ER+ IDC premenopausal pre-adjuvant treatments - positive stories please!

[niky1]

Hi queens!

ER+ PR+ HER2- stage 2, grade 3 unilateral IDC.

I’m 36, abundantly and insanely informed and proactive since finding the damn lump, and I’m post-surgery (lumpectomy with LICAP flap). This was 10th August.

Nodes clear, margins clear. Good stuff.

But on the 28th September I finally got my Oncotype DX score and it was 33. This puts me in the ‘higher risk, chemo probably helpful’ category.

Now I’m waiting to meet with a fertility clinic next Thursday 8th October about egg-freezing but it could be like 5 weeks (!) from start to finish (I thought it was going to be 2/3 max).

That puts me way behind our England NICE recommended timeline guidelines and you better believe I’ve already emailed all relevant teams (surgical, oncology and fertility) in one email to get them to sort their sh out.

Anyway! I’d LOVE some positive stories from any women at all who:

-Started proposed treatment a bit later - was this still OK to do?

-Who did chemo - my regimen will be four months: Epirubicin & Cyclophosphamide for four cycles & Paclitaxel for four cycles: how did you cope? Was your overall health being protected and have you recovered fully now? Was it more manageable than you expected and did you come out without any long-term damage? Did your ovarian function return? (I.e. did you avoid true menopause?)

-Who did Radiotherapy - were you relatively unscathed? Did it impact your health?

-Who are on Aromatase Inhibitors (not Tamoxifen) & Ovarian Suppression with/without CDK 4/6 inhibitors?

-Who have done all of these therapies (maybe not the CDK 4/6 as that’s newer) years ago and have come off them and are feeling good, and not had a recurrence?

-Lastly, any women of a similar age who have subsequently had a successful pregnancy and bubby (be it naturally or with frozen eggs/embryos, whilst pausing medication or AFTER it).

Tell me some good stuff, ladies. I am utterly exhausted by all this knowledge and fear. I felt so hopeful and empowered leading up to and post-surgery and now I’m at this junction and I need, NEED some women, any women, to just tell me that it’s not all bad and that they still are HAPPY, enjoying sex, feeling attractive, feeling healthy, feel their brains actually working well, are not in pain, have good immune function…ANYTHING. If you can shed positive light on literally any of the abovementioned, please do.

Sending light and love to you all!

[demimiray]

We love an Informed Queen here Hello!

ER+ PR+ HER- Stage 3, Grade 2 IDC left side. SMX done. EC-P chemo dose-dense done. 15 chest wall radiotherapy done. Tamoxifen w/ ovarian suppression 3 months in, moving to Letrozole and Olaparib (BRCA targeted treatment) soon.

• Chemo was far more manageable than I expected - even dose-dense (2 weekly EC instead of 3 weekly). Nausea was easily handled by medication. White blood cells were kept up through a Pegfilgrastim injection the day after chemo.
• Lost a lot of cardio fitness because of chemo, but kept walking the dog every day even the day-of chemo (helps to circulate it??). Not really ‘recovered’ that 4 months on, but I don’t feel nearly as tired as I did.
• Fatigue was bad, but I could still make meals and potter around the house. First week of each EC cycle was the worst, then the 2nd week I would actually WFH because I felt generally ok. Paclitaxel was actually more tiring, but had few other side effects except for losing my brows
• My HR was high on EC, don’t actually know whether it was the Pegfilgrastim injections or EC causing it, but it was worse each cycle. Team took it seriously, saw an onco-cardiologist who monitored me to make sure that I had a heart to use once all this was over. After EC that issue just disappeared, they don’t have a formal explanation but I felt confident that I was being looked after.
• I had a hotline number to call 24hrs a day if I got fever or any symptoms whatsoever, rung a few times and was given advice and once told to come in overnight. I had a fever, just a cold which was a bit worse than usual but they can’t risk neutropenic sepsis so I was hospitalised for the one night so they could monitor.
• Radiotherapy was very easy - driving there every day was a bit of a faff and it took a long time to get the position right the first time, but after that each session was about 15 minutes and you don’t feel a thing. I put cream on in the toilets before leaving the hospital and multiple times per-day, got a sunburn-like rectangle which is like the mildest skin reaction you can get.
• My range of motion on my radiation side decreased quite quickly, so I had to keep doing physio exercises and stretches, 2 months on it’s a lot better but still a little twinge in my armpit when I stretch up.

I can’t say much about ovaries as I went into menopause during chemo, had Zoladex to keep me there and now they’ve been removed because BRCA2. I’ve had an alright time on Tamoxifen, moving onto Letrozole I’m expecting worse - but I seem to expect the worst and it’s never quite so bad My brain is a bit crap, but I’m feeling healthier and starting to do more stuff now. I promise it’s not all darkness, there’s a lot which will actually be okay.

[niky1]

Thanks beautiful human, appreciate the response and I’m so pleased it wasn’t as shite as you thought it would be!

You’re amazing for getting as far as you have .

Did any of the stuff make you gain weight? As superficial as this concern may seem to some, I’m in the best shape of my 30s and pre-angry about it

[demimiray]

It’s not superficial, you’re right to be angry! I had just completed couch to 5k and got into a good routine actually running for the first time in my life. I’m sort of back to square one on that now because I didn’t keep it up.

My weight has been very stable throughout though - I ate whatever I wanted during chemo and didn’t have too many bad digestive issues, so my weight was a steady 60kg almost the entire time. I have started putting a couple of kilos on since chemo finished and I’m taking hormonal therapies - Tamoxifen and soon Letrozole. That menopause does feel like it’s putting some belly fat on me, but it’s not dramatic.

I’ve got in the back of my mind that once I’m stable on all my various meds, if I do struggle with weight then I will use a GLP-1. My entire family have had good success with them, and I’ve actually read quite a few people have found it helped with hormonal treatment side effects. It’s sort of a backup plan though.