@sams
Forum Replies Created
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- August 10, 2017 at 8:20 am
Firstly, well done for persevering and getting something done. I too share your sentiment about how could one mole cause so much grief ! It seems so hard to take in and even for me at times I can't totally fathom that out. Its really scary and confusing and makes no sense that something so small can become such a major focus and inconvenience.
I am sure others here will recommend you find yourself a melanoma specialist and hopefully will have good recommendations to share. There is nothing worse than feeling your surgeon is only one Google ahead ( or behind) what you can find out on the net with regards next step treatment. My understanding is anything over 1mm will need 1-2cm clear margins in all directions along with your slnb as planned. My surgery story is complicated but I was lucky enough to find a good plastic and reconstructive surgeon second time round who fixed up the mess a regular surgical oncologist with good intentions created initially, so even if it sounds like they need to remove a lot you should be patched up properly at the time as you live in a developed country.
many people do not get melanoma. For thousands of years mankind survived without sunscreen or knowledge and they were highly at risk being outside a lot and no modern understanding about wearing a hat as they hadn't even been invented. Something distinct occurs for those of us here, in some cases melanoma appears in places that have not been exposed to sun or ever sunburnt. Being vigilant as one might be for other cancers seems the key, and there are advancements in understanding and treatments happening constantly for us. This community is a wealth of knowledge, experience and warmth to support everyone who finds themselves here. Reach out and you will find help. Thinking of you and that pesky mole that turned your life upside down.
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- April 11, 2016 at 7:10 pm
Wishing you well… Depends where the LWE is… Mine was down to the shin bone and couldn't close so had staples and a hole for sometime. I had to keep my leg elevated as much as possible. It filled in over about 5weeks enough for a graft this coming Thursday. The SLNB was relatively quick to seal up, I got some tugging feelings down my leg and various other sensations as the lymph sorts itself out. Listen to your body and take the time you need, you are not only dealing with the physical but also the mental head games waiting on biopsy results etc . Accept all assistance offered by friends and be well.
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- April 11, 2016 at 7:10 pm
Wishing you well… Depends where the LWE is… Mine was down to the shin bone and couldn't close so had staples and a hole for sometime. I had to keep my leg elevated as much as possible. It filled in over about 5weeks enough for a graft this coming Thursday. The SLNB was relatively quick to seal up, I got some tugging feelings down my leg and various other sensations as the lymph sorts itself out. Listen to your body and take the time you need, you are not only dealing with the physical but also the mental head games waiting on biopsy results etc . Accept all assistance offered by friends and be well.
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- April 11, 2016 at 7:10 pm
Wishing you well… Depends where the LWE is… Mine was down to the shin bone and couldn't close so had staples and a hole for sometime. I had to keep my leg elevated as much as possible. It filled in over about 5weeks enough for a graft this coming Thursday. The SLNB was relatively quick to seal up, I got some tugging feelings down my leg and various other sensations as the lymph sorts itself out. Listen to your body and take the time you need, you are not only dealing with the physical but also the mental head games waiting on biopsy results etc . Accept all assistance offered by friends and be well.
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- February 21, 2016 at 9:48 am
Hi there,
Glad you reached out, this is a really supportive community. Although I am no expert I would say well done for being proactive and being ready to take action. Personally I now live by the mantra if you are uneasy about something get it removed. At this time doing something is better than nothing. It may be nothing, in which case all good. I am sure others will post here with more words for you.
All the best.
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- February 21, 2016 at 9:48 am
Hi there,
Glad you reached out, this is a really supportive community. Although I am no expert I would say well done for being proactive and being ready to take action. Personally I now live by the mantra if you are uneasy about something get it removed. At this time doing something is better than nothing. It may be nothing, in which case all good. I am sure others will post here with more words for you.
All the best.
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- February 21, 2016 at 9:48 am
Hi there,
Glad you reached out, this is a really supportive community. Although I am no expert I would say well done for being proactive and being ready to take action. Personally I now live by the mantra if you are uneasy about something get it removed. At this time doing something is better than nothing. It may be nothing, in which case all good. I am sure others will post here with more words for you.
All the best.
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- May 17, 2018 at 5:07 am
Thank you, Celeste and mark. I really appreciate your kind and knowledgeable words, so thoughtfully written when I am feeling somewhat vulnerable and angry at melanoma. Feeling less isolated and more optimistic, and will certainly push for adjuvant options while I am still well. Really comforting and informative, thank you so much…. I was widowed when my son was 3, so I’m dealing with this alone so it’s been a lot to take in and the hideous wound left from my recent surgery has made this diagnosis and it’s invasive and inescapable effect on my life suddenly demand my attention. Also missing work while I recover.. wondering how I can support myself without income… all these things. I’m sure as the days pass I’ll get a handle on this and feel empowered again, sincere thanks and good wishes.
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- May 17, 2018 at 12:48 am
Hi Ed, first diagnosed December 2015, I was overseas in the Middle East and had struggled to find anyone willing to even remove my primary from my shin, and the biopsy report was not in much detail aside from it being 1.1mm malignant melanoma. I had wide excision and slnb the following February both of which were ‘clear’. ( samples sent to Paris to get fuller reports), graft to finally close it in April 2016.
January 2017 noticed a blob looked like a mozzie bite but not, nearer my ankle same leg. March it was still there so persuaded surgeon to biopsy it ‘ although it doesn’t look like mekanoma’. Yes it was. Nodular-type, 1mm, sent full report back to a specialist here in New Zealand for opinion. = intransit met. Another wide excision and graft came back NED. Decided to give up overseas contract and return to NZ last July. Struggle even get onto a GP list,( took until December, despite my diagnosis) who could then refer me for the long wait list to see plastic surgeon ( March 2018 soonest I would see her)
January 2018 here’s another mozzie bite but not, a bit further to one side same leg. Finally got to see plastic surgeon in March, who takes me seriously, organises PET scan, and biopsy for April. PET NED yay but lesion is most fast growing yet, mitotic 5, depth 1.35mm. Another intransit met. First chance we’ve had to get a sample tested for braf etc, but it comes back nras. Here is nz very little is funded, and as the research shows low response rate for nras is unlikely to be an option as the govt bases funding on success rates per $. In the time since the April biopsy another lesion appeared, and by the time I went under the knife there was a third within 8cm of the biopsy site so they took a massive chunk out to try and get it all. And another separate bit further up my leg. Big graft but healing well.
They have said watch and wait is my only option, cutting whenever one shows up, that there is nothing else available. No adjuvant option or possible treatment aside from removing more and more of my leg. My results will go to a MDM for discussion again. I am lucky that my intransit are visible on my leg but I can’t see all of my body and since each time I’ve had an appointment we have been focusing on treating the obvious there has not been time to do a full skin check. Not sure how frequently I would be getting scanned if I was elsewhere, but they have said only if I get symptomatic. I know there are people unaware of progression until they get a scan.
I was really reaching out to see if there was anyone else nras on here. And what they did. I’m happy to read research data etc but was hoping for an actual person who had this mutation and experience, willing to share. Nz has the worst survival rates and I guess I’m clutching at straws trying to find anything other than poor prognosis about nras patients because there must be exceptions and I intend to be one. Next specialist appt early June for results from this surgery.
thanks.
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- October 25, 2017 at 3:57 am
It's definitely worth checking. For the record my nodular in-transit met looked exactly like a mozzie bite that just never resolved. It was a couple of inches away from my initial primary site, so different to yours. But just so others know, it can look like a mozzie bite and no one was more shocked or disappointed by that news than me. There was another, smaller one next to it that I also had biopsied, and that came back as a nothing. So sometimes it can be, sometimes it isn't. Really glad you are getting it checked anyway and wish you well.
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- May 16, 2016 at 2:40 am
Interesting research, I had also wondered about that. My mole removal had been mid December, follow up late December when I was told I'd need LWE and SLNB. I was travelling to New York in early February to see my son sing at Carnegie hall so was determined to do that prior to any further surgery. Got everything done 21st feb, NED thankfully but have had just about every complication of recovery since then. Glad to say back on my feet and healing well now but it's been a strange ride.
All the best, this forum is great for support and information.
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- May 16, 2016 at 2:40 am
Interesting research, I had also wondered about that. My mole removal had been mid December, follow up late December when I was told I'd need LWE and SLNB. I was travelling to New York in early February to see my son sing at Carnegie hall so was determined to do that prior to any further surgery. Got everything done 21st feb, NED thankfully but have had just about every complication of recovery since then. Glad to say back on my feet and healing well now but it's been a strange ride.
All the best, this forum is great for support and information.
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- May 16, 2016 at 2:40 am
Interesting research, I had also wondered about that. My mole removal had been mid December, follow up late December when I was told I'd need LWE and SLNB. I was travelling to New York in early February to see my son sing at Carnegie hall so was determined to do that prior to any further surgery. Got everything done 21st feb, NED thankfully but have had just about every complication of recovery since then. Glad to say back on my feet and healing well now but it's been a strange ride.
All the best, this forum is great for support and information.
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