "looked like" what it turned out to be.   After tracking its (apparently) slow growth 8 months, a Superficially Spreading Melanoma.   Irregular, diffuse edges of varying color density.

Allowances for guesswork are important.   But still, it is hard to understand why a dermatologist-surgeon would choose 0.5mm margins appropriate to an "in situ" Stage 0.   Instead of 1.0cm margins used with Stage 1 ≤1.0 Breslow thickness.  Besides,  I made a point of requesting generous margins- precisely in the attempt to avoid any doubt.

I am sure you are right that excision with adequate margins is fundamental.   This is why the report's "very narrow margins" suggests its assertion the melanoma "has been completely excised" lacks credibility.   With this and your comments on the usefulness of wide, rather than narrow margins, have you a comment on the margin ambivalence results of this study of IIA-C patients?    I gather this subject has been trending upward in oncology circles.   Of course the study focused on 2 vs 4cm margins (a 1cm vs 2 cm study is planned), so it is certainly not conclusive for ≤1.0mm tumors.  Still, with "Medicine as Art" in mind, what do you think?

http://www.cancer.gov/clinicaltrials/results/summary/2011/smaller-margin1211

Prior to excision, I asked for two independent pathology reports.   My request is likely a moot issue now, due to inadeqaute margins and the report's consequent ambiguity.   Also, there is the inevitable tissue disturbance and initial lab work tissue shrinking that you described.   

Thanks for sharing your father's story.  This is truly daunting.    Besides, most of us would have chosen exactly the same course of action.   Please wish him well.   You mention SNLBs' were unavailable with your first melanoma.   Yet another issue that since those days has become 'controversial'?    They are not apparently not "therapeutic", useful strictly for Staging and prognosis.   The concern is they are overprescribed or prescribed too early for most thin melanomas.  Studies show SNLB's offer no survivability advantage.

I forget what else I posted before it was lost, so...

Chances are I will take your advice and have it re-excised to increase margins, stop my grumbling and just get on with it.   Oncology is changing so very quickly.   The problem, of course, is that melanoma changes very quickly, as well.   

 

 

 

 

The Only Good Legend is a Dead Legend.

Bob B. - (3/20/2012 - 9:01pm)

This 2005 Study concluded no recurrence nor survivability advantages to wider margins @ tumor thickness ≤2.0mm.   

Study discusses histological vs clinical margins, as well.  Interesting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1356919/

The Only Good Legend is a Dead Legend.

Bob B. - (4/12/2012 - 12:03pm)

I was unable to receive quantification of histologic margins for the primary superficially spreading melanoma (SSM) I had excised 3 weeks ago using 0.5cm surgical margins.    Same response:  "very narrow margins".   But thanks to you and the very bright young pathologist with whom I spoke, I understand the problem better now.   Judgement and intuition-  not just objective criteria-  in cases like mine can play a major role.  

I returned last week for a second WLE, this time with 1cm margins on top of the first excisions's 0.5mm margins.  

The second WLE pathology report received today states "completely excised" (again), but without the "very narrow margins" comment of the first.   Strangely, though, no prognostic factors are given-  all of which were quantitifed in the first:   Breslow thickness, mitotic rate, Clark level, etc    Given the vague histologic margins achieved by the first excision, it seems odd the second also does not mention them, much less quantify them.

Question:   Does a wider excision on top of a prior one result in tissue deformation which makes prognostic factors no longer possible?   The pathologist mentioned the 'scar line' from the first excision showed clearly this time.   But importantly, a few questionable melanocytes did appear over the line into the second, presumably healthymargin area.  

So, good thing I returned for a second WLE- as you, the pathologist and surgeon all strongly recommended.  Thanks!

The only question remaining is:   Is it normal that no prognostic factors or histologic margins are mentioned?  Thanks again for your insights.   

The Only Good Legend is a Dead Legend.

Bob B. - (4/13/2012 - 11:42am)

Please ignore my last post.  Stupid.   Of course there won't be prognostic factors with a re-excision (Breslow, mitotic rate, Clark, etc).    The first excision removed the tumor.    I would have liked to see updated histologic ('achieved') margins.  But it may not have been possible.  

  

The Only Good Legend is a Dead Legend.

Minnesota - (4/13/2012 - 1:47pm)

Just wanted to stop by and say that it sure was a good thing you had the wider excision - hope it's healing well.  I imagine that pathology reports are usually similar to yours for WLE - it's the tumor that gets all the attention. 

Persistence (sometimes) Prevails When All Else Fails

Bob B. - (4/18/2012 - 7:22am)

Thanks for that.   The superficially spreading melanoma (SSM) doubled in 8 months to the size of a penny.  The WLE I had, expanded the second time, is about 6 inches (long 'tips') to facilitate healing.   Impressive.   I'm sure you're right, the tumor gets the attention.   I assume the question is whether the lymphatic drain field is distorted by a WLE- and potentially problematic in case a later SLNB is required.    But as far as I can tell, excision is still the real deal for early stage melanoma.    

The Only Good Legend is a Dead Legend.

Minnesota - (4/20/2012 - 3:52pm)

I would guess that any new/recurrance would try to make a new path. I wish I understood more about that, but I don't think it's a given that it will eventually get to the closest lymphs because so many later stage people here had a negative SLNB. It seems that catching it early like you did, and having the WLE is the best. 

I know you're glad to have all that over - I had a hard time understanding why I had to go through two excisions, but I can see that my arm is far more protected with the second surgery. If your excision feels like it's pulling a lot, go to Walgreens or CVS and get a stick of 100% cocoa butter. It's really helped mine.

Persistence (sometimes) Prevails When All Else Fails

Bob B. - (4/20/2012 - 9:20pm)

I would guess you are right.  I think your comment is important.   Is the lymph drainage network- that a few surgeons avoid distorting by rejecting a WLE and going straight to a SLNB- how closely has it been studied?   You would think it important to stage metastasis from the primary tumor presumably to the nearest lymph node basin.   Must be complex.

Funny, but I'm not glad to have it over.   For one thing, it's our responsibility to continue to check for lesions for the rest of our lives.   For another, kind of anticlimatic.   I know it sounds strange, but just when I was enjoying the turn of events, it was over.   Not that I actually want to have more problems, but...

 

Thanks for the tips on cocoa butter.   The second one pulled alright.   Might try in on some biopsies today.. 

The Only Good Legend is a Dead Legend.

JerryfromFauq - (4/14/2012 - 1:54am)

Glad you got it done.  After my first excession, I requested a second opinion.  It said get wider margins.  The Local surgeon took two months to do it.  About two months later I found it in a lymph gland.  The local surgeon again delayed doing anything.  By the time I played the insurance company referral and pass me around game, and actually got to a real Oncological surgeon.  (One of the top 100 Oncological surgeons in the USA)  The night before the node operation I discovered a new tumor on the edge of the re-excised original tumor location.  This surgeon did a great job on the extensive lymph node involvement.  This even included sending specimens to the pathologist during the actual operation.  One of the nodes was ulcerated so they had problems telling if they actually had ALL OF THE DISTANT CELLS.  (I'm 2 INCHES narrower on that side of my abdomen than on the other side.)  The pathologist finally said they had the adequate generous margins (2 cm). All scans indicated that I was free of melanoma.   The surgeon discussed the operation and report with me, so I kept a vigilant watch on that lymph node area. A month later x-rays showed lung tumors, so after being mis-diagnosed by the local doctor for 3 & 1/2 years I went from my best physical ever to having a "simple" operation with inadequate margins (was told "we got it all!)" in May to being Stage IV in Feb.   Two years later I felt another lump in the lymph node area fairly near the groin lymph node scar and asked that it be removed (even though I still had innumerable lung tumors).  Even with my extremely experienced and great surgeon and pathology being done during the long operation a cell or two had escaped into local surrounding tissue (Yeah, the lump appeared and within a month had grown to the size of the last section of my little finger. It was also very black when I looked at it after removal. ) 

As said before, I hate being cut on, but I hate cells being missed later deciding to grow.  So would earliers removal have been better?  Would wider margins earlier have been better?  would quicker re-excession have been better?  Sure seems like it to me!

  Good luck on having it stopped now.  As I have said and as you are doing, be vigilant, not paranoid.  Don 't delay things too long when you believe it is melanoma.

 

I'm me, not a statistic. Praying to not be one for years yet.

Bob B. - (4/18/2012 - 7:36am)

Cautionary narrative.   Really.  Thanks for sharing, I'm sure you are right.   An ounce of prevention is worth a pound of cure.  Getting it early with adequate margins is key.   If the two excisions I've had in the last couple months have really done the job, I suppose but I dunno.  If so, it's despite the absurd nonchalance with which I watched it spread for 8 months.   Stupidity and a complete lack of paranoia is my perennial problem.   I'll try to do better next time, as I assume there will be one.   A whole lot quicker off the mark.   Bottom line is, it's largely up to us.   Thanks again.   

The Only Good Legend is a Dead Legend.

Bob B. - (3/20/2012 - 9:11pm)

I'd be interested in your thoughts on new post today, "PC Pathology or Pathological?"   To understand what I took from my conversation with the pathologist, I would need to provide details of his description of commercial exigencies and litigation protection expediencies that exist between clinician and pathologist.    Useful subject?   On the other hand, it may be entirely irrelevant to our mission to recover good health.   Afterall, the end result supports adequate rather than inadequate treatment.  

It seems good can in fact come from illogic.

The Only Good Legend is a Dead Legend.

Minnesota - (3/18/2012 - 1:41pm)

Hi Bob,

I just wanted to say that I am happy to hear that you had it removed. I too would be disappointed in the thought that I might need additional surgery - I know you were trying very hard to avoid that.

If it were me, I would get it re-excised. It would be nice if they would have put a number to "very narrow," maybe your doctor can call them and ask them to do that.

I don't have any of the knowledge that others here do, but I'm sure that your doctor tried to take generous margins as requested, but part of the SSM was under the visible skin, and that is why it stretched further to the margin edge. My WLE had a nevi underneath that was cut through in the WLE so my pathology report had to have another opinion.  I went mental thinking I had to have yet another surgery in the days it took to clear that up. 

It's just one of those unfortunate "best laid plans" things. 

Paula

Persistence (sometimes) Prevails When All Else Fails

Bob B. - (3/18/2012 - 3:32pm)

Hello Paula,

Thanks very much for that.   I am also glad I had it removed.   Just that I was "gladder" before, when I imagined adequate margins would produce an unambiguous pathology report.  

 I'm trying to get them to provide a number for "very narrow", but I am not expecting much.   If they could have quantified "achieved margins" before, I suppose they would have.  Lack of biopsy or not, I will have to lean on the dermatologist-surgeon about use of Stage 0 "in situ" margins for something that, at least to me, appeared to be Stage 1 or more, requiring double the margins.   I won't lean too hard, she's the one with the scalpel.  :-)

I'm also wondering about about the traditional 'breadloaf' technique they, and many other labs also, use.   False negatives, do you know about this?    But you're probably right.  The SSM was probably below the skin, while the doubtful area was limited to "12 o'clock to 6 o'clock" on the lateral edge.   The guesswork issue Janner mentioned earlier that we just have to live with.

I'm not too concerned about the re-encision as such.   Just bored at the idea and dislike doing things over- not to mention the additional cost.

 

Thanks again- Persistence!

Bob   

 

The Only Good Legend is a Dead Legend.

Minnesota - (3/19/2012 - 2:25pm)

I try not to think about false negatives, there are articles about the SLNB having a 5% rate. Obviously melanoma is so tricky that it get past the current procedures detection or we wouldn't see so many people here who went from stage 1 to 4.

Can the dermatologist do your re-excision? The cost in a hospital is insane - my bill for the SLNB and WLE is over 10K, and I was there less than 6 hours.

I feel good about my pathology reports because my dermatologist knew and worked with the lab while in residency and talked to them personally about my case and also reviewed my slides. One good thing about your re-excision is that they will compare all the tissue again, that was reassuring to me.

Hang in there Bob, hopefully this is the end of melanoma for you. I hope we see a lot more advances in knowledge soon! 

Persistence (sometimes) Prevails When All Else Fails

Bob B. - (3/19/2012 - 2:55pm)

I agree, why spend time thinking about false negatives.   

It sounds to me like you had very good treatment, particularly the close interface between pathology and your dermatologist.   I'd say that is very important.  

I'm curious to see how the pathologist reacts to my request to quantify "achieved histologic margins"- instead of the vague pathology report phrases "narrowly excised.... close to the lateral edge".   If I were he, my reply would be something like pathology margins were "too close to call".   Therefore, re excision, which is what the dermatologist wants.   Me too.  

What irks is that adequate surgical margins for Stage 1 or higher start at 1.0dm.    Not the 0.5cm suggested for "in situ".   The thing is I'd tracked the tumor's slow growth for 8 months, I requested "generous margins" and, to reinforce, further added that aesthetics were unimportant to me.   If the pathology is accurate that it was "completely excised", it seems clear that an additional 0.5cm would have obviated the need for re excision.  Grumble, grumble.

It's my own fault for not researching suggested margins before surgery.   Had I done so, I would have questioned the use of only 0.5cm.  I keep saying it's best to be informed.  Yet I broke my own rule!    Next time, I'll be better prepared.   

Thanks again for the input.   Let me know how things progress for you?

The Only Good Legend is a Dead Legend.

JerryfromFauq - (3/19/2012 - 4:36pm)

Glad you got it out.  I had to wait over two months for my wider margins to be taken.  That was a pain!  Wish he had done a more complete job the first time.  Janner has given you much great info an I agree very much with her last response to you.  I too hate lack of precise numbers. (Not wild about being cut on either.) but agree that any cells that may have slipped farther away than was seen is good to get rid of.

I'm me, not a statistic. Praying to not be one for years yet.

Bob B. - (3/19/2012 - 4:55pm)

Thanks for that.   From your comment about 'wider margins', I guess it's to some degree 'hit or miss' whether the margins chosen will be adequate or not.   I agree, if a pathologist's respone is framed with numbers, phrases like "closely, very narrow" don't do the job.   I reckon his response to my query will be something like "too close to measure".  Interestingly, I could find no histological margin recommendations.   American Cancer Institute contact believes they must be "the same" as recommended surgical margins.  Which I take to mean, 'hit or miss' margins from superficial inspection (no prior biopsy) must mean re excision is quite common.   So if I I had had a biopsy prior to excision, more ample margins might have been indicated and I would not have to have the re excision.   A guess.

BTW, I've heard commonly used "breadloafing" pathology produces its share of false negatives.   Is there an option, other than MOHS?)   Look forward to an eventual pathology-  from a more 'generous' excision next time.          

The Only Good Legend is a Dead Legend.

LynnLuc - (4/30/2012 - 11:23am)

wow Bob I think you are the only other person I know who had malignant lentigo melanoma. It was concerned the old peoples cancer...slow growing . I was dx'ed in 92 at age 36. They didn't give me a stage either however it was a long freckle type spot over 1 inch long. They removed every mole on my body, but only that spot came back from Walter Reed as "precancerous". Told me not to worry they got it all. In 96 it came back again in the same place...except it was a purple/black spot that was raised and the size of an eraser. I was dealing with my son's cancer at the time and believed mine was "nothing". My son passed away in 1998 when he was 16. I went thru depression and didn't tend to mine again until 2000. They removed it again - this time it was Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. They also took out 5 SLN from my neck....they were all clear.

In 2009 I had a little cough, tiring easy etc etc...had a chest X ray. A small mass was seen in my mediastinum area. CT confirmed it.

I went to Mayo Clinic in Rochester MN - they did a Bronchoscopy and was able to nibble at the mass. It was at the crossroads of my heart vessels and my lungs...it was considered inoperable due to the location. The news was- Stage 4 melanoma.

I was given the generous prognosis of having 6- 9 months. They recommended radiation and Temodar are palliative care. They hoped it would cause the melanoma to shrink back from my superior vena cava a little so blood could continue to flow to the upper have of my body.

I remained stable- no shrinkage, no spread with a 4.3 SUV . In March 2010 the SUV jumped, as did I and went back to Mayo. I begged to have surgery, knowing the risk. They agreed.

I had a thoracotomy to remove the mass (and a wedge resection for a small spot that ended up being benign). The melanoma was in lymph node. At its widest base it was 6.8 centimeters. They also removed the upper and lower lymph node below it. Both appeared clear.

I am in a vaccine trial for over 1 ½ years and NED for 2 years.

I don’t believe the medical society did enough when they removed it the first and second times. They never recommended any treatment or follow-up scans.

You have made many statements in the past about over treatment in early stages (among many other things)…obviously as a stage 1 person you really have no idea of what you are talking about….

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Bob B. - (4/30/2012 - 1:31pm)

You are right:   I really have no idea of what you are talking about.

Why?   My "many statements"- as you characterize them-  are from my own, limited experience.   From no one else's.  I don't pretend to speak for everyone.  Do you?   We can learn from each other-  but only if we see each case is individual.  That "Stage 1's" do not have to 'pay their dues' to share opinions.   That we reject the censorship of lessons others have learned-  just because they do not conform to our own.   That we refuse to deny 'overtreatment' exists, insist there is only 'undertreatment'.   That there is more than one way- our way- to see things.  

So my error is one of hubris in that I imagined no one has some sort of personal medical history axe to grind, that personal opinions are allowed, that no one would feel like their toes had been trod on, that we are all here to learn something if we can.      

Drop the backbiting-  we share alot more than you think.   We have both had lentigo maligna melanoma.   I foolishly watched a spreading lesion for eight (8) months- before doing something about it.  You let a couple years go by, yourself.   

Be kind to yourself.   A good place to start is by being kind to other.   Agreed?

 

The Only Good Legend is a Dead Legend.