2/6 nodes positive, but only offered chest wall radiotherapy after mastectomy. Is this normal?

Hi Daisy

I had two out of 6nodes previously positive, but had my chemo up front before surgery. They only knew about one positive node at time of diag & treatment plan. However I was strongly HER 2+ and large lump  bigger than 5cm. I  think it is these latter two features which resulted in chemo. I did not have full axillary clearance but instead radiotherapy to axilla x 15, followed by 5 boosts to tumour bed.

If in doubt about your own plan you should phone your BC nurse and ask to discuss.

Sorry not to be more help.

WallyDug

It’s really tricky to talk to them because I know they get annoyed. And I keep getting conflicting information so don’t know if I can even trust just makes me question everything. 

1. What was your onco type score if you did have one? And don’t mind me asking

Best check with your nurse. Explain that you are concerned and worried.  It could be because they are grade 2 perhaps? They are here to help and support. 

I had multiple tumours (small) and surrounding tissue (10cm) and 1 positive lymph node at grade 3 ER+ and HER- so mine was a full axillary clearance and mastectomy. They've recommended chemo post surgery (primarily due to my age and multi focal nature) before radiotherapy.

Not much help either I'm afraid xx

Hi Daizy, 

I’m glad you have raised this as I am confused by the different treatment people seem to be given with positive nodes. 

I am ER + & HER - with 1/6 nodes positive. Three nodes taken at lumpectomy (all negative) but a subsequent mastectomy (no clear margins) led to a further 3 nodes being removed & 1 had macro metastasis. Both the surgeon & oncologist were surprised at this result. I haven’t had oncotype (it wasn’t offered) but they did do Prosignia which showed a low likelihood of reoccurrence.

I haven’t had auxiliary clearance (deemed not necessary) or chemo (because of the Prosignia result) but I have now had 15 sessions of radiotherapy on the axilla only.

I can’t explain the difference with your treatment offer & I am similarly surprised that I don’t read many stories of people who have had the same as me. I guess you just have to trust the medical team but there’s been a few mistakes along the way with me which makes it hard.  

Hi It is so confusing - I had full aux clearance with 1 node postive out of 18 taken, lumpectomy with clear margins for er+

Consultant said need chemo even though only 1 postive node as he wants belt and braces approach for him he said oncotype percent is not tried and tested enough where positive node involvement.  Woukd be different if negative nodes.

My friend had 3 postive nodes with no chemo she thinks mine is overkill.

It is difficult to challenge a professionals decision I'm sure every oncologist would have a different view.

Re radiotherapy only need 5 maybe 10 sessions as all lymph nodes removed so only tumour bed - so I guess if I still had lymph nodes would need that area radiated.

Also I am low grade ie 2 with 5 % ki status.

Wish wasn't having to have chemo - I may still push for onco test.

I didn't have an oncotype done. My onc did use the NHS Predict algorythm on my data.  I was told right from the start that their very strong advIce was chemo first, then surgery, as i would limit the treatment drugs that they could give me if I had surgery first. Nevertheless, they did say they would do surgery first if that was my considered decision. They mentioned a newly NHS approved drug that i would be eligible for if the chemo did not work BUT only if I had chemo first.(that was the clincher for me, I did not want to start down a path in which I would have excluded myself from something I might need)

I also got anti-HER2 meds along with my chemo from cycle4 onward. They stopped these before surgery and then restarted them when I was having the RT about 6weeks later. I still go for these every three weeks (which will make 18 cycles of ant HER2 meds in total, making up a year of these treatments). I have three more cycles of these to go.

On top of this I take exemestane oestrogen inhibitor tabs daily. Anti oestrogen therapy started at same time as RT and originally was letrozole. Over and above, they are giving me Zometa to reduce the liklihood of recurrence in bones (every six months for 3years), due third dose this week.  I am very happy that they are chucking everything possible at my gremlin in the hope of stopping it coming back. 

Based on  NHS Predict I was told that I had a 57 per cent chance of surviving 10 years with surgery alone. With all these extras that I have listed, my onc says that I have better than 78 per cent chance, if I see it all through. This prediction does not factor in that I had the chemo first and had a complete pathological clearance or the effect of the pertuzumab, as I don't think that longterm survival effects from these factors are fully quantified/known yet to the extent that they can be factored into the calculations. However, onc says all of these things give extra chances for me.

Sorry this is so long.

Wishing you all the best.

WallyDug

Hi. I had mastectomy (my choice) and 1/23 nodes positive. I also had LVI and multi focal ( can aid spreading) however my cancer was 8/8 ER + grade 1. They said it was up to me if I had chemo as it only offered 1.2% benefit and I was already at 90% for survival in 10 years. I had a second opinion and was offered an octotype dx test as they explained how trials had shown they had been over treating women for years with chemo which itself can cause problems. I was told if my percentage benefit was 4% or more I’d be having chemo. We decided (both oncologists) that if my oncotype score was less than 25 (post   Menopausal) I wouldn’t have chemo. My score was 11 so decision made. I had 5 treatments of radiotherapy to chest only they said had if I had more positive nodes I’d have radiotherapy to my collar bone. I think it all depends on so many factors grade size type etc that many women have different sometimes conflicting treatment. We have to trust the specialists but do ask for a second opinion it really helped me. Good luck and let us know how u get on. 

Thanks for the update Gwills you echo my thoughts- 

I think Daizy03 has opposite problem concerned that may not be getting sufficient treatment. 

I think we have to feel empowered to be assertive with our consultants and tell them our concerns to seek clarification and reassurance - be more insistent until we feel satisfied with the answers. 

I’m sorry I have just seen your message now. It was all very overwhelming so I stopped going on here to read.

yours sounds very similar to this case. Except they didn’t do radiation to the axilla either. Only 5x radiation to the chest wall as there were precancerous cells. I spoke to them many times but they don’t seem concerned and keep saying it would be over treatment to even radiate the axilla. Very confusing- as I would prefer over treatment than the nasty disease coming back. 
What sort of mistakes did they do with you?