ILC grade 2, ++ HER- , diagnosed early Feb. Nearly 4 weeks post surgery.
So went for wound check this morning and my results from surgery were in, so I was given those at the same time! I wasnt expecting this, so didn’t have any preprepared questions. Tricky anyway until you know the results!
My surgeon explained that margins were good and he was happy with that!
The sentinel node removed was positive!- only one removed, so hard to know if any others are/maybe positive.
Given the facts, its now making a decision on node clearance or not.
Tissue is today being sent for an oncotype test to determine further treatment. I have been told likely case scenario radiotherapy and endocrine therapy.
I really need some advice on this and others that have been through this and the decisions you made please
I really appreciate and value everyone’s advice! Thanks so much!
I was in a similar position to you. Two nodes removed in sentinel node biopsy, one was positive. My surgeon didn’t recommend node clearance because he said it can cause other problems and extremely likely that no other nodes would be found to be positive. He did recommend extra radiotherapy which he said would be just as effective so I had 15 days of it. I also had Oncotype which came back with a score of 26 so chemo was recommended which I hadn’t been expecting but it wasn’t too bad.
It’s so difficult to know and I was quite glad that my surgeon pretty much told me what to do!
. It’s great that you have clear margins and can move on to the next stage of treatment. I hope things go well for you.
Yes, I finished the main treatments in August 25 and have been on anastrozole and ribociclib since then. Had first post treatment mammogram in January and all clear.
I understand where you’re coming from if only one lymph node removed and that was positive. It’s a difficult decision and I think different places take a different approach but my surgeon was of the opinion that radiotherapy was as effective as node clearance at tackling any rogue cancer cells. Pre diagnosis ultrasound and pre surgery mri hadn’t suggested any issue with lymph nodes so was surprised when one came back positive but I guess that might mean that it hadn’t had chance to go very far yet?
I also found it helpful to discuss things with bc nurse.
I wish you luck with whatever you decide. You will soon be looking back on all this …
I too had ILC grade 2, ++, HER- in 2022. (A lesser mucinous bc in other breast was the initial diagnosis of a small lump, but my lumpy, tender, cystic history in the other breast prompted further investigation which unearthed the more serious yet ‘invisible’ lobular one.)
During mastectomy, one suspicious node was harvested (further away than the two sentinel nodes which were UNaffected). I was given the option of radiation of the armpit or surgical full axillary clearance. I opted for the latter because I (and everyone’s different) wanted lab clinicians to poke around in the excised tissue to physically find any other affected nodes (there weren’t any), rather than blindly zapping and hoping that would destroy any others. I did go on to have ‘mop-up’ radiation to my left chest wall anyway, and was recommended hormone therapy ( which I endured for 10 months only, I’m afraid ).
Good luck with any follow-up treatment you opt for
The actual surgery wound healing was pretty good (other than the wider bumpier scar). The geometry of that armpit looks no different to the other side, although both have changed since mastectomy, inevitably. The weird numb-yet-sensitive sensation in and around the armpits - also most likely from the mastectomies when nerves are disrupted. (Important to keep up the stretching exercise regime and scar massaging once healed enough.)
However, I did go on to develop lymphoedema about 6 weeks later. (General statistics suggest only 10-20% of people do go on to develop this, and often not until many years later. I was one of the unlucky ones ) I went to a couple of specialist massage therapists for manual lymphatic drainage before attended the NHS clinic. Lovely therapist persevered with several lines of attack and eventually after 6 months or so, and the investment in an expensive pump to use at home, it was under control. My hand and arm remain ever so slightly puffy ( not noticeable to others) but other than that it seems to be keeping calm 3 and a half years on.
This may not be what you wanted to hear, but you should know it’s a possibility.
I can’t regret my decision because I was the one who wanted a physical examination of the removed tissue for peace of mind, at least about that aspect !
I looked back at paperwork and found I did have some of the lymphoedema treatment before radiotherapy, so I didn’t develop it because of radiotherapy).
I believe the radiotherapy (on left chest wall, rather than armpit-directed) was a routine ‘mop up’ in the area of the tumour and surrounds, not a follow-on treatment of the armpit. (It was delayed by quite a few weeks due to backlog of patients post Covid slowdown, so may have been shutting the door after the horse had bolted. Hope not.)
So no, I don’t think it was the lymphoedema that delayed the radiotherapy, but it may have helped that the lymphoedema was not so ‘brand new’ by then.
Hope that covers your question. Happy to answer any further ones you may think of. x
Did you have an oncotype test done? If so, what was you results? Sorry for such direct questions! As I read your responses, more questions come to mind!
Yes, my oncotype came back at 12 (although that was presuming I took hormone therapy for 10 years - obviously stats change if you don’t). However, based on that Californian lab examination of my tumour, it was deemed that what little benefit I might get from chemo would be outweighed by the damage it inflicts on the body in general.
The decisions people make are based on their own personal ‘risk aversions’. My body appears not to like any drugs ( even paracetamol - beyond the first 2 in a day - leads to mild palpitations and feeling spaced out ! … same with plastics, some cleaning products) therefore I am particularly drug-averse. I’ve declined metformin for diabetes 2 (after trying and feeling ill) and statins for cholesterol. This appears reckless to most people but I’d rather take a chance on my body’s various rebellions than drug-induced problems. My fear of hormone therapy drugs was not so much the common side effects (which kicked in most strongly after about 6 months), but the far rarer life-changing, even fatal effects they could have. I was unlucky with lymphoedema, so didn’t fancy chancing anything else. I guess that’s why I headed down the surgical route each time.
(I don’t fancy bungee jumping, parachuting, caving or space travel either )
Most of the hormone treatment is aimed at suppressing practically all oestrogen to hopefully starve growth of further specificallyhormone-receptive breast cancer. What the medics don’t explain/describe is just how many other bodily functions the oestrogen does manage and why its suppression has such wide-ranging, sometimes severe, effects.
Besides, lobular breast cancer is a whole other beast anyway. Research on its specific biology is only just being picking up now, decades behind ductal cancer, and therefore effective targeted treatment of this subtype has yet to come. (My medical team did not even inform me that my cancer was lobular; that’s how little regard it was given !!! ) If you’re interested in following more on the subject :
I spent an afternoon with Susan - an amazing woman with many years of campaigning re toxic oils in the aviation industry (the cause, she believes, of her cancer, as she and her husband were commercial airline pilots) - and most recently, right up to her death, petitioning the government in person, multiple times with successive MPs / cabinet ministers, for major funding for research on lobular breast cancer. Empty promises so far. Wes Streeting is NOT my favourite person.
Also :
I believe all thorough debate is crucial to making decisions. It pi**es me off enormously that this is not an integral part of consultations. I had to pay privately for such conversations. Only one, of three I attended, was really in-depth (about the pros and cons of the various adjuvant treatments, which introduced me to the ‘breath hold method’ for use during breast/chest radiotherapy -
- and which was never mentioned by my NHS oncologist ! ).
As you say, these are incredibly difficult life-long affecting decisions.
I’m sorry if this an overwhelming overshare. Best read in manageable-sized chunks … if you want to.
) I went to a couple of specialist massage therapists for manual lymphatic drainage before attended the NHS clinic. Lovely therapist persevered with several lines of attack and eventually after 6 months or so, and the investment in an expensive pump to use at home, it was under control. My hand and arm remain ever so slightly puffy ( not noticeable to others) but other than that it seems to be keeping calm 3 and a half years on.
)