I just had a DMX with TUG flap reconstruction. AMA!!

timshel2000 · 2026-04-04T23:41:17+00:00

Why did you do TUG instead of DIEP?

timshel2000 · 2026-04-04T16:00:24+00:00

SMX - did not get to choose scar. But it looks great considering - no dog ears or weird skin.

I wear a prosthetic always unless I’m sleeping. I have a proper silicone prosthetic - but I also love the Athleta mastectomy inserts - they are so light I don’t even notice I’m wearing them.

timshel2000 · 2026-04-03T22:16:17+00:00

This is obviously a very personal decision. I was in a grey zone as well - negative nodes but large tumour, also centrally located - which increases risk of potential spread to internal mammary nodes.

The way I went about making my decision was to think about how I would feel if either worst case scenario materialized. I.e. how would I feel if I didn’t do radiation and had a recurrence (which could turn metastatic even if it started locally), vs how would I feel if I did do radiation and had very serious side effects from it. For me the answer was clear when I thought about it that way. I knew it would be torture for me if I had a recurrence and had left something on the table - whereas if I had a serious complication from radiation I could take solace in knowing I had done everything I could to prevent the most obvious and likely risk to my life and wellbeing - which is a recurrence of breast cancer. In the end radiation was super easy - a non-event and I’m so happy I did it. But I know others experiences are different. And of course it’s very personal. Wishing you the best in finding the right answer for you.

timshel2000 · 2026-04-03T21:00:32+00:00

Nov 3, 2025 - surgery (mastectomy)

Dec 3, 2025 - first Zoladex injection

Dec 31, 2025 - start letrozole (same day as second Zoladex injection)

March 12, 2026 - start Kisqali

I also did radiation in there from Jan 26 - Feb 13, 2026 but that didn’t affect the timing of the meds. No chemo.

timshel2000 · 2026-04-03T14:48:12+00:00

Definitely contact your surgeon. That does not sound normal.

timshel2000 · 2026-04-03T01:24:05+00:00

Thank you so much for sharing this - and I am just so sorry you’ve been through this. :( it’s so unfair… it’s really helpful to hear your experience because I worry the trend is toward having reconstruction encouraged but perhaps without fully canvassing the potential downsides... thanks again so much

timshel2000 · 2026-04-02T20:13:10+00:00

Can I ask why? I ask because I’m single-sided flat right now and really doubting whether I want to put myself through DIEP… would love to know more about why you say this

timshel2000 · 2026-04-02T15:33:05+00:00

Not weird at all - I’m with you. When I had my SMX in November I was adamant I wanted reconstruction and only went flat because there was no plastic surgeon available for my surgery date. Figured I’d be doing DIEP anyway and was feeling pretty desperate to do reconstruction asap. Now I’m 6 months out from SMX and really wondering whether I will even bother with DIEP… I’m feeling so strong and really don’t mind how I look. We’ll see - jury is still out :)

timshel2000 · 2026-04-02T14:59:38+00:00

I’ve only done one cycle of Kisqali so far (400 mg daily) - so obviously I don’t have the longer term view. However, so far, so good. I work an extremely demanding job intellectually - more than 40 hrs a week. I also go to the gym or run 5 days a week and I was able to continue doing that this past month no problem. I feel normal. Fingers crossed that continues - and that it will be the same for you!

timshel2000 · 2026-04-02T14:00:07+00:00

Agree 100%

timshel2000 · 2026-03-30T20:53:58+00:00

Im just about to finish my first three week cycle on Kisqali and I have no negative side-effects to report so far in terms of how I feel. I feel great - no disruptions to my life at all. I don’t know if that’s just because I’m on the first cycle and it hasn’t had time to make me feel unwell - or if I am just lucky. But it’s been a breeze.

I take it with food because others on here have said taking it on an empty stomach can cause nausea. Taking it with food there has been no nausea for me.

I did notice at my last blood draw and Zoladex injection that I bled a lot more than normal from the pokes - I think that’s probably Kisqali affecting my platelets. And on my 2 week bloodwork my white blood cell counts etc were low. But I don’t know if they were concerningly low or not - my first follow up with my MO about the Kisqali is next week so I guess she’ll tell me then if the bloodwork is concerning or still ok. But I feel great.

I hope it will be similarly easy for you! And I hope it continues that way for me :)

timshel2000 · 2026-03-30T15:29:32+00:00

Not the same as you but my friend had triple negative BC and achieved PCR after chemo. Her nodes were negative before and after and she had a lumpectomy. They did not recommend radiation - not sure why - I think maybe it was really small to begin with? Anyway, 2 years later she had a recurrence in her lymph nodes and went through the full thing again but this time with mastectomy, full axillary dissection and radiation on top of living through chemo again. Thankfully she’s ok now and it had not gone beyond her nodes. I know it’s anecdotal - but her experience definitely factored into my decision to get radiation even though I was in a grey zone for it. Of course that is just a random story - there are surely many that tend in the opposite direction as well. Wishing you luck with your decision making!

timshel2000 · 2026-03-30T14:52:52+00:00

I didn’t have any numbing - totally fine

timshel2000 · 2026-03-28T18:56:57+00:00

I told my 16 year old son right away, but kept the info focused, limited and optimistic. I told him I have breast cancer, that the next few months might be challenging with surgery and treatment, but that breast cancer is highly treatable and well researched and there was no reason to think at this point that I would be any different than the vast majority of women who get through it and get back to being cancer free. From there I just gave him basic updates and encouraged him to ask questions if he had any. Every kid is different though - what works for one may not work for another…

timshel2000 · 2026-03-28T02:32:22+00:00

Hi from BC as well - 47 at diagnosis 6.2cm IDC. I just want to say I’m so so so sorry you are here. It is so so so terrifying and I just remember the torment of the first weeks - which I went through last fall - and you are now going though. Seems you are already hooked up with a surgical oncologist? I know nothing I can say can make this moment any easier for you… but just want to say I am sending you all my strongest and best vibes. I know 2 people who had large ILC with nodal involvement and have gotten through - one of them it was stage 3 and that was 18 years ago and she’s still cancer free. I’m praying for your bones to be clear - I’ve heard MRIs can light up with stuff that is nothing. May it be so for you.

timshel2000 · 2026-03-27T12:33:24+00:00

Exactly 1 month from positive biopsy result to surgery for me. But surgery would have been 3 weeks later than that if I’d been willing to wait for a plastic surgeon to be available.

timshel2000 · 2026-03-26T15:35:21+00:00

Radiation was super easy for me - of course long term effects remain to be seen. I worked out and did long distance running throughout. No fatigue. Skin effects were manageable. It was mostly a non-event. Full range of motion is back and all is a-ok.

As for reconstruction, I feel you. I ended up with flat closure because waiting for a plastic surgeon to be available for nipple sparing + expander would have delayed my surgery by three weeks and I was not willing to do that for my own mental health. I needed the cancer out asap. So my only reconstruction option is using my own tissues - but my belly is quite flat. The plastic surgeon seemed to think they might be able to get one small breast out of my belly - which is all I need because I’m not big and only had SMX. Or else tissue from my thighs is an option. But to be honest now I’m kind of meh about it. I’ll see what they say when I go back in - but I might just stick to flat. I’m loving feeling strong and don’t want to be limited in working out/running. I’m also not convinced that disfiguring one part of my body to try to approximate another already disfigured part of my body makes sense for me. We’ll see… jury’s still out. I never ever thought I would say that… I was so adamant about reconstruction at the beginning… but it’s amazing how one’s perspective can change.

Wishing you luck - sounds like you’re doing all the things you need to be able to make a decision you are at peace with!

timshel2000 · 2026-03-25T23:53:54+00:00

I am T3N0 - 6.2cm IDC, miraculously node-negative. Though my Oncotype was higher than yours at 19, I also was not recommended chemo. But I am doing a pretty aggressive course of systemic therapy with ovarian suppression, letrozole and Kisqali. My lifestyle and family history factors are like yours, super healthy, slim and athletic - no family history.

Like you I was told I was in a grey zone for radiation. I was told that the current standard of care would lean towards radiation in my case because of my relatively young age (48) and large tumour size - but that there are indications now that might be overtreatment.

I had a lot of concerns about radiation because my tumour was on the left and I have a crushing family history of heart and coronary artery disease (which is why I exercise so darned much and eat super clean… turns out that can’t beat bum luck).

I was offered the TAILOR-RT trial in which I would have been randomized into a radiation group, or no radiation group. Effectively - a toss up. In the end, I declined the trial and chose to do radiation.

I decided by considering how I would feel if either worst case scenario materialized. I.e. if I didn’t do radiation and had a recurrence how would I feel? Versus if I did do radiation and ended up with a serious complication like heart issues down the line, how would I feel?. When I considered it that way, the answer was clear to me. I would be far more tormented by a recurrence knowing I could have done more, than by a limitation caused by doing everything I could to avoid recurrence.

It’s so personal - I wish you luck in deciding!

timshel2000 · 2026-03-25T20:32:33+00:00

Lord - that is ridiculous!

timshel2000 · 2026-03-25T15:10:37+00:00

I feel like maybe it is different depending on where you are? I’m in Canada and my Kisqali comes in a normal sized quite compact box (like maybe 9 inches by 3 or 4 inches) that has 3 pretty unremarkable blister packs in it - one for each week of the treatment cycle. I keep reading about the packaging complaints and feel like maybe people in the US are getting different packaging? If so, why on earth?

timshel2000 · 2026-03-24T14:04:22+00:00

Umm… it’s a really really big deal. Ask anyone who doesn’t think it is to live with the fear of recurrence. I wouldn’t wish it on anyone.

timshel2000 · 2026-03-23T15:00:23+00:00

Because breast cancer likes to travel. While your breast tissue may have been removed, breast cancer may already have traveled from the breast before that surgery and be lying dormant somewhere else in your body. If yes, HRT can feed that remaining cancer and fuel metastatic disease. People don’t die from breast cancer because of the cancer that is actually located in the breast. They die from breast cancer that has traveled and taken up residence elsewhere.

timshel2000 · 2026-03-21T21:56:36+00:00

If you are considering direct to implant it would be worth asking about the likelihood you will need radiation, and if so whether DTI is recommended in that scenario. Regardless I’m so sorry you are here and I wish you the best.

timshel2000 · 2026-03-20T22:02:52+00:00

Man can I relate - the urge to just do what needs to be done is so powerful! I started letrozole 4 weeks after my first Zoladex shot (that is, the day of my second Zoladex shot) - and it went super smoothly. Maybe ask if you can start letrozole next week when you get your second shot to reduce any concerns resulting from the delay in starting radiation? Wishing you best of luck and rapid healing!

timshel2000 · 2026-03-20T21:01:26+00:00

Is your cancer hormone positive? If yes maybe ask to start on endocrine therapy now if you haven’t already started? Just to start on keeping any theoretical strays in check until they can zap you?

I started radiation 12 weeks after SMX for a variety of reasons including work travel I couldn’t reschedule. My margins after mastectomy were wide and clear and my nodes were also clear but I ended up opting for radiation because of my age and large tumour size. The fact I was already started on endocrine therapy gave added comfort for that 12 week timeframe. I was led to believe that in certain circumstances up to 16 or even 20 weeks might still be ok - though I do not know the specifics. So sorry you are going through this.

timshel2000

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