I would be apt to say your team knew best because after all they’re the experts but to be honest that’s weird. Most people just do radiation unless like all sentinel lymph nodes are positive and then they want to just go in to see how extensive it is. But lymphodemia is a real risk and a lifetime sentence so they tend to keep your lymph nodes alone as much as possible. Did they tell you why they wanted full axillary clearance? And also, even if they did do that, they should still do radiation. That’s just an automatic treatment if you’ve got positive nodes or just do a lumpectomy.
Kay i really appreciate your responses on this, and i would be too if i wasn’t getting conflicting responses.
Ive just had a consultation with my OG consultant, who ive disvovered is neither surgeon or oncologist.
Hes basically just told me that not doing the removal is like a death sentance as in his words there could be a massive node in there, when i challenged him with the studies he just laughed.
Isnt the point of slnb to gauge this and act appropriately or couldn’t there be an argument that we could all be walking round with a massive lymph node in our armpits and we should all be getting cleared out.
Anyway ive pushed and got a consultation with the oncologist on monday. Although in addition to all of this i’ve just found out they didn’t do an onco test, again because of my age.
I’ve also engaged a private consultant who from a quick glance at my details agreed radio would be best considering that the cancer found was just over micro size. Im seeing her tuesday.
Just worried about all this delay if indeed the op is my only option
Dont ask me what my problem with the op is but my gut is just telling me its not the right thing for me
And as for reasoning he just keeps saying because you’re young. To which i’m thinking so you don’t mind killing off all the old dears, make it make sense!
Sorry im ranting and i know this all about keeping me alive aslong as possible but it’s not like i’m asking if we can do raiki on the axilla to make it go away.
And sorry one more rant how come if they find micromets they just leave it alone and no one ever talks about it again but if you’re a tiny bit over that size they want to clear you out.
Sorry im not actually crazy but i just feel like i need to let all of this out
@Gigifaz I’m not in the same situation as you, but thought I’d respond as I did have to make a choice on whether to have Axilla dissection surgery or be referred to Oncology (to determine treatment plan); In my case 4 lymph nodes were taken as part of my SLNB, of which 1 came back positive with macrometasis (>2mm) and some soft tissue deposit also affected. So I made the decision to go for Axilla surgery after weighing up and pro’s and con’s for my cancer profile. I created a topic to get input from others on the forum and I also updated it with my decision, along with what I found out here. Just sharing in case some of the information there is of use to you, but please bear in mind each of our cancer profiles will be different, so there is never really a direct comparison you can do.
Regarding the rather strong recommendation that was made for you to have surgery, I would say the questions you have raised are certainly valid. During the course of my treatment journey I have continued to ask questions even when the answers were never really forthcoming and sometimes not straight forward.
I’m not sure which country you are being treated in, but if in the UK treatment offered or recommended or not offered would be based on NICE guidance, so worth having a look at that before you meet your team next if you would like some background information in preparation for that. NICE guidance for Primary BC surgery can be found here.
And the NICE guidance for radiotherapy can be found here.
Uhhh yeah. I don’t know what to say. I want to make you feel better but what I am reading is ludicrous. I mean his response below is just dumb.
“hes basically just told me that not doing the removal is like a death sentance as in his words there could be a massive node in there, when i challenged him with the studies he just laughed.”
And it’s dumb because exactly what you said. “Isnt the point of slnb to gauge this and act appropriately or couldn’t there be an argument that we could all be walking round with a massive lymph node in our armpits and we should all be getting cleared out.”
But I do want to reiterate I’m not an expert or a medical professional. But I’m quite well read and had breast cancer. You are doing exactly right in pushing for other experts to decide your care. And standard of care for a hormone positive, Her 2 negative tumor is to do an oncotype test. Grade can hint at what your score will be but it’s not absolute. I’ve seen many grade 3’s here score quite low on oncotypes and not need chemo and many grade 2’s and even a grade 1 score high enough to need it. I’ve think you’ve been given some links to let you know what you should expect from the UK healthcare system but I don’t think I’ve ever seen one person with only one positive sentinel lymph node be told they have to have axillary clearance or their life is in danger. If that’s the only lymph node removed I guess there can be an argument but I think you said you had two removed and only one was positive? The chances of you having some other big butted node out there isn’t great if one of your lymph nodes was negative. Cancer doesn’t tend to skip around like that with lymph nodes. There’s an order with how it moves through them. Anyway some people may choose axillary clearance because they just feel better that way. But most don’t. They take their radiation and move on. And you also need to find out if chemotherapy would be of benefit to you. You’re young and can easily withstand if it is but there’s no need to do it if your tumor cells won’t respond. At least not with only one positive node. Anyway an oncotype score will suggest which way to go. Good luck!!
Thanks kay, i find consultations with him really negative. And believe me i don’t need things sugar coating but what i do need is a discussion and a plan around positive actions. I think i need to wait to spk the ocologist on monday but nice to be able to voice it.
Really appreciate you sharing that @TDG . Really helpful.
As you can see from my messages i’m feeling quite frustrated. I know this all part and parcel of the massive s*** show that is cancer. I just want to make sure ive got the right opts for me
@Gigifaz I’ve just re-read the comment Kay highlighted from your original post and it certainly does sound over the top. One thing I have noticed is that the way information is portrayed and shared does differ depending on who (type of consultant) you speak to as I too did get second opinions (surgeon, pathologist, oncologist) at key stages during my journey when I felt I wasn’t being given all the information I needed to make decisions (I think it partly boils down to the level of trust where if you aren’t given the rationale for what is being said when you ask for it, the trust goes downhill, at least that’s they way I felt looking back in hindsight).
Regarding the section of the NICE guidance that would be relevant for your conversation on Axilla surgery vs. Axilla radiotherapy, it’s the one below. From the info you have shared alone (not sure if there are other finer tumour pathology factors involved though) it wouldn’t seem unreasonable at all to challenge why surgery was strongly advised, instead of radiotherapy. Just on a side note, if I only had a single lymph node involved, without soft tissue deposit I would have chosen the path of no surgery (but am content with the choice I ultimately made with the facts & input I received by getting information from a pathologist/oncologist - peace of mind and being able to better tailor my individual post surgery oncology treatment were my reasons)
I hope some of the below is of help. Good luck for your next appointment, and let us know how you get on. Xx
p.s. I would also ask your oncologist about having a Oncotype test when you meet next week. And if not offered ask for rationale - something that’s broader than just saying age as I don’t think that in itself alone would drive the decision. In my experience I found information more forthcoming when I spoke to my oncologist when compared to consultations with the surgeon.
Evaluation and management of a positive axillary lymph node identified by a sentinel lymph node biopsy (in people with a normal preoperative ultrasound-guided needle biopsy)
1.4.7 Offer further axillary treatment (axillary node clearance or radiotherapy) after SLNB to people who have 1 or more sentinel lymph node macrometastasis. [2018]
1.4.8 Discuss the benefits and risks of not having further axillary treatment after primary breast-conserving surgery (within clinical trials where available) with women who:
have 1 or 2 sentinel lymph node macrometastases and
have been advised to have whole-breast radiotherapy with systemic therapy (which may be endocrine therapy). [2018]
1.4.9 Do not offer further axillary treatment to people who only have micrometastases in their sentinel lymph nodes after primary surgery for invasive breast cancer. [2018]
1.4.10 Do not offer further axillary treatment to people who have isolated tumour cells in their sentinel lymph nodes after primary surgery for invasive breast cancer. Classify this as lymph node-negative breast cancer. [2018]
Thankyou @TDG. i really appreciate you coming back to me and i know theres no simple answers to cancer but what you said about the trust is paramount. I do unfortunately feel a break in trust between myself and him because i haven’t been given the options and im not entirely sure the statements hes making are based on clinical info or just what he feels about certain approaches.
I also appreciate you sharing your story and reason why you made your decision.
As i say i think monday and tuesdays meeting will be quite important for me in making my decision
I had one positive node out of two removed and was told my plan was full removal. Post axillary clearance another 1 out of 17 were found positive.
i didn’t question the plan, due to shock I think (up until then, no evidence of lymph involvement). I also felt confidence in my surgeon maybe…
would I have preferred radiotherapy? One year on, no I don’t think so. For me, I needed to know how many and all out. But that’s just me, and I had 1/2 positive nodes.
I absolutely believe in options, clear honest information exchange and patient choice though, which is what I think you are not getting. Incidentally I had radiotherapy as well so it wasn’t either/or for me…
Appreciate you sharing your experience and you’re quite right. My consultant is quite the alarmist and perhaps his dramatic talk his pushing me further away from doing the op.
I think i need to have my meetings monday and tuesday and decide informed from there.
I just thought id update you whats been happening…
So everyone seems quite reluctant to say what they would do
The private consultant certainly agreed that radiotherapy is how a lot of countries are now treating axilla treatment and has referred me to a private onc to discuss further.
I also met the nhs onc on monday and while they were reluctant to say yes that is a good treatment option they certainly didnt seem to think it was a terrible idea and was generally less dooms day about the whole thing which has calmed me down somewhat.
So the upshot is after all of this ive asked for the op to be rescheduled.
I have to admit im feeling like a bit of a plonker now and i think i took the node news worse than my original diagnosis. Dont know if thats normal or not but now having spoken to some ladies with node involvement who have gone through it, its given me a bit of a call i have to aswell.
Cancers shit isn’t it? I wish i could say i’m growing as a person from all of this but the truth is i’m not. Just trying to plod on the best i can
Hi @Gigifaz, thanks for coming back to let us know how you’re getting on.
And I’d like to say what you’re feeling is totally normal/reasonable, at any rate what I’ve lean’t through this ongoing journey is whatever you feel at any point in time is right/normal, irrespective of what anyone else has felt or hasn’t felt - as we can’t really compare ourselves to others. We each have our own journey to travel, getting support from those around us and this wonderful group of BC’ers along the way.
It’s such a rollercoaster, with the ups and downs and I don’t know if I’ve grown as a result of it but it’s certainly shown how resilient we all are in the face of adversity, taking one step at a time regrouping at each decision point. You’re doing great, and I’m glad you managed to speak to a few different consultants to help you make the choice you are most comfortable with.
In my case no further positive lymph nodes were identified in the axilla surgery after the one that was identified via SLNB. There were 8 weeks between my original surgery+SLNB and the subsequent axilla surgery. I know you were worried about the time between your original surgery and the axilla surgery, so just thought I’d share my experience as an example of where the time between the two surgeries didn’t really make a difference in terms of further nodes being affected. However the wait & decision making was mentally challenging with thoughts running away at times, so I can relate to what you have been going through.
The next step for me is radiotherapy starting in 10 days time, which was another decision I had to get a second opinion on to make as it wasn’t straight-forward with different points of view from two different consultants & the choice for me to make.
Good luck and come back if you have any other questions or just need a sounding board.