Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Feeling discombobulated

KTatHome
Posted by

I’m hoping if I write this down that I’ll finally get to sleep.

31/12 started as such a good day, I woke up in a good mood, had a lovely morning walk in the countryside, decided to go home for lunch then have another walk with my husband in the opposite direction at the RSPB. Completely chilled out when my mobile phone rings and it shows it’s my hospital. Admin were ringing to book me in for an appointment with a plastic surgeon and they have a hard to fill appointment that afternoon that they are hoping I can get to. My mind computed the short notice was just so that an appointment doesn’t go to waste but I thought my biopsy results from my lymph node meant I no longer needed surgery so a little confused, and voiced that but admin assured me that they had been asked to ring me, so I accepted the appointment as there was enough time for us to go straight there (although I’d have preferred not to have my walking shoes on) and thought I’d ring my cancer nurse before we left to double check I wasn’t wasting an hours trip. 

I was/am a complete responder on Pembrolizumab but in March had a rogue lymph node removed that was growing larger while still on Pembro. Then in October I could feel a lymph node growing larger and a scan 2 weeks later in November confirmed it was 17mm instead of 8. By that time the 17mm felt like 50 but in the next 3 weeks waiting for a needle biopsy it began to shrink and I still can’t feel it. The histology report I was told confirmed melanoma but it was withering, I asked if that meant the full node dissection they were planning was no longer required and was told that’s correct. So I’ve had a relaxing few weeks where everything was right with the world. 

The nurse I rang read out a note from the system that the MDT thought I should have one node removed so that I can restart Pembrolizumab as adjuvant again and that the surgeon will discuss that with me. The MDT had met after my info that Pembro was working and no node dissection required, my mind is thinking ah, I had thought no surgery at all but it seems they want just one removed but that hadn’t crossed my mind as Pembro was working. Other thing crossing my mind is when is Pembro due to stop and when is it safe to stop ? So off we go to the appointment. 

We discussed my history, that I can’t feel the node, drs can’t now feel the node, that the MDT seem to be thinking the biopsy was inconclusive and that removing the node would give more info, that it’s difficult to do surgery on a node you can’t feel as the excision might not be made in the right place. This last bit didn’t compute as they removed one node in March that couldn’t be felt but the scan told them where it was and the surgery was laparoscopic. There needs to be some more discussion as the consultant surgeon that I saw had not been at the MDT, but he wanted to know if I wanted to go ahead with surgery if they could do it. For me that’s not a yes or no answer. I’m happy to go ahead with the best recommendation but I need to be convinced that it is best for me. I’m not concerned waiting due to Pembro working, I appreciate that surgery is often the best answer to ensure cancer removal but I value my mobility and for me because of previous involvement of many lymph nodes a system treatment has been the answer. 

So I will get a call next week to advise me what course of action is being recommended. 

I think if there hadn’t been noisy fireworks I might have gone to sleep, happy new year what ever it brings. 

KT 

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MoiraA
Posted by

Hi

I hope you got to sleep, sleep in and don't read this reply for many hours.

If the node has shrunk, surely your Pembro-enhanced immune system has dealt with it and surgery is not necessary.

Of course you should take my opinion with a pinch of salt as I am not a professional and I do not trust doctors (it is a phobia, not rational).

I certainly could not cope with a last-minute appointment. I have to have lots of preparation time.

At least your surgeon sounds nice and is keen to do what is best for you as an individual rather than being sure that s/he is always right and that surgery is always best.

All the best for the new year

Moira

Sailor2
Posted by

Happy New Year KTatHome,

An odd situation you find yourself in.  If the Pembro is working, why would they need to open you up? Is it a case of Pembro is working -unless its not working? Or is it more like the SNLB where the surgeons like to know definitively what is going on based on biopsy evidence; despite there being no direct benifit to the patient/ cure?

Where is this lymph node? Having them removed from your groin really gets in the way of walking about or playing netball...  Having said that, I always feel great post surgery, knowing that a piece of melanoma is now out of my body!

Like you I am not opposed to surgery (or any other reccomended treatment). Though I do sometimes find that there has to be more benifits to a course of treatment than just the doctors "knowing something". Especially if means I'm going to walk badly for a month!

Anyhow, I'm sure you will make the right decision, once you've had a little more time to think it over.  Here's a great piece of music to listen to whilst you do. https://www.youtube.com/watch?v=_5kKo2_2MzI&list=PLouMBp6i2cO9rIT39Mnj-4ap93dOe1ZzY&index=34

Take care

J

Don't wait for your ship to come in, swim out and find it!

latchbrook
Posted by

I hope you did manage to get to sleep and have managed a nice, long lie in this morning.

Hopefully, writing down all that you're feeling and all that you went through yesterday has helped clear things up in your mind. It must be horrible thinking that you're following one course of action only to be told that it might now be another.

xx

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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KTatHome
Posted by

Hi Moria ( ) luckily luckily yes I did get to sleep, I was so chilled out yesterday but in one of those I’m not worried, should I be worried ok, now I’m going to worry a bit about what might be in coming up, do I have a decision to make, what was it that happened, did I get all the info there was to get kind of replays. I feel much better having written that to get it out of my head and reading yours and J’s () reply. I’m glad you would have reached the same conclusion, Pembro working no need for surgery, sounded logical assumption to me, then the is it working or not working doubt crept in thinking how it had flared up in the first place. I must just shelve concerns again til next week as with no more info I could continuously go round in circles. He was a very nice approachable chap though, just unfortunate that he hadn’t been at the MDT and therefore couldn’t solve my what’s going on train of thought. 

Oh J () what a great piece of music, the name of the tune made me laugh to as Lily is the name of next door but one’s cat that keeps prowling round our garden during the night setting off a security camera my husband has in the garden. (It’s a gadget thing that my husband said after ordering it that I was buying him for Christmas !!) The node in question is in the pelvic side of my groin rather the in the leg close to where the last one removed in March was. Back in November I understood the logic of having a full dissection when faced with a visible lump that I could see and feel, and thought of missing Netball again shelved. 

Oh well in 2015 I didn’t think I’d see New Year 2017 and here we are 2020. I’m self analysing here but I think being a complete responder and off treatment has been a gold medal I’ve been aiming for again but a bronze or silver place should also be enjoyed shouldn’t it. New Years resolution should be for me don’t over think things, as time has a way of working things out without the worrying part.

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

KTatHome
Posted by

Hi , you know a few years ago I might have gone into a meltdown of anxiety, so I should have remembered the 3 positive things and congratulated myself for having a great morning walk, coping with the curve ball at the time, and after my second walk and trip to hospital my fit bit should be very proud of me !! 

I think things if not clearer are able to be shelved till I get more info. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Sailor2
Posted by

"a bronze or silver place should also be enjoyed shouldn’t it."

Definitely!

Glad you liked the tune.

J

Don't wait for your ship to come in, swim out and find it!

lgrgdg90
Posted by

Sorry to hear about what has happened.It couldn’t have come at a worse time with new year just starting. I am sure you will cope well with this as you seem very level headed and have given others such good advise . When you hear the full facts you will be able to sort what is best for you. I had a full left groin dissection. They didn’t find anything in the nodes but I still went on to get tumours a few years later. I am on Nivolumab and just had 20 th dose yesterday but no scan results.  Will be thinking about you and enjoy all those walks. My husband and I tried to walk twice today but it got cold in 5he afternoon so we cut it short. I intend to remain positive this year and tackle each hiccup as it comes Hope so anyway. 

Lgrgdg90
KTatHome
Posted by

Hi , thank you for your kind words. I hope the scan results you’re expecting come in soon, and favourably. I had a look, I had #43 of Pembro at the start of December. We will have to have a positivity pact together .

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

lgrgdg90
Posted by

  Yes I agree x

Lgrgdg90
Katybb
Posted by

Hey , I think discombobulated is very apt description for this set of circumstances!

Now please excuse me because I’m drunk, and thinking/typing is extra challenging...

I have a science background (*disclaimer - although not a medical expert) yet I’m becoming slightly more sceptical of the need for surgical intervention. I believe that historically, there has been a wealth of anecdotal evidence suggesting we live with primary tumours for a long time, which actively suppress any secondaries. Death from metastatic cancer isn’t all that helpful from an evolutionary point of view (the tumour’s evolution that is). Surgical removal of primaries removes that inhibition, floods the body with growth factors for repair purposes, and may lead to uncontrolled growth of secondaries. Now obviously there’s more to it than that, but I’m drunk and this is hard work. On top of that, my personal belief that surgery is physically shaking all those cells around, it’s a risky business...

If the Pembro is working, which is clearly is, then is the benefit of further surgical removal great enough? It’s obviously never an easy or clear cut answer, but it’s something I’d give a lot more thought to now (she says with a new biopsy scar she didn’t think twice about)!

Just when you think you know where you’re at! 

Hope the chilled out state is persisting. X

Kate

KTatHome
Posted by

Hi , I bet writing discombobulated was difficult at that time of night even if you hadn’t been drinking! , so thank you for making the effort to reply.  Back in November I was all prepared to have lymph dissection to prevent a local recurrence again, but as it’s now shrunk in size but if nodes there are going to keep yo-yoing, most complete responders (I think) stay as complete responders, so I think I’m a bit of an oddity at the moment. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Katybb
Posted by

What’s your gut saying about it? 
It must feel like a lot of pressure when you actually have to get involved with these kind of decisions. It’s fair enough to do as you’re told when it’s a clear plan and the doctors are sure. I know I felt surprisingly uncomfortable about having a say in which moles get biopsied - like don’t put this on me to decide!!

Xx

Kate

KTatHome
Posted by

My gut is saying that I don’t have all the info yet, that a decision is only right at the time it’s made on the info provided so I’m just going to have wait for the next phone call. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Katybb
Posted by

Eminently sensible. X

Kate