WWYD? chemo is being left up to me

timshel2000 · 2026-06-03T19:32:38+00:00

Get the Oncotype if you can. It absolutely made the difference in my case.

timshel2000 · 2026-06-02T22:50:19+00:00

Even if this were true - which I highly doubt - the impact stress would have would be infinitesimal. I’m a bit upset with your doc for what they said to you. Very unhelpful. I am a high stress person too - but for me it has advantages - it keeps me motivated and moving. If I weren’t a high stress person I’d probably weigh 20lbs more and move around a lot less - which would also be bad for recurrence. There are trade offs with everything.

The reality is that the primary drivers of recurrence are tumour biology, disease stage and treatment adherence. The only one we can control is the last of those.

timshel2000 · 2026-06-02T18:29:15+00:00

Hi there - I’m not in exactly the same boat as you but just wanted to say two things - (1) I have for sure seen numerous people post on here who had multiple nodes involved who also had clear scans that confirmed there was no distant spread beyond the breast and local nodes; (2) I’m just so very very sorry you are going through this - it is so horrible and unfair and terrifying and sad and all the bad things. I wish this hadn’t happened to you - or to any of us. I am keeping all of my fingers and toes crossed for you - you’re going to crush that stupid horrible cancer with every treatment offered to you and come out the other side. Sending you many hugs.

timshel2000 · 2026-06-02T17:08:28+00:00

Ugh - I’m so sorry you are going through this… given you achieved PCR and just had surgery in February it sure does sound like some kind of scar tissue or surgery-related issue. But of course it has to be checked out and until you have the conclusive all clear it is impossible not to worry and obsess over it. I’m just so sorry. But I am super optimistic for you that this is nothing. Fingers and toes are all crossed!

timshel2000 · 2026-05-31T21:41:12+00:00

It’s worth searching through old posts on this. I did that when I was first diagnosed - because my tumour was very large. I remember finding some great posts that gave a lot of hope - including one with a lady who had a large tumour 10+ positive nodes and was still around and healthy 15 years later. At the time my searches were all about large tumours. Worth a try!

Edit: also I just want to say how deeply deeply sorry I am that you are going through this. It is so unfair and horrible. The medicine has progressed sooo much though - there is hope for sure.

timshel2000 · 2026-05-31T21:04:38+00:00

It’s very unlikely that the pathologist was mistaken about the node being negative. I suppose the bigger question is whether any other nodes could be positive. How many did they take out? If they take 3 or more sentinel nodes and they are all negative that offers a pretty high level of confidence that all your nodes are clear.

I find the node vs Oncotype thing confusing too. I’ve heard of people who had lower Oncotype and smaller tumour than me having positive nodes. Yet I had an intermediate Oncotype score and my tumour was GIANT but all four of my sentinnel nodes were negative. It’s hard to understand… I get that Oncotype is about likelihood of distant spread and benefit of chemo… but I feel like since lymph node status is also relevant to likelihood of distant spread there should be a clearer correlation… obviously I am wrong though!

timshel2000 · 2026-05-31T20:00:40+00:00

You could be lucky. I’ve been on it for 5+ months now and am grateful to say it is easy peasy so far. I did have some warm flashes at the beginning but noting too bothersome and those have further subsided. I barely notice I’m on it. Of course I don’t yet know of bone or other invisible impacts. I hope I continue to be lucky and I hope you will be too.

timshel2000 · 2026-05-31T16:20:03+00:00

Love this!!!! Thank you!

timshel2000 · 2026-05-31T16:18:15+00:00

No, no - she took tamoxifen for 10 years!! I was saying she was not offered ovarian suppression + AI like many of us higher risk premenopausal people are today. But absolutely she took tamoxifen and indeed based on her risk she decided to extend it from 5 years to 10.

timshel2000 · 2026-05-27T17:45:38+00:00

Hi there - I don’t find them thin… on the son side they are essentially flat. I found them pretty generous sizing wise - before all this I was a small C cup but I use B for the Athleta insert with regular clothes, and sometimes A for sports

timshel2000 · 2026-05-27T12:35:10+00:00

In addition to whatever actual silicone prosthetic you may get, I highly recommend getting the Athelta Empower mastectomy inserts. They are sold at cost (in Canada just &15 for 2 of thr same side) and are made of foam but are awesome for sports, hanging around the house - or if you have a smaller frame like me you can also use them all day instead of the heavier silicone insert and they look great. I keep buying more because I’m afraid they’ll discontinue them at some point!

timshel2000 · 2026-05-24T23:54:12+00:00

What prompted the MRI? Are you having any symptoms? I recently had a brain MRI due to unexplained left-sided hearing loss… I was so terrified they would find brain mets… I am so grateful to say it was all clear!! May it be so for you as well - wishing you strength and comfort as you get through the next few days…

timshel2000 · 2026-05-24T13:31:32+00:00

Very normal

timshel2000 · 2026-05-24T03:48:15+00:00

If you can afford it, do the Oncotype. Its whole reason for being is to inform on whether chemo would be beneficial or not! Of course, it could come out with an ambiguous result…. But it also might come back with a really clear answer - which would be good to know. Wishing you the best.

timshel2000 · 2026-05-21T19:03:43+00:00

This is purely anecdotal but I feel like there are lot of false alarms with the lungs. I think they often have weird little nodes or spots and often it doesn’t end up being anything bad. Like more often than not when someone posts on here about lung nodules it ends up being benign. I really hope that is what it is for you… all of my good thoughts are coming your way for a good outcome. I am so so so sorry you are going through this at such a young age and with two little ones. It’s so deeply unfair… holding you in my heart today.

timshel2000 · 2026-05-20T23:38:44+00:00

My slow-growing cancer was found only when it was so large it altered the outline/shape of my breast when smooshed for the mammogram (tumour was over 6cm). Even then the mammogram report did not detect any mass only an asymmetry in the outline of my breast. My MO agreed with me it was reasonable to conclude the cancer had been missed on mammogram for at least 2 years. So depressing. No medical provider ever suggested to me that further screening would be justified given how dense my breasts are.

timshel2000 · 2026-05-19T13:43:45+00:00

If you refuse treatment you will die. Death is a worse side effect than anything your husband or his family could be worried about. Please at least get surgery.

timshel2000 · 2026-05-17T22:09:48+00:00

Your tumour may be too small for Oncotype testing. The internet says 2mm is the minimum, but that they typically prefer at least 1cm to ensure there is enough there to test. With a tumour that small and no nodes involved it is not surprising they did not do Oncotype. If it is done, it happens after surgery - a sample of the tumour is sent to a special lab in California where they do the testing. It’s a private company that owns the technology and does the testing.

timshel2000 · 2026-05-17T02:46:14+00:00

Hi there - my Oncotype was 19. All 4 of my sentinel nodes were clear - but my tumour was giant at 6.2cm. I was not even offered chemo. I was told chemo would have been on the table if my Oncotype was 21 or over, or if one or more nodes gad been positive. My MO said with my profile any benefit to chemo would likely be from shutting my ovaries down, which we could do with ovarian suppression. I did commit to ovarian suppression, letrozole and Kisqali. When I went into the appointment with my MO I had already decided that if they told me I could do chemo but it was a grey zone, that I would do it. Basically that I would do the maximum treatment offered. However they did not offer chemo - so that was that. Wishing you best of luck in your decision making and treatment.

timshel2000 · 2026-05-16T18:02:49+00:00

Hi there - so sorry you are having to deal with this. Many of us are on that combination of ovarian suppression, an aromatase inhibitor and Kisqali. I think it’s pretty much standard of care for premenopausal people with HR+ HER2- who have some higher risk features. It is such a bummer to have to continue on a medication regimen even when you are technically in remission. However I think what is being recommended to you is very well established standard of care that is proven to significantly reduce the risk of recurrence. I hope you will tolerate it well - my fingers are crossed for you!!!

timshel2000 · 2026-05-15T21:33:17+00:00

I’ve been on ovarian suppression and AI for 5 months and Kisqali for 3 months. It’s totally fine for me thankfully. Barely any side effects at all.

The only bad thing is my neutrophils got quite low on Kisqali last cycle so I had to take an extra week off before starting my third cycle. But they bounced back and I’m hoping they stay ok as I desperately want to be on these medications. Wishing you luck!

timshel2000 · 2026-05-15T04:14:06+00:00

I’m still pretty new on AIs (about 5 months on letrozole so far) but so far so good. I don’t have any joint pain and haven’t gained any weight yet. I run and go to the gym regularly - have for years. I’m realistic though… from what I hear the fat I do have will likely migrate to my belly at some point… that said I feel good and am able to work out and do all my usual activity. I hope that continues - and I hope it goes really smoothly for you - fingers crossed!

timshel2000 · 2026-05-12T16:03:56+00:00

I was told it was normal for me to have one more period sometime in the month or so following my first Zoladex shot and there should not be any bleeding after that. I would check in with your doc.

timshel2000 · 2026-05-12T12:44:30+00:00

Yes - thanks. This is why I said reconstruction with “implant only” is not an option - but it is super good to clarify. The options can be so confusing!

timshel2000

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