Hello! Reluctant club member, here. Question about my choices

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Hello lovely ladies.

I’m a newbie who is scheduled for lumpectomy surgery on August 22nd. I am 52 years old, with ER+, PR+, HER2- IDC. They are estimating it’s very early stage, on the right breast only, with a grade 1 lump that is 19 mm. Through the MRI and ultrasound, there is no evidence of any spread to the lymph nodes.

I truly lucked out with detection. I was getting mammograms regularly, and nothing was coming up on the scans. I recently changed doctors, and because I have dense breasts, she requested I get an ultrasound as well. They picked up the tumor, which led to a biopsy.

I feel… mixed? Grateful it’s so early. Relieved it appears not to have spread yet. I’m angry at the timing, and I know I’m in massive denial too, because I am fantasizing this is going to be over by Christmas, when intellectually I realize this is lifelong maintenance and vigilance. Not to mention, surgery might reveal more than expected.

Uninformed or no, these are my current concerns: I am more scared about the possibility of lymphedema and the effects of the hormone therapy than the possibility of cancer recurrence. I’m still perimenopausal, and I’m specifically on estrogen and progesterone because I get debilitating migraines when my levels drop, so I’m really worried about blocking and going off the hormones and how I will be able to keep up with my kids and job. Lymphedema especially scares me because I’m an animator and artist and make my living through my arm.

My question: am I being silly and unreasonable for being worried about lymphedema in my arm, when the probabilities are so low? They have given me two options for surgery:

  1. Lumpectomy, with sentinel lymph node collection, and then maybe I’ll be a candidate for partial, targeted radiation.
  2. Lumpectomy, no sentinel lymph node collection, but then I have to do Whole breast radiation.

The oncologist and surgeon say that the give and take of the probabilities basically even out the odds, so getting lymphedema in either choice will be equal. But I’m still waxing and waning about which option I should do, given I am scared about getting lymphedema more than anything.

I’d appreciate any thoughts. I’m feeling a bit sheepish being so stressy about this, but thank you for your kindness and wisdom!

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Hi @mel_c
Take each step at a time once you have lumpectomy you will have a lot of those questions answered , be aware things do change but once you have definite stage and histology your team can answer a lot of your questions and fears regarding radio and hormone treatment if needed
I know it’s tough all sorts of things go through your mind.
The nurses on the helpline are helpful to chat too. Good luck take care xx

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Hi @mel_c the risk is always there but generally, with a small grade 1 IDC, only the sentinel lymph nodes are taken out. I had three taken out I think, all clear, no lymphoedema. The risk of Lymphoedema tends to increase the more lymph nodes are taken out, say in a total clearance if the test nodes have cancer in them. With sentinel nodes, it is low risk but not no risk, as with everything in cancer treatment. As rads can also cause Lymphoedema, I would imagine the less of it you have the better but it does sound like a 50/50 call.

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Hi there, so sorry that you have this diagnosis and all the decisions to make. I’ve just posted on the lymphodema thread today, you might want to take a look. From my experience I would say be vigilant about lymphodema prevention even if you have surgery that hardly disrupts your lymphatics at all . So for example using anti insect sprays, taking exercise, looking after your skin. I really think I could have avoided my lymphodema if I had done these things. As it was a horsefly bite started it off. I had an axillary clearance so was always at risk, but had 2 good years without lyphodema until the bite.
All best wishes

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Hi, I was 52 when I had my lumpectomy ( May 2024). I had a look at my mammogram at the time - taking an interest - and tbf, the area didnt shine out as an obvious thing. I spotted the lump in between mammograms but given that it was a grade 1 slow growing type, it would not surprise me if it got missed on prior mammograms. Not all types of cancer have calcifications that show up as white speckles - I’d say mine was more like a foggy whispy cirrus cloud. I can understand how they can be missed. It also was a rare type.
I do have some ongoing mild oedema, but, this was nothing to do with the lumpectomy and SLNB (had 1 node removed). The oedema only started a few months after radiotherapy and is confined to the lower breast area ( gravity). I have full range of arm movement ( had to break a couple of cords I developed).
Its not so much the surgery IME, but more the radiotherapy. Unfortunately I had extra unseen DCIS also to remove intra op and quesionable margines in 2 directions - because was to the end of breast tissue and up to skin. So I had 19 fractions including 4 x boosters to the tumour bed. 48 Grays in total, I think this is why the breast oedema and prior cording. Never had any oedema to my arm, no issues there. I’d say, depending on the type of cancer - mine was a rare type, unlikely to involve lymph nodes, it is debatable as to if a SLNB is necessary ( as expected, mine was -ve). I was not given the option though as it was just the path at the time as a standard.
If they get good margines and can do partial targeted radiotherapy ( I know there is a drive to move to this as an option) I think this will count more to prevent oedema than whether you remove 1 lymph node or not. I dont think you need to focus on type of surgery to avoid it, more so the type of radiotherapy.

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Oh also, like you, I was perimenopausal. I nearly did hrt a couple of years before my diagnosis, but realised that it was catching covid that made my meno symptms feel temporarily worse, then felt better a few months after each time ( had it a few times). Glad I didn’t end up starting it.
You will need to stop the hrt unfortunately, and because you are perimenopause and hormone sensitive they will suggest tamoxifen for at least 5 years. Tbh, I lasted 3 months on that and jacked it in because it caused cognitive slow down and depression that would of left me unable to do my job. I also weighed up that the benefits were low on ‘predict’. Its just a case of now they give every person experiencing hormone sensitive cells whether IDC or DCIS anti hormone treatment which can sometimes only improve outcomes by an estimated 1 % ( as its a cheap out of patent drug, regardless of side effects).
The exercise and healthy eating I do has a much larger benefit statistically ( neither of which I would of been capable of doing while on the drug). Its individual, I tried, wasn’t worth it on balance and my oncologist agreed it was reasonable to stop.
So, now I’m 54, and still perimenopausal though this year my periods have become less frequent, so hopefully naturally dropping my hormone levels somewhat. Only mild hot moments during pms times, no brain fo, ok.
There is cardiovascular benefit to a late menopause, but unfortunately a higher risk of breast cancer. In the years running up to diagnosis I think my oestrogen levels went too high, in my case, as periods more frequent and had an entropion on my cervix ( caused by high oestrogen). My mother had breast cancer and had menopause at 58 ( remains fine at 81 after G3, st 2 needing chemo, radio, full node clearance, no oedema).