Just had all Lymph nodes removed right armpit

Hello LabradorMum, gosh, I’m sorry to hear of the rare type of skin cancer you have and the problems you are having after having your lymph nodes removed, I hadn’t heard of your type of cancer either so I’ve just googled it. 

As I understand things, you’re asking for people’s experience of lymph node removal coupled with nerve or muscle problems, to get some hope that the dr who told you this might be permanent is wrong, and perhaps to get some tips on coping with the pain and getting comfortable at night to sleep. 

I think you are in the right group here as you said there was cancer in your lymph nodes but, good news not all of them. People who come into this group might have a wide range of cancers and might have some experience with your pain. I hope someone pops in to help you with their experience but just in case I’d like to suggest you you possibly contact your skin cancer nurse at the hospital to talk to them about how you feel, and if they can offer any suggestions, or  you could try the Macmillan Support Line 0808 808 00 00 which is open from 8am to 8pm, they could get a Macmillan nurse to call you back or you could put a question in the ask an expert section I will put the link in for you below. 

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_a_nurse/discussions

I know that latchbrook has spoken to you in the new to community section and suggested joining the melanoma group to find people who have had groups of lymph nodes removed, and that you have posted there, I’m from that group too as I have /had advanced melanoma.  In March I had laparoscopic surgery and no drain was required but I did have a strange sensation, above where they removed the node, a few weeks later which was described as possible nerve damage. They said the pain is worse when the nerves are trying to repair themselves, and that the pain can last a short time or about a year and occasionally never goes away. I luckily only had the weird sensation for a few weeks. That’s why I’m thinking you might want to talk to your own specialist cancer nurse who can liaise with the surgeon you had. 

I am hoping that going forward you might get some support here, I think you mentioned you might have radiotherapy, that isn’t generally given as an adjuvant treatment for melanoma, like it is for many cancers, as it isn’t successful for melanoma. We have targeted therapy drugs (for those who are BRAF positive) and immunotherapy drugs. 

You sound very much in pain, and I hope you get the support you need somewhere. If I can’t help with my experience I hope I can at least cheer you on from the side lines, all the emotional stuff we go through, it’s the same what ever cancer we have. 

best wishes

Thank you KT for all the information im not sure I have a specific cancer nurse, I have been seeing the nurses that work with my surgeon every Tuesday since the operation to keep a check on the wound that is across my armpit and down my side and the drain site and also check my drain and they have said the same as my surgeon about the sensation and that I will always have them, My surgeon said that this time I would be having radiotherapy as opposed to last time as he believes either some of the cancer was missed last time or it had moved to the lymph nodes but was too small to see or was missed, with it being a slow growing type he believes it has had the whole 7 years or there abouts to grow so I suppose they are making sure this time, also he says I will be having regular scans this time as last time they also said that was not what was required. Yes at the moment I'm very uncomfortable but I'm trying not to let it get me to fed up although it is hard. I would be more than happy for you to be cheering from any line as I hope to do the same for you and anyone else that needs it, I try to look at things as it is what it is I cannot change what has happened but I've just got to get on and do this and beat it.

Thanks again Heather x

Hi LabradorMum, when I went for my preassessment for surgery, I saw a nurse, and coincidentally I saw the same nurse when I went back to have the stitches checked. Separate to that I have a business card which has the names and contact numbers of two specialist nurses they are the people I can contact if I have any questions. The also have input to the multidisciplinary team meetings when surgeons and oncologists and radiologists discuss any new treatment plans. When you next have a meeting at the hospital ask if there is anyone you can ring if you have questions after you have left your follow up appointments. If that’s a while away, do you have a hospital letter with contact numbers on them, mine has the numbers for the oncologist, their secretary and the nurses.

I am sorry they seem so definite that the damage will be long lasting, but I applaud your attitude for coping. 

Best wishes

Hi KT yes I will ask. I had no input at the meetings the surgeon, oncologist or any of the doctors who discussed the plan of attack so to speak I was just told this is what we are doing and this is what you will have done it all happened very quick within 3 weeks of going for the scan I was in hospital having the operation I suppose that is good in a way as I didn't really have time to think about everything within 2 weeks I was winding down my Salon for closure it closed on 29th June I was in hospital on the 30th having the pre op and then surgery on the 1st, I have also been told I now run the risk of lymphedema for the rest of my life but no really been told as yet what if anything to do about not getting it, I will ask tomorrow as I go to the usual nurse to have the drain and wound site checked

Regards Heather x

Hi Heather/ LabradorMum, do you have a Macmillan Information Centre at your hospital, at mine there is and they have a big selection of Macmillan booklets that might be useful to have at home to browse through, and staff there to chat to about for instance local support groups or perhaps exercise or art classes that are run nearby to help cancer patients. Sometimes the classes are in a Maggies Centre. 

Booklets are also on this site to download or order to be sent by post. 

https://be.macmillan.org.uk/be/Funnelback/search.aspx?query=lymphoedema

i hope you can see the link above for one on Lymphoedema that can be down loaded. 

Im sorry to hear how you’ve lost your business, that sounds really tough, but in another way as you say good that things moved quickly for you. You might want to ask when you are ready about help getting back to work, have a browse through the ask an expert section when you are ready. I haven’t gone back since my diagnosis but it’s a discussion that often comes up in the life after cancer group. 

Good luck for your appointment tomorrow, I try and write down the questions I want to ask now or else I forget to ask them, as some medics start to anticipate what questions you might ask and I loose my train of thought. 

Best wishes

Thanks KTatHome I will look into the brochure to download, and at a further date look at the back to work issues, I will ask also about the macmillan support at the hospital tomorrow to see what they have.

Regards Heather x