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Radiotherapy to breast/axilla/ supraclavicular fossa

CrisG
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Hello,

I have posted my story already, but haven't directly asked ver specifically about radiotherapy for 3 weeks to the left breast, axilla (had only sentinel node biopsy with 2/4 positive nodes + lumpectomy), and supraclavicular fossa. My oncologist said I needed these three areas irradiated as we don't know if any more lymph nodes are affected (I chose not to have axillary node clearance).

I would like to know if anyone had experience of RT in these three areas. I'm worried about the possible side effects such as lymphoedema and fibrosis and what I can do to avoid the them as much as possible. I also wonder if I can at all avoid the collarbone area? If I decide to have the Oncotype DX done and came back with a low score, would that be an option?

Just copying below my story (already had some replies), so you have more details and I don't have to re-write it all over again:)

 

Hello:) A quick summary of my situation:

I'm 58, fit, very healthy diet and exercise, weight on the low side. Stopped HRT 1 month ago (had early menopause at 33, so had taken it for a very long time!).

Had a supposedly sebaceous cyst (biopsy normal 5yrs ago, but decided to have it removed now) removed the area where the breast meets the axilla (left side)in August which turned out to be grade 2 invasive BC (10mm tumour), ER 8/8, PR  8/8, HER-2 negative. Second surgery end of September showed clear margins and 2/4 positive sentinel lymph nodes. One node was 10mm diam and had 3mm macrometastasis, other node 7mm with 6mm macrometastasis (no ECT in both). 

I was immediately told the next step would be an axillary clearance,  however,  it seems that studies are showing that Radiotherapy has very similar outcomes as ALND (and it's an option in the ESMO European guidelines). I have put this to my surgeon who took my case back to the MDT and since then I had 2 meetings with the oncologist. I have asked about the Oncotype test, but he said it would not be validated as I decided not to have ALND and we don't know the nodal status. I have called Oncotype DX company and was told I could still have the test privately and didn't need the results of ALND and could compare my case with others in the database.

As I didn't want to have the ALND, the oncologist suggested that I could have chemotherapy if I wanted, something he had only mentioned in the context of Oncotype score results in our first meeting. As I don't know if I would benefit from chemo, I declined and I'm going for RT, which will be given to the breast, axilla and supraclavicular fossa (which also worries me...), towards the end of November. 

Is anyone in a similar situation? I wonder about a second opinion and whether it's worth getting the Oncotype test privately, which would mean asking the hospital to order it and send a tumour sample.  I think it might give me an idea of recurrence and whether chemo would be an option. Not sure this will help to determine if the collarbone needs RT or not.

 

Lots of questions... thank you for reading! 

Cris

 

  • Hello and thanks for posting

    I am sorry to hear about your situation and appreciate making the right decision about treatment can be difficult.

    As you say there seems to be similar outcomes for both axillary lymph node dissection and radiotherapy for lymph node involvement, so often the choice between the 2 is offered.

    Whilst Oncotype DX or similar is useful to predict the usefulness of chemotherapy for early stage breast cancer it is not used to help decide radiotherapy treatment. 

    Lymphoedema is a possible side effect of both surgery and radiotherapy as the lymphatic vessels can be damaged during both these treatments. This can in turn affect the lymph fluid being able to drain from the past of the body treated causing a build up of fluid and swelling known as lymphoedema.

    Not everyone who has surgery or radiotherapy will go on to develop lymphoedema. Lymphoedema doesn't always appear straight away and can sometimes develop several years after the treatment was carried out.

    Certainly there are things that can help prevent lymphoedema such as exercising and movement, maintaining a healthy weight and good skincare in the affect areas. 

    As the supraclavicular area is a common site for cancer cells to spread to from the breast I think the team involved will want to irradiate this area as well.

    Do talk through any concerns you have with your team so they can talk this through with you and help decide the best plan of action for you.

    I hope others who have been through similar share their stories with you as well.

    Do get back if you want to or have more questions. The helpline is also open weekdays 9-5 on 0808 800 4040 if you prefer.

    All the best

    Naomi

  • Offline

    Chris 

    my oncologist told me the Oncotype is only to determine chemo or not , there was no information on my Oncotype Score regarding radiotherapy at all .

    If you get the score about chemo first that would be amazing , but I don't mean to sound blunt but if you don't get score and don't get chemo I wouldn't skim on getting radiotherapy also I would deffo try the radiotherapy at least then you have done your very best , I had aux node clearance and radiotherapy I'm in the middle of and I have found it no problem at all the breathing has been a bit tricky on times but feel great no other side effects 

    hope this helps sorry if it sound straight but it's a honest opinion . 

  • Offline in reply to CRUK Nurse Naomi

    Thank you so much for your reply, Naomi. Although I am aware of everything you said, it's reasurring to know that my understanding of the situation in correct.

    I do worry about the side effects of radiotherapy, but I think I should be positive as I'm an active person, have a super healthy diet and very slim. Hopefully those will be minimised. I have also stopped my HRT which I had been on since my thirties due to an premature menoupause.

    One of the issues that worried me a lot is lymphoedema though... I do hope the healthy nodes and vessels recover after the treatment...

    Thanks again. 

    Warm regards,

    Cris

  • Offline in reply to laraj

    Hi Lara,

    You're not blunt at all, and I don't want to skip the radiotherapy as I know it will treat the lymph nodes which might contain cancer, so really cannot avoid it:)  I'm glad you're finding no problems with RT! It's reasurring to hear:) 

    As to the Oncotype test, I'll see what they say about doing it privately.

    Keep me posted on how your treatments go:) Good luck:)

    Cris xx

     

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