Rads to supraclavicular / neck nodes necessary?

[Guest user]

Thanks Linda
You are right, my onc is being over cautious because of the pleomorhpic bit, suggesting that my ILC is a bit more stubbon then normal. Thanks for your info, I wasn't really aware that rads were stronger and more important than chemo.
I keep changing my mind, and I would hate to turn it down, and then forever worry about if I've made the right decision. I'm just worried about the possible side effects, especially this nasty lymphodema. I'm a very active, practical and outdoor person (in my job and at home) so the thought of having a long term arm problem is horrible. But then not as horrible as the thought of not getting all the cancer and it coming back. Arghh sometimes this all gets out of proportion.

Thanks for the advice, you are right I need to talk this over with the helpline and my onc again and get some better info and stop stressing over making a decision. (easier said than done!). Thanks V x

[cornishgirl]

Hi VJ, it may be an idea to have another chat with your onc about why she thinks radiotherapy to the supraclavicular nodes may be justified . it may be just a precaution as i think pleomorphic ILC is a varient or subtype of ILC and so may sometimes be treated slightly differently to classic ILC ,though maybe she is just being over cautious ,but she would be the best person to talk to about why rads to your clavicle area has been offered. Its proberly worth remembering also that while chemo will hopefully zap any stray cancer cells that sometimes can be left behind, that radiotherapy is 2nd to surgery in cureing the desease ,with chemo and other targeted therapies falling behind these 2 treatments so its maybe just a bit of extra insurence zapping the nodes aswell. You could also give the helpline on BCC a call, as they may be able to help you further ,but proberly the best person to discuss it with would be your own oncologist. Its difficult knowing what to do for the best sometimes but at least if you get some answers to your questions you will be able to make a proper informed decision.
Hi Chatty Katty, regarding the stageing of cancer ,stage refers to the size and spread of a cancer, while the grade refers to the cancers personality, ie slow growing ,intermediate,aggressive. If the tumour is larger than 2cm but not larger than 5cm and there is no cancer in the lymph nodes, this is classed as Stage 2A in cancer Stageing,there is also a stage 2B which is where the Tumour is larger than 5 cms and has not spread to the lymph nodes. Both of my Primarys were also Stage 2 due to size, even though i also had clear nodes.
Best Wishes to you both , Linda x

[Guest user]

Thanks Katty

This is why I'm confused as it seems that you only get supraclavicular if you have +ve nodes. I've even looked up the NICE guidelines and they say that I shouldn't have been offered the extra rads.

I should point out, I'm not turning down rads - I am having the 15 sessions to the whole breast area and additional 8 sessions to the tumour site, but I just can't see the junstification for having even more radiotherapy than this.

[Guest user]

Hi yeah I had 6 out of 18 nodes positive, however the chemo did zap them...as mine is tn I was happy to have anything that improved my chances. I finished rads last Friday, and so far been absolutely fine.

[Guest user]

Thanks Katty, were you axillary nodes positive??

I aksed my surgeon for his opinion and he said there was no reason to do the supraclavicular, which is why I'm so confused, like you say double insurance - seems crazy to turn this down, but just can't convince myself that I should have this treatment when there is no medical justification.

[Guest user]

Hi I've just finished rads to chest wall and supraclavicular nodes. You say you are stage 2 yet have clear armpit lymph nodes, a usually if these nodes are clear our are stage 1. My onc told me even though there was no cancer viable in those nodes, they wanted to zap me as a belt and braces approach, as mine is grade 3 and is tn, so chemo and rads are the only option. They tend t zap it justoast double insurance that it kills off a stray cells and this area would be the next portof call, so to say!
When you speak to you onc ask them to clarify the reasons behind them making this decision.
Good luck x

[Guest user]

I'm so confused. My onc has offered me rads to the supraclavicular nodes in the neck, but this seems against all the medical advice. My axilla (armpit) nodes were clear, so there is no reason to have these additional rads. The onc said she had a "gut" feeling because my ILC is classed as pleomorphic, so is slightly different but is still a grade 2/stage 2.

If i go for the extra there are more side effects and possible nerve damage problems so there is a serious downside, not to mention the extra radiation received but at the same time should I take everything offered?? Already had surgery and chemo, so am sure it must all have been zapped by now, and with clear nodes it should be fine. I'm acutally angry at my onc for even mentioning this and putting me in this position, have spent the last 2 hours googling this and can't find any reason to have the additional rads.

Arghhhh. any thoughts / experiences appreaciated. Vx