kateboston

Hi bostonguy,

Back in 2010 at the age of 30 I went through a very similar experience. My mole was on the back of my left calf and was 1.17mm, w/o ulceration and a mitotic rate of 5. 1 of the 3 lymph nodes I had removed in the SLNB came back with microscopic amounts of melanoma. 

I had to have lymph node dissection of my left groin which ended up being a little more than I expected both emotionally and physicially. Physically it was hard to walk for a little while and I had that damn drain in. When I was first told about the drain, I didn't think it would be a big deal but I ended up hating that thing. It was in for 3 weeks and it made it very difficult to go out and get around. I ended up getting an infection at the drain site about 2 weeks after my surgery and was admitted for a few days to treat that. Then after the infection was gone I started Interferon. I did the one month high dose infusion and then did the injections at home for only 2 months b/c the interferon began to affect my vision so my doctor's decided to stop it.

I'm also in Boston (as you can see from my name) and am also treated at MGH – you are in WONDERFUL hands there. Dr Wargo was my surgical oncologist and Dr Lawrence is my medical oncologist.

Best of luck with your next steps – if you have other questions or anything, just let me know – I'd be happy to chat.

– Kate

Hi bostonguy,

Back in 2010 at the age of 30 I went through a very similar experience. My mole was on the back of my left calf and was 1.17mm, w/o ulceration and a mitotic rate of 5. 1 of the 3 lymph nodes I had removed in the SLNB came back with microscopic amounts of melanoma. 

I had to have lymph node dissection of my left groin which ended up being a little more than I expected both emotionally and physicially. Physically it was hard to walk for a little while and I had that damn drain in. When I was first told about the drain, I didn't think it would be a big deal but I ended up hating that thing. It was in for 3 weeks and it made it very difficult to go out and get around. I ended up getting an infection at the drain site about 2 weeks after my surgery and was admitted for a few days to treat that. Then after the infection was gone I started Interferon. I did the one month high dose infusion and then did the injections at home for only 2 months b/c the interferon began to affect my vision so my doctor's decided to stop it.

I'm also in Boston (as you can see from my name) and am also treated at MGH – you are in WONDERFUL hands there. Dr Wargo was my surgical oncologist and Dr Lawrence is my medical oncologist.

Best of luck with your next steps – if you have other questions or anything, just let me know – I'd be happy to chat.

– Kate

Hi bostonguy,

Back in 2010 at the age of 30 I went through a very similar experience. My mole was on the back of my left calf and was 1.17mm, w/o ulceration and a mitotic rate of 5. 1 of the 3 lymph nodes I had removed in the SLNB came back with microscopic amounts of melanoma. 

I had to have lymph node dissection of my left groin which ended up being a little more than I expected both emotionally and physicially. Physically it was hard to walk for a little while and I had that damn drain in. When I was first told about the drain, I didn't think it would be a big deal but I ended up hating that thing. It was in for 3 weeks and it made it very difficult to go out and get around. I ended up getting an infection at the drain site about 2 weeks after my surgery and was admitted for a few days to treat that. Then after the infection was gone I started Interferon. I did the one month high dose infusion and then did the injections at home for only 2 months b/c the interferon began to affect my vision so my doctor's decided to stop it.

I'm also in Boston (as you can see from my name) and am also treated at MGH – you are in WONDERFUL hands there. Dr Wargo was my surgical oncologist and Dr Lawrence is my medical oncologist.

Best of luck with your next steps – if you have other questions or anything, just let me know – I'd be happy to chat.

– Kate

Hey!

I am also 31, living in MA, in the healthcare field and have Dr Lawrence as my oncologist! I also don't know any other melanoma patients. I'm stage 3a and just reached 1 yr NED this August. 

I wish you the best. It's an awful disease and an awful thing to happen when you're so young. Continue to fight and stay positive. You can do this.

BTW – I love all the Dr Lawrence & team love right now – he & Krista and that entire team are amazing. 

Hey!

I am also 31, living in MA, in the healthcare field and have Dr Lawrence as my oncologist! I also don't know any other melanoma patients. I'm stage 3a and just reached 1 yr NED this August. 

I wish you the best. It's an awful disease and an awful thing to happen when you're so young. Continue to fight and stay positive. You can do this.

BTW – I love all the Dr Lawrence & team love right now – he & Krista and that entire team are amazing. 

Hey!

I am also 31, living in MA, in the healthcare field and have Dr Lawrence as my oncologist! I also don't know any other melanoma patients. I'm stage 3a and just reached 1 yr NED this August. 

I wish you the best. It's an awful disease and an awful thing to happen when you're so young. Continue to fight and stay positive. You can do this.

BTW – I love all the Dr Lawrence & team love right now – he & Krista and that entire team are amazing. 

Hi Rachel,

I'm 31 years old and am now 14 months NED (stage 3a). I also did Interferon – I did the IV for 1 month and only lasted 2 months on the maintenance phase – it started to deteriorate my retinas so my oncologist stopped the treatment.  I know how hard it is but like some of the other folks said – you are through the worst part of the Interferon. Unfortunately, it's an awful drug but is the only option for us.

The worst part for me was the living in fear. Once I started the transfusion after all the surgeries were over, is when the reality of this disease sunk and I got very afraid. It was all I could think about and I was obsessing about it. I was telling everyone I was okay but I really wasn't – I was scared beyond my wildest dreams. I'm sure you don't want to hear this but it stopped about 2 weeks after I stopped the Interferon. I really think the Interferon was causing me to obsess and focus on all the negative rather than allowing me to live my life.

It does get better and gets easier. I still have my moments and I still get scared every now and then but for the most part life is now back to normal and I wish the same for you in the very near future.

Best of luck.

Kate

Hi Rachel,

I'm 31 years old and am now 14 months NED (stage 3a). I also did Interferon – I did the IV for 1 month and only lasted 2 months on the maintenance phase – it started to deteriorate my retinas so my oncologist stopped the treatment.  I know how hard it is but like some of the other folks said – you are through the worst part of the Interferon. Unfortunately, it's an awful drug but is the only option for us.

The worst part for me was the living in fear. Once I started the transfusion after all the surgeries were over, is when the reality of this disease sunk and I got very afraid. It was all I could think about and I was obsessing about it. I was telling everyone I was okay but I really wasn't – I was scared beyond my wildest dreams. I'm sure you don't want to hear this but it stopped about 2 weeks after I stopped the Interferon. I really think the Interferon was causing me to obsess and focus on all the negative rather than allowing me to live my life.

It does get better and gets easier. I still have my moments and I still get scared every now and then but for the most part life is now back to normal and I wish the same for you in the very near future.

Best of luck.

Kate

Thank you SO much! I am stage 3a as well but only 8 months out from my diagnosis – hearing about your husband gives me faith that I will be okay!

Thank you SO much! I am stage 3a as well but only 8 months out from my diagnosis – hearing about your husband gives me faith that I will be okay!

Thank you – I was only diagnosed 7 months ago and your story gives me hope.

Thank you – I was only diagnosed 7 months ago and your story gives me hope.

Hopefully, the oncologist was just trying to be optimistic but I agree that statement is a little too grand. The likelyhood on this returning after 5 years is slim BUT it could still come back. Melanoma is so unpredictable & you never know. I'm sure your son & his wife just want to stay positive & the thought of it coming back is just too much to bear.

As for the scans, I'm stage 3a and have not had 1 scan. My oncologist at MGH doesn't recommend them for someone in my situation due to many factors – the false positives seen on scans, the scans themselves causing other types of cancers, etc. On one hand, I'm okay with it but on the other, I always wonder 'what if'. I don't think there's necessarily a right or wrong answer. He said if I really, really insisted that he would do it, but I don't know if I'm there yet.

For what it's worth, you're just being a good dad. I sometimes get really frustrated with my own mother who still wants to be very involved in my care – I know she's just being a good mom but sometimes as an adult (31 y/o) it's hard to still have your parents so involved but we do understand that the concern is coming from a good place.

Hopefully, the oncologist was just trying to be optimistic but I agree that statement is a little too grand. The likelyhood on this returning after 5 years is slim BUT it could still come back. Melanoma is so unpredictable & you never know. I'm sure your son & his wife just want to stay positive & the thought of it coming back is just too much to bear.

As for the scans, I'm stage 3a and have not had 1 scan. My oncologist at MGH doesn't recommend them for someone in my situation due to many factors – the false positives seen on scans, the scans themselves causing other types of cancers, etc. On one hand, I'm okay with it but on the other, I always wonder 'what if'. I don't think there's necessarily a right or wrong answer. He said if I really, really insisted that he would do it, but I don't know if I'm there yet.

For what it's worth, you're just being a good dad. I sometimes get really frustrated with my own mother who still wants to be very involved in my care – I know she's just being a good mom but sometimes as an adult (31 y/o) it's hard to still have your parents so involved but we do understand that the concern is coming from a good place.

Hi solodad,

I'm also stage 3a and was diagnosed only a month before you. I did the HD Interferon in Sept & October. I had been doing maintenance but my oncologist stopped it as I experienced retinal changes & they didn't want it to further deteriorate my eyes.

I know this isn't probably much consolation, but right after I finished my month of HD Interferon I had a VERY tough time. I expected life to go back to "normal" and unfortunately it didn't. I didn't feel like myself and it seemed like everyone around me was having such great things going on in their lives and here I am – 30 years old & worrying about cancer at all hours of the day. I also couldn't keep it off my mind, was constantly researching on the internet, would break out into tears randomly at work. It's been a lot harder than I thought it was going to be.

The good part is that slowly but surely it's getting better. The tears have slowed down and I don't obssess as much. Now that I've stopped Interferon completely I'm starting to feel like myself again. There's no question this is awful & hopefully your battle with melanoma is over. Everyone would tell me that only time would make it easier, and unfortunately, it's true.

Don't be afraid to seek out a therapist or psychologist – sometimes having an impartial 3rd party to talk to is the best medicine.

You are not alone in this and what you are going through is completely normal. Best of luck and I hope time starts to heal you.

– Kate