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Rads instead of node clearance

4 REPLIES 4
Member

Re: Rads instead of node clearance

Thanks ladies that helps a lot, I really appreciate you taking the time to reply,

much love x

Member

Re: Rads instead of node clearance

Hi, I’m currently 8 sessions into 15 of radiotherapy for my left breast, 26mm ductal cancer with the sentinel node affected, but not the second out of the two they removed. My ultrasound suggested my nodes were clear. I wasn’t given the option of full node clearance. I was told that because of the involvement of the sentinel node that radiotherapy would be extended to cover my lymph nodes. I do believe, though not sure, that the risk of lymphodeoma is slightly lower with radiotherapy than with full clearance. So that is what I am undergoing now. What I didn’t realise until I had my first review after 5 sessions, was exactly where they direct the radiotherapy for the lymph nodes. I somehow thought it was under the arm around the area if the scar from the node testing. But I’m told it’s actually just below the collar bone, and I was advised the cream the back area as far as I could reach, as they direct beams from behind. I certainly seem to spend at least 20 mins in my session, with the machines moving around and blasting from several different directions.

So far I am pleased to say that I have not noticed much effect, though just a glimmer of a faint rash appearing. The tiredness is more to do with all the travelling involved I think. Hope that helps.

Member

Re: Rads instead of node clearance

Hi Ruthie

 

That’s a tough call to make. My consultant didn't give me the option - he did a full axillary clearance along with the full mastectomy because all 3 biopsies of the sentinel node were positive and he made the right call, as 19 of the 21 nodes were infected. I too had had a clear ultrasound but I suspect it was a lazy one because another radiologist with a different approach came back with three areas of cancer in one breast. Then I had chemo, then radiotherapy (but not of the armpit. I did wonder why but now I understand). 

 

I thought I’d alert you to possible downsides to axillary clearance. Inevitably there is nerve damage and you can find yourself with numbness of the upper arm. Mine is only just coming to life again after 11 months. Cording is a very common problem and I have to say that, if it’s not kept at bay or under control with daily and repeated exercise, it’s pretty painful. As Chicks said, there’s also the risk of lymphodoema, which I’ve escaped so far, so you need to ‘massage’ the arm regularly into another lymph system, like in your back or chest. Then of course you have to be hyper-alert to any injury, insect bite or whatever and no injections or cannulas on that arm/hand. On the HUGE plus side, the risk of cancer is removed and the source of any spread is gone for good. Personally I think the discomfort is outweighed by that.

 

Radiotherapy is considered the best treatment against active cancer cells (according to my oncologist). You may be lucky like me and barely notice the treatment. You may be unlucky like a few and practically be turned into a cinder. You could do research but a lot depends on the type of person you are. I would have been scared witless by what I found out because I don't have specialist understanding to put it in context.

 

Could you ask what the oncologist recommends and not allowed him/her to prevaricate?  They have the specialist knowledge after all. It seems unfair to put such a huge decision on you without a lot of information to help you decide. Good luck regardless,

Jan

Member

Re: Rads instead of node clearance

Hello Ruthie, 

I have not experienced this but just wanted to acknowledge the dilemma for you.  I hope someone comes along who has more knowledge and /or direct experience.   You may want to consider the "someone like me" Service or have a chat with the nurses. 

 

I so hate it when we are asked to decide things if we do not have adequate info.   So I hope they have given you the appropriate info listed in a Pros and Cons style/easily digestible format.   I think there have been trials on this (AMOROS but my memory plays tricks.... Of course I blame it on the hormone treatment ) and a number of meta-analyses so I am sure they could give you a helpful summary if not already done.  I think the main trials gave the edge to the radiotherapy treatment with reduced cases of Lymphoedema being a positive as well as reduced infection etc.  However, increased radiotherapy carries it's own risks.  I suppose if it was me I would want to know the quantified risks and benefits of each treatment.  

Best wishes to you Ruthie and I hope you reach a decision you are comfortable with, 

Chick 🐣 x

Member

Rads instead of node clearance

Hi, I have to decide between full node clearance or to extend rads to include armpit. Had anyone gone down the radiotherapy route? 

The u/s at diagnosis showed no involvement but surgery 10 days later had 3/4 involved, 1 macro 2  Micro mets.

ive heard of plenty of people who’ve had surgery but none who chose radiotherapy, (apart from anecdotally and they had recurrences)

 any advice/opinions would be very very gratefully received x