› Forums › General Melanoma Community › stage iiia, lots of questions
- This topic has 12 replies, 4 voices, and was last updated 10 years, 11 months ago by
AllyNTAus.
- Post
-
- May 11, 2013 at 6:43 pm
hi all. i am new to these boards as a user but have been reading them for the last few weeks–so helpful. my husband had a mole removed from his bicep in march, was diagnosed with melanoma in early april. the tumor was .8, with no ulceration and to trace of mytotic rate. we were told the standard of care is to breathe a sigh of relief and do nothing.
hi all. i am new to these boards as a user but have been reading them for the last few weeks–so helpful. my husband had a mole removed from his bicep in march, was diagnosed with melanoma in early april. the tumor was .8, with no ulceration and to trace of mytotic rate. we were told the standard of care is to breathe a sigh of relief and do nothing. he's 45 with three kids (13, 12, 10). it didn't like not knowing if the cancer had already spread, even though he was such a low risk for spread (something like 96% chance it had not spread). i researched and found that at 40 years old and .75+ depth, SNB was starting to be recommended. so we pushed and got it done. unfortunately, two of four lymph nodes removed were cancerous (i don't know the details yet…macro/micro, etc.). he just had a petscan on friday and will have lymphandectomy (sp?) on tuesday. so this weekend and the last week has been awful and we are hoping for some good news. i think he is stage iiia and we are hoping to stay there.
so here are several questions. 1) has anyone had such a "small" tumor that has spread to lymph nodes? 2) he feels perfectly fine, perfectly healthy, besides the surgical spots. i'm guessing that from reading here that that means nothing and we'll find out soon enough whether it has spread to organs and other lymph nodes? 3) we are at stanford, and i feel very good about his surgeon. he has only recommended petscan…should one get other scans or is this fine for now? 4) i know for the oncology portion that cal pacific and ucsf are highly recommended; has anyone stayed at stanford for the melanoma oncology (dr. reddy)? 5) finally, a good friend whose husband died of liver cancer recommended a doctor who runs a company called "good medicine." you meet with this group (multiple doctors, nurses and researchers), they review all your records, and they can help recommend where you might be treated, with whom, etc, based on your needs as a family and the doctors' expertise, your stage, etc. they are not specific to cancer or melanoma. has anyone used a group like this?
thank you for any thoughts you have.
- Replies
-
-
- May 11, 2013 at 7:38 pm
Good for you for pushing for that SNB. But the fact that you had to "push" for it makes me wonder if he is being seen at a hospital with a department that specializes in melanoma.
As you've already learned the hard way, melanoma is sneaky and unpredictable. This "Good Medicine" company may be fine for some other conditions, but probably not melanoma. To get effective medical treatment for melanoma you need to be seen by an oncologist who deals with it on a daily basis and the only places you're going to find people like that are at major medical centers, which will have departments devoted to this type of cancer. MRF has a list of melanoma centers and you can find one for your state here: http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20treatment%20center%20finder
-
- May 11, 2013 at 7:38 pm
Good for you for pushing for that SNB. But the fact that you had to "push" for it makes me wonder if he is being seen at a hospital with a department that specializes in melanoma.
As you've already learned the hard way, melanoma is sneaky and unpredictable. This "Good Medicine" company may be fine for some other conditions, but probably not melanoma. To get effective medical treatment for melanoma you need to be seen by an oncologist who deals with it on a daily basis and the only places you're going to find people like that are at major medical centers, which will have departments devoted to this type of cancer. MRF has a list of melanoma centers and you can find one for your state here: http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20treatment%20center%20finder
-
- May 11, 2013 at 7:38 pm
Good for you for pushing for that SNB. But the fact that you had to "push" for it makes me wonder if he is being seen at a hospital with a department that specializes in melanoma.
As you've already learned the hard way, melanoma is sneaky and unpredictable. This "Good Medicine" company may be fine for some other conditions, but probably not melanoma. To get effective medical treatment for melanoma you need to be seen by an oncologist who deals with it on a daily basis and the only places you're going to find people like that are at major medical centers, which will have departments devoted to this type of cancer. MRF has a list of melanoma centers and you can find one for your state here: http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20treatment%20center%20finder
-
- May 11, 2013 at 11:27 pm
"the fact that you had to "push" for it makes me wonder if he is being seen at a hospital with a department that specializes in melanoma."
I wouldn't say that. At 0.8mm it's questionable. . .some say no SLNB unless 1.0mm or more. . some say .76mm or more. . so 0.8mm is on the line of being iffy to do it
-
- May 11, 2013 at 11:27 pm
"the fact that you had to "push" for it makes me wonder if he is being seen at a hospital with a department that specializes in melanoma."
I wouldn't say that. At 0.8mm it's questionable. . .some say no SLNB unless 1.0mm or more. . some say .76mm or more. . so 0.8mm is on the line of being iffy to do it
-
- May 11, 2013 at 11:27 pm
"the fact that you had to "push" for it makes me wonder if he is being seen at a hospital with a department that specializes in melanoma."
I wouldn't say that. At 0.8mm it's questionable. . .some say no SLNB unless 1.0mm or more. . some say .76mm or more. . so 0.8mm is on the line of being iffy to do it
-
- May 13, 2013 at 5:13 pm
Hello,
I also have a 'small' melanoma, recently diagnosed, level 2 stage t1a….. Mine is <1mm, no ulceration…. I have a question for you, what prompted you to push for a SNLB? I haven't even thought about that (mine is on the rim of my ear) and they haven't suggested it, but I too have read about it and was curious if there are any specific symptoms he was having, or signs that it has spread to 2 of the 4 nodes removed. This scares the hell out of me, even when caught early, I've had 2 excisions, and now going in for my 3rd re excision with margins, waiting for results from a second opinion to get specifica on the thickness, etc… I would think if they wanted me to have SNLB they would have recommended it when they recommended the re excision, but like I was asking, were there any signs regarding the nodes?
I hope all goes well for your husband, seems almost surreal that there are so many people this this horrible disease, that most wouldnt even know existed unless they had an encounter of their own. Besy wishes to you both.
-
- May 13, 2013 at 5:13 pm
Hello,
I also have a 'small' melanoma, recently diagnosed, level 2 stage t1a….. Mine is <1mm, no ulceration…. I have a question for you, what prompted you to push for a SNLB? I haven't even thought about that (mine is on the rim of my ear) and they haven't suggested it, but I too have read about it and was curious if there are any specific symptoms he was having, or signs that it has spread to 2 of the 4 nodes removed. This scares the hell out of me, even when caught early, I've had 2 excisions, and now going in for my 3rd re excision with margins, waiting for results from a second opinion to get specifica on the thickness, etc… I would think if they wanted me to have SNLB they would have recommended it when they recommended the re excision, but like I was asking, were there any signs regarding the nodes?
I hope all goes well for your husband, seems almost surreal that there are so many people this this horrible disease, that most wouldnt even know existed unless they had an encounter of their own. Besy wishes to you both.
-
- May 13, 2013 at 5:13 pm
Hello,
I also have a 'small' melanoma, recently diagnosed, level 2 stage t1a….. Mine is <1mm, no ulceration…. I have a question for you, what prompted you to push for a SNLB? I haven't even thought about that (mine is on the rim of my ear) and they haven't suggested it, but I too have read about it and was curious if there are any specific symptoms he was having, or signs that it has spread to 2 of the 4 nodes removed. This scares the hell out of me, even when caught early, I've had 2 excisions, and now going in for my 3rd re excision with margins, waiting for results from a second opinion to get specifica on the thickness, etc… I would think if they wanted me to have SNLB they would have recommended it when they recommended the re excision, but like I was asking, were there any signs regarding the nodes?
I hope all goes well for your husband, seems almost surreal that there are so many people this this horrible disease, that most wouldnt even know existed unless they had an encounter of their own. Besy wishes to you both.
-
- May 14, 2013 at 1:28 am
If you have a look at my profile you will see how I progressed. My primary lesion was originally measured at under 1mm, and my doctor was ambivalent about SLNB but he had the pathology reviewed and the opinion was that it was actually a bit deeper, 1.1mm, which tipped the balance in favour of having SLNB. Things have been a rollercoaster since there, and apart from when I developed the shortness of breath in 2012, I have always felt well. I don't mean to scare you but it is a sneaky disease, so being pro-active and being able to access expert melanoma practitioners is important.
Best wishes for a happy outcome for your husband.
Ally
-
- May 14, 2013 at 1:28 am
If you have a look at my profile you will see how I progressed. My primary lesion was originally measured at under 1mm, and my doctor was ambivalent about SLNB but he had the pathology reviewed and the opinion was that it was actually a bit deeper, 1.1mm, which tipped the balance in favour of having SLNB. Things have been a rollercoaster since there, and apart from when I developed the shortness of breath in 2012, I have always felt well. I don't mean to scare you but it is a sneaky disease, so being pro-active and being able to access expert melanoma practitioners is important.
Best wishes for a happy outcome for your husband.
Ally
-
- May 14, 2013 at 1:28 am
If you have a look at my profile you will see how I progressed. My primary lesion was originally measured at under 1mm, and my doctor was ambivalent about SLNB but he had the pathology reviewed and the opinion was that it was actually a bit deeper, 1.1mm, which tipped the balance in favour of having SLNB. Things have been a rollercoaster since there, and apart from when I developed the shortness of breath in 2012, I have always felt well. I don't mean to scare you but it is a sneaky disease, so being pro-active and being able to access expert melanoma practitioners is important.
Best wishes for a happy outcome for your husband.
Ally
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.