I had a disappointing post op appt last week. Margins are “close” with DCIS so need to go back for more surgery and after being node negative after the breast MRI, mammo and various ultrasounds one of my nodes came back positive after surgery.
At clinic yesterday, I was given the choice btw an ALND (since I need surgery anyway) or have radiotherapy on the area as my PET scan has come back in good check.
My surgeon did not have a preference and said it was up to me. I have week to confirm so they can ensure they book the right amount of surgery time.
I have always advocated patient input but now that it is ME and I am confused and most importantly scared to make a choice I will regret.
I am very active, 49 and having to worry about injuring my arm, lymphedema etc is not what I want.
I have a friend who is a BC oncologist and she said it is becoming more progressive to to do radio vs surgery.
If you were in this position before how did you choose? Any interesting papers to read? Did you wish you had a choice?
Would love to hear.
Thanks
(PS first time posting - diagnosed late Feb and still in shock)
Hiya,
That’s really interesting. I’m finding that everyone’s ‘journey’ (yep, have begun to HATE that word) is different, whether it’s getting results, treatment or options etc…
I had DCIS and 2 very small grade 1 tumours which meant a masectomy. I didn’t really question this if I’m honest as in shock, have small breasts, didn’t care!! Then a lymph node was positive and I was told that it was full node removal as standard. Both were done in the same op. At no point did they talk about radiotherapy for the lymph nodes, it was a case of ‘get them all out to see if it has spread further’ !!! Again, I didn’t question this …
Since the op, my results have come back that 2 nodes were positive and chemo is recommended as technically I’m ‘cured’ but because of the nodes, they can’t be sure it hasn’t sneakily spread out! Much as I am hating the thought of chemo (June starter - I’ll be in that group, gulp) … I know that I want to kick this 100%!!!
I’m not sure if I’m helping you but I would question how they can be assured that all the nodes are clear? Why do they recommend node removal if you can potentially blizt them with radio?
Sorry… I’m not helping but you need to be 100% comfortable with your choices so make sure you ask lots of questions.
I too am 51, very active, play netball etc… all gone to sh*te for now ! x
I’ve been in your position last July and it caused me a lot of stress to have to make the decision. It seems like for many years the oncologists had a very aggressive approach and the standard of care was to remove all lymph nodes if one sentinel was positive. Now they consider the quality of life of patients and because about 20% of women will develop a lymphodema they are investigating whether radio is sufficient to kill any remaining cancer cells after chemo. I think (but please double check) that they have 5y data and it shows same efficacy. I don’t think they have long term efficacy data yet.
In my case, I opted for full LN removal bc I was told at the beginning that my cancer was “friendly”, grade 1 not aggressive and unlikely to have spread and then they did a LN biopsy (bc they saw with the MRI and echo that 1 LN was a bit enlarged) and found cancer cells so I freaked out and wanted everything removed. I don’t regret my choice bc at the end the pathology report showed that several LN were positive and the cancer was more advanced than they thought… but I do worry now about lymphodoema and I will have to be careful all my life and that’s a big concern. Please don’t be influenced by my decision, all cases are different. This is just my experience. I wish you best of luck, I know how much the decision is difficult.
HI @idcand49,
What a choice you are having to make. I’m currently waiting for results from my lumpectomy and SLNB and I’m trying to put myself in your shoes and I keep going back and forward. The full clearance would at least get rid of all the nodes however like you say it has complications and there might be nothing in them. But you won’t know that until you do it which is the frustrating part.
Can you go back to the surgeon now you’ve had time to think and ask him more questions, like do both treatments have the same/similar outcomes for your type of cancer. What are the pros and cons of one vs the other.
Sorry you have this difficult decision to make. Xx
Hi there
This is a very tricky decision and it’s good you’re reaching out. I realised that no decision can be 100 per cent right.
I was in a position where post mastectomy and snb, one of my nodes was unexpectedly positive. They suggested doing a clearance but after seeking a second opinion, they suggested moving straight to chemo, which was what I did. I then had radiotherapy after chemo. For me, my scarf was healing nicely and psychologically I felt happier with that option. It’s not easy though. I think if you could have a chat with a clinical oncologist you would feel happier. Hope that helps
xxx
I’m being given a choice due to what was found and both radio or full clearance will suffice.
A friend who happens to be a BC onco herself has said it is a very grey area and it is progressive NOT to always do a full clearance as they learn more out the advantage and disadvantages.
@idcand49 what are your thoughts now? I am really interested in your dilemma as technically it would have been my dilemma with a different team! I’m glad a decision was made for me really but I also know when the onc asked me loads of questions about my lifestyle and attitude to risk etc … (discussed the oncscore too) I HAD to do everything possible even though I desperately wanted to walk out that evening and get back to life again.
I had mastectomy, full LN removal (19 were taken), 5months chemo (EC and taxol) and then 15 radio sessions (breast and armpit) so hopefully after this drastic treatment it’s all gone
One can only hope!
@marie911 its gone … yay … I hope you’re entering a new fantastic phase !
@idcand49 you’ll get to a decision that works for you. You just need to be 100% on what you decide but it’s your body, your life so Im sure you will do what’s right for you. Now I’ve got a plan I’ve had a few friends ask why I’m bothering with chemo if it was low grade and only 2 nodes positive but that just reconfirms how important it is for me to do all I can NOW! It’s classic ‘short term pain, long term gain’! I will keep hold of that thought when I’m an egg and
No! I’m confused about my 4 x EC and 4 x paxel (?) every 2 weeks as it sounds more intense than anyone else’s!!! I’m in Sussex and the onc said this is standard. He did say there is an option to stop after the EC but the next x 4 gives another layer of protection. I guess it all depends how I cope - he said I was young and fit and this regime will give me the maximum ‘insurance’ and get me through it asap - in theory!!!
Last year I had lumpectomy and SNLB (only 1 node showed micrometastases) so had oncotype done, score was high so i had chemo and radiotherapy with boost. I now have lymphedema which can be caused also by the radiotherapy which i was not aware of, i think everyone reacts differently to treatments.
@idcand49, just adding to this topic in case it’s of help, as I went through something somewhat similar when deciding whether to go down having a second surgery for ALND, or be referred directly to oncology. My first surgery included a MX and SLNB, where one of the 4 nodes removed came back positive with macrometastasis (>2mm), along with some of the fatty tissue around the node (extracapsular spread) also positive according to the pathology report. Prior to surgery the Axilla Ultrasound was clear.
I weighted the pro’s and con’s of each option (ALND vs Radiotherapy to Axilla) and decided to go with ALND. My decision could have easily gone the other way, and I think what swayed it for me was that fatty tissue around the node removed as part of the SLNB. I didn’t want to risk there being additional positive nodes just being zapped with Radio & not removed (I wanted to know for sure, how far it had spread or not spread even though my CT came back clear, to enable my oncology treatment to be more customised for me).
In the end a total of something like 25 lymph nodes were removed, out of which only that first node was positive, no further positive traces were found when the ALND was done.
I am now 1 year on from ALND, so far so good in terms of no traces of lymphedema. The arm still tightens & loosens with movement, so continuing with those stretching exercises. But I think that would anyway be a lifestyle change to incorporate into our daily routines irrespective of what option you choose as scar tissue remains from surgery.
I did want to clarify though that when it comes to lymphedema both options ALND and Radiotherapy to axilla come with that risk. It’s just that the risk is marginally lower with Radiotherapy than with ALND. So ultimately it boils down to what you are more comfortable with. I was diagnosed at 48, and had that second ALND surgery as I turned 49.
Good luck with making the decision that’s right for you, and the treatment journey that lies ahead.
The overwhelming concern I feel for everyone, as I read through replies, is the expectation of us as patients being able to make these choices. I’m a nurse in a different specialty and I struggle even being medically orientated and I really feel for those who have no clue how to navigate these distressing ‘choices’.
Last week my oncologist said he wanted me to go back to theatre as I have a positive skin(anterior) wall margin. Invasive lobular cancer detected on histology and I should have full mastectomy. My surgeon hadn’t really discussed this with me other than to say RT would mop it up… so I rang and asked for help. This is my life and choices need to be informed.
My surgeon was great - she got all parties together and we sat down on Tuesday to decide what options and level of confidence various approaches would achieve.
Even if the decision turns out in a few years to be wrong and I get local reoccurrence … I know that the information we shared and decision made that day was the best I could have made with what I knew. It’s so important to take each step from an informed position.
I can’t advise you, but seek those who know current research and is prepared to share the collective mind of people who are moving treatments forward.
Good luck.
Thank you Helen3
I’m “lucky” as happen to know a BC onco (diff hosp but think she knows mine!)
She referred me to x 2 papers (trials on this way of treating node +) so having a read
Also recapping my notes, I’m being given a choice as they need to go “back in” to go from a close margin to a clear one near an area of my breast
I was hoping to hear if anyone else has also been ok’d to decide themselves too
I did call the helpline here & although medical advice wasn’t given, a lovely nurse did say I would not be given the decision making if it wasn’t safe to do so.
