4th Melanoma found after skin check

Keeping_positive1

There seems to be a link between melanoma and bc!  My story is that in March 2016 I had a large spot on my right arm, and was diagnosed with melanoma in situ, and I had it removed but also they didn't get the margins so went in again and got clearer margins.  My doctor then recommended I have an ultrasound on the right arm pit just to be sure, and the result was nothing sinister, and nothing in the lymph nodes in that arm.

I have a 7 cm scar from the removal of the melanoma on my right arm!

Fast forward another 8 months in November (today is my 5 year mark), and was diagnosed with aggressive breast cancer and already in the lymph nodes on my right armpit.  This is how fast this mongrel can travel to the lymph nodes, and my doctor was truly amazed at the fast progression, even though it was already in the right breast for who knows how long, but not there 2 years previously with my regular mammogram.. I ended up being HER2 positive with Stage 3, Grade 2/3 on the right breast, then they did more tests and found on the left I had DCIS, with ER positive, so I ended up having the "works"... surgery but just lumpectomies, and full lymph node clearance on right, and 6 removed on the left armpit, and 6 months chemo, herceptin continued on for a year, radiotherapy for 6 weeks both breasts, and still on AI's until end of next year at least.  I had 2 lymph nodes detected with cancer on the right side.

But today I celebrate my 5 year mark.. I was diagnosed 23 November 2016.. so a celebration is in order.  I wish all of us well, because we have been through the mill, I still have not fully moved forward, but that is OK, i am just being kind to myself and not placing too many expectations on myself.  Take care everyone.  xx

FLClover

Omg @arpie, “some people can’t organise a fxxk in a brothel” 😂😂😂😂😂😂😂🤣🤣🤣🤣🤣😂😂😂😂😂😂😂😂

Cath62

Congratulations @Keeping_positive1 on your 5 year mark. You sure had a ride there but sounds like you are doing ok even if there are things that are still hard to move on from.

But melanoma and bc, in fact all cancers are very serious business. When I left school I did nursing. I nursed for 10 years before a career change that went on for 32 yrs. So I while my nursing knowledge is a bit old it also is a bit of a curse because I know things, lots of things and sometimes that makes it very hard to be a patient and more stressful. 

@arpie what a laugh. You certainly cheered me up with your fxxking club idea. 

The dermatologist phoned me last night after he finished surgery. He received a message from the nurse I phoned back asking for earlier surgery.

Long story it seems I went through all that fxxking stress for no reason as the nurse got it wrong!!!!  

I still need more out but it isn't as bad as I thought. Seems that the margin on one side of the 7cm scar is only 1.5mm -hairline but what i need is 5mm to be safe, especially since this melanoma was close to lymph near right underarm (same side as bc) .

The dr explained that the nurse should have told me this detail so I wouldn't have worried. It isn't much of a margin but the cancer cells are gone.  He apologised profusely. He said because clinically it was a clear 1.5mm margin he didn't want to re-tramatise the bicep until I healed. He said if there had been a single melanoma cancer left left i would have been in surgery next week.

 I see him next week and will be providing alot of fxxking feedback to him about his staff's communication with patients who have had 5 primary cancers like me or actually any cancers. 

Keeping_positive1

@Cath62 let us know how you go next week. It makes me wonder where they get their staff from, certainly more training on communicating with patients could be something to be considered, or perhaps some people just are not cut out for those types of jobs.  

Afraser

I rang my medical centre to get the result of a three yearly colonoscopy - the receptionist said that my record was annotated with ‘Doctor to speak to patient’! My doctor wasn’t rostered on. It took some time and energy to get another doctor to investigate and give me the correct message, ‘All clear, doctor to speak to patient at next visit’. Bit of feedback to centre - those who have had cancer once know it can happen. Prompt, accurate information reduces anxiety! 

arpie

Oh dear - WHY can't the Nurse GET IT FXXKING RIGHT??  All that angst - for nothing!  Yep, quality, accurate communication is essential.

All the best for you appt next week and don’t hold back re the lack of communication - write it all down and give him a copay so it is not just ‘he says/she says’! ...

It is obvious that person had NO IDEA what her misinformation does to the state of mind of vulnerable patients xxx Let us know how you go xxx

take care xx

Glemmis

I had a melanoma in 2011 removed by GP & then further surgery 3 weeks later and have a yearly check up at Melanoma Centre. I was diagnosed with breast cancer in 2016 and had surgery, chemo & radiation & Letrozole. I had a very small lesion removed from my leg in Jan which was benign. I fractured my arm in 4 places in July & was in a sling for 6 weeks & wasn’t able to lift my arm until a month or so ago where I noticed a red lesion in the radiation field. My first thought was an Angiosarcoma so Melanoma Centre saw me in 3 days & dermatologist said she was “very worried” it was an Angiosarcoma or a rare melanoma from radiation so either way wasn’t looking good. Results today a benign vascular lesion. I have been very anxious for 2 weeks waiting for results &  really annoyed she said she was really worried. I also think results have been there for a few days because I had to ring them for it. It is just unnecessary but also a warning to look for suspicious lesions if you have had radiation. They are rare and GPs don’t know much about them so you need a dermatologist. I am back on 6 monthly checks now!

Cath62

@arpie I  think I will put my concern in writing. The dr are very good at this specialist centre but obviously there needs training regarding communication with cancer patients.

@Fraser totally agree of prompt accurate information reducing anxiety. Sorry you had to go through that uncertainty for a period of time.

@Glemmis sorry you went through that terrible experience. That dr should not have said they were concerned unless that actually knew the result was not good. How dare they raise concerns when they don't even know. I am glad you are ok. I would never see a GP about skin issues. While the nurse really got things wrong, my dermatologist is so skilled in diagnosis of skin cancer I would not see anyone else. I have seen this dermatologist for 25 years. I always go every 6 months but next week I will be checking if he wants me that every 3 or 4 months. I was on a 3 month regime when I had my first melanoma 20 odd yrs ago. 

arpie

GOOD RESULT!!  SO pleased to hear it is benign, @Glemmis - but that scanxiety just never goes away, does it?   That's bad they didn't get onto you straight after receiving the results tho!     They have NO IDEA the angst they cause ....

Thanks for telling us about the 'radiation melanomas'!!!  Hadn't heard of that one before!!

take care xx

Glemmis

@Cath62, I think for peace of mind at least six monthly checkups & then anything is picked up early. The GP who picked up my first melanoma was a particularly good one I think & once you are seeing a dermatologist you can get in early with any further concerns.

@arpie, I hadn’t heard of that rare melanoma either. I knew about Angiosarcoma & asked radiation oncologist about it before treatment & she said she hadn’t seen a case in 20 years but you don’t usually follow up with them years later. It usually occurs after 5 to 7 years. Dermatologist said I was also at risk of angiosarcoma because of lymphodema in that area. Something to look forward to🙄

Afraser

My breast surgeon is my lump man! He’s removed four in a decade (all benign), mainly because they will grow, get knocked and possibly infected. Another aspect of the ageing process!! I feel much more confident with his analysis and treatment than my very good GP, who after all is not a cancer specialist. 

Chevvy

Sorry to hear another little journey ahead of you... but so good that you are onto it and keeping up those skin checks... any form of cancer is so bloomin shit sucky.. I really hope the wait for your next excision isn't too stressful for you, and that they get it all in the next hit. 
Hubby and I stopped counting my skin cancer treatments at 180, got boring after that, lol... then got the bc diagnosis just for something a bit different, did treatment , on tamoxifen and have had 3 melanomas since... think someone "upstairs" is screwing with me 🤪..but where I'm going with this is.. has your oncologist/dr  suggested a PET scan... mines doing one literally after each melanoma... not only do I have enough scars on my body from  all the surgeries that you could literally  play join the dots,  but I think I am glowing green from all the scans... wondering if oncologist is being over cautious (if there could be such a thing)... but interested to know where others stand in similar situations and if so many PETS are that necessary... 
Take care, and hope your feeling a bit better about things now. 🤗

Cath62

Hi @Chevvy,

Wow 180 is bloody terrible. I think my dad has had some enormous amount too. Skin wise i have had about 40 excisions of which 4 melanoma. I just breathe deeply and I am grateful the melanoma was found early enough. 

This is the first melanoma post bc (last year). I was wondering about a PET scan too. I see the oncologist on 14th December and will ask about that as a possibility.

 I think while the whole idea of going looking is scary, I would like to not be left wondering.  I guess there are always the possibility of a rouge cell so maybe that's why a PET  scan after each melanoma, especially given bc too. 

I do feel better about things, now the results were made clear. Take care.

Chevvy

Good to hear your feeling better about things...all the best for your oncologist appt, will def be interested to hear their thoughts on PET.. 🤗

Cath62

Thanks @Chevvy

I will let you know about oncologist and PET but starting to think given melanoma is insitu maybe it would be unnecessary. We will see on 14th December.