From reading other messages it seems very common for an axillary node clearance to be carried out if there is a positive sentinel node.
I had 3 sentinel nodes come back positive out of 5 (3 showed up as hot nodes) for a small amount of macrometastasis (don’t know the size) however there was no discussion during my results, post WLN surgery, to suggest axillary node clearance any time soon. Due to the sentinel nodes being positive it’s likely I will need chemo (grade 2 2cm er + her2-) unless if go for optima and that changes the plan. My letter then said recommendation from MDT is axillary clearance after chemotherapy with a question mark…
Does anyone know from their own experience why axillary clearance isn’t done sooner to check from any further spread? I’ve had my bone scan which is clear and ct on Tuesday then oncology meeting 19th!
I didn’t have any spread to my lymph nodes so I can’t answer your question. Hopefully somebody will answer from their own experience.
However, I would suggest you call the BCN nurses to discuss this with a medical professional as you have to wait until the 19th to speak to your oncology team. ( Although for me my breast surgery team were separate from oncology, although they do work together. From my experience it would be the breast surgery team would would be arranging a clearance if required)
You can contact the nurses her, phoning will get a quicker response and from my experience talking is easier for a discussion.
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I hope you get the answers you need nd wish you well on your journey.
I was similar to you.
Had mastectomy and one lymph positive for micromets.
No axilliary clearance!
It has played on my mind so will be interesting to see what your nurses say.
Finished chemo and radiotherapy and now on letrozole for ten years
I had stage 3 bc er+ pr- with 3 of 5 sentinal nodes affected after mastectomy. It was decided to start chemo was more important than to remove rest of nodes so i had chemo and 3 months after it finished i had node clearance then radiotherapy. I dont know if you will follow a similar plan but your consultant will be able to tell you x
My surgeon recommended radiotherapy to treat the nodes instead of surgery due to a 30% risk of lymphodema. I only had 1 positive node though (although they only removed 2). I was a little worried about not having the clearance but as it happens I had to have chemo anyway so I’m hoping that that, coupled with radio and anti hormone meds, will be enough to mop up any strays…
It sounds like for your own peace of mind, it would help to make a list of questions and raise them at your next appointment with your consultant/breast team. I suggest this as the questions you have are probably quite specific to your own BC profile.
Regarding the comment you make about “it being very common to have axillary node clearance when there is a positive node”. That is actually not the case these days, where treatment is much more individualised. This is how a pathologist I spoke to while I was waiting for my CT scan result explained it. I spoke to several medic’s while waiting for results and before making decisions on options that were given to me at various points, as I wanted to make as informed a decision as possible with limited information when I was going through my own diagnosis and treatment journey. She said if you had asked me this question a decade or more ago, the answer would have been different. Axillary clearance was offered/recommended for anyone who had a positive sentinel node (macromets), however now there are other more advanced diagnostic & treatment options which mean additional surgery can be avoided. Along with any surgery comes risks, so if they don’t consider it to be the best treatment option they wouldn’t recommend it. And she said the discussion about whether Chemo would be beneficial would only happen after the CT scan result is available.
Based on what you have said they are doing the required diagnostic tests (Bone and CT scan) first to establish whether there was evidence of metastasis. Based on my experience, I wasn’t given meaningful options until the CT scan result was available and the wait for that result was one of the most difficult. And I now understand the reasons for that. It’s because if the CT scan had shown spread to another organ then Axillary clearance wouldn’t have been recommended as it would serve no purpose (According to the pathologist I spoke to, Axillary Clearance is used as a oncology diagnostic/treatment input, to customise the next course of oncology treatment whether that’s the option to participate in a Trial such as Optima or have a genomic profiling test such as OncoTypeDX or Prosigna to determine chemo benefit or something else). Chemotherapy would have been the most likely next step for me, if my CT had come back positive; this was what my oncologist later told me when I raised the question with her. I had a notebook with lots of questions and raised them whenever the opportunity arose, not all could be answered by my BCN so there was an inevitable wait a lot of the time to be able speak to my consultant. I’ve shared the above, hoping that some of it will be helpful to you.
My interpretation of the comment you have outlined above “the Recommendation from MDT is axillary clearance after chemotherapy with a question mark…” is.
They need the CT scan result to be available first. They expect/hope that it will show no spread, based on your BC profile.
a. If the CT scan comes back clear, then they will give you the option to have axillary clearance. And thereafter participate in the Optima trial if you want to.
OR
b. If the CT scan isn’t clear then Chemotherapy would be the most probable next step. In this case the Optima trial wouldn’t be an option as it’s for primary BC.
It always interests me how differently different Trusts do things. I’ve never had a CT or bone scan or MRI or any other kind of test to establish whether there’s any metastasis, despite having a positive node. It does worry me a tad to be honest
It may be that there were other variables?, but I do get how the differences across trusts make it difficult for us to understand how they come up with each of our treatment plans.
One thought is perhaps that the positive node only had micromets (less than 2mm) rather than macromets (greater than 2mm)? I recall that the pathologist I spoke with mentioned something along the lines that it would have been reasonable for me to just have radiotherapy if my affected node didn’t include macromets with some extra nodal deposits.
Re: the point about not having a bone scan, I didn’t have one either, it was just a thorax abdo pelvis ct scan. When I quizzed my surgeon about the type of scan he explained that this scan covered the main organs in the body where BC mets typically first appear.
But if it worries you, it’s definitely worth asking your treatment team for peace of mind. xx
Thank you so so much, you’re very knowledgeable, and helpful! Im finding that I dont know what questions to ask until I see what other ladies are going through on here and learning more from other experiences where I compare to my own journey.
I wish I wasn’t having to have further scans and that my sentinel nodes where clear but trying to find the positive that I can get these scans so can be offered the best treatment. The wait for the bone scan and the ct is awful, the worst part of all of this.
I know the feeling, and can say that I was the same when going through my own journey. I came on this forum, to ask fellow BCN community ladies what I should be asking at my various results appointments because I initially didn’t know what to ask with all the new medical jargon/language I had never heard of before. As I had always been detail oriented in general, I ended up doing my own reading with this too, gathering information from this supportive community, then speaking to various medics, and as a result have unintentially educated myself along the way focusing on what applied to my BC profile.
And many here will say they felt the same about the waiting being the worst. Distraction was my go-to method of handling the waiting periods.
So don’t worry about reaching out whenever you need to.
Sending you a hug of support while you wait. xx
P.s. a notebook to write questions you have will help, so that you have it handy when going for appointments as it’s easy to get overwhelmed when you are given a lot of new information at once.
This is really interesting to follow. I was diagnosed in May (er-, or-, her2+) and the mri showed an enlarged node. The biopsy of the node came back positive for cancer. I had chemo first for 4 months and am due to have surgery this month. They have offered me a lumpectomy with either a full lymph node clearance or given me information on something called the atnec trial, where they just remove afew nodes and if they’re clear they don’t remove any more. Im going for the full clearance. I’m aware of the risk of lymphoedema but it’s a risk I’ll have to live with.
I have started my notebook ready for my appointment on 19th
Just so many different approaches to breast cancer. I trust my consultant and know she has my best interests, I just need to know every single small detail aswell so I can prepare my brain for as many eventualities as possible.
Hopefully will get some answers next week from my BCN rather than waiting for my oncology appt in 19th.
Same, i just want as many things done to prevent any possible spread and recurrance. Waiting for my genetics test results and if possible I would considered oophrectomy if positive! I may have cancer (well hopefully its all been removed:pray:) but cancer doesn’t have me xx
Hi. My diagnosis is almost identical (er+, her2-, 2cm IDC, sentinel node +). They couldn’t have whipped my axillary nodes out faster. Only one more was positive. As a result I had chemo. I never thought to question it.
@d84 I’m sure the bcn will answer your questions. I’ve found that doctors often only give you the basic headlines because they think we won’t understand. Quite often many of us want the full science. I’ve done subject access request after subject access request in order to get full nitty gritty. My 2 positive nodes were macrometastases of 4mm and 5mm both with invasive grade 2. If it is a micrometastasis it is under 2mm. Hope you get the answers you need soon. X
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