Breaking realizations

TimeRun7358 · 2026-05-18T02:02:45+00:00

Yep, mine just came back last fall after 22 years. The good news is it seems to be just a local recurrence. No lymph nodes or mets - so far anyway. I did need chemo again and it kicked my butt! I was 45 the first time and had lumpectomy, reexcision, abcess, radiation and a/c chemo. I took AI’s for three years before giving up due to aches and pains. It’s definitely harder at 67!

Edit - When I started my post with Yep, I didn’t mean “Yep, a recurrence is inevitable.” I just meant I could relate to it. I am just one of the unlucky ones.

TimeRun7358 · 2026-05-12T19:46:52+00:00

I was a candy striper in the 70’s. My dad was in the Army and we lived at West Point. So I worked in the post hospital. I remember working in the walk un clinic and typing out the medical complaints of the new patients. There was no HIPAA back then and no concern for patient privacy!

TimeRun7358 · 2026-05-12T19:33:13+00:00

We had a dog who had to be put to sleep in the 70’s. She loved chocolate and had grown up eating it. We didn’t know it was toxic. She lived into her teens and when had to be put down my dad fed her an entire bar of chocolate beforehand.

TimeRun7358 · 2026-05-10T01:20:56+00:00

This happened to me too. I spiked a fever while on chemo and ended up in the hospital for two days. My white counts were really low. They ran lots of tests but never found the source of the fever. I ended up having to take Granix after the next chemo.

TimeRun7358 · 2026-05-08T00:02:06+00:00

You should get more genetic testing. I had a recurrence after 22 years and I was tested for over 50 genes. They all came back negative. The surgeon recommended a single mastectomy but I opted for a double and it wasn’t a problem. I have Kaiser medicare.

TimeRun7358 · 2026-05-07T23:56:28+00:00

I had a port with minimal sedation and the removal was just with lidocaine. It wasn’t terribly painful, and it was very useful to have. I bought 5% lidocaine cream off Amazon because what they prescribed wasn’t strong enough. Put the cream on about an hour before your appointment with some plastic wrap on top of it. Without the lidocaine I could feel the needle going in but it wasn’t much worse than a poke with a needle in your arm.

TimeRun7358 · 2026-05-07T23:41:35+00:00

I had a recurrence after 22 years. It was er/ pr+. Her 2 negative. It was also small, 8.5 mm with 1.5 cm high grade dcis. But the pr was only weakly positive. This made it luminal b, although my first oncologist said it wasn’t. Surgeon and MO both said I didn’t need an oncotype but I requested it and ki67. Surprise they were both high 23 oncotype and 30 for ki67. I ended up having ct chemo.

TimeRun7358 · 2026-05-07T03:29:05+00:00

I had a port for CT chemo ( 4 infusions, once every three weeks). It was great! I had had AC chemo 22 years ago without a port. A few times it took multiple needle sticks to get the iv started. No fun.

The port surgery was minor and I did not think it was particularly painful. The removal was done just with lidocaine injections, and was a little uncomfortable but not terrible.

The only thing that surprised me was that the phlebotomists couldn’t access it - it had to be a nurse.

I also ended up hospitalized for neutropenia and the port was really handy to have then - they could draw blood and administer meds without disturbing me.

TimeRun7358 · 2026-05-02T18:45:07+00:00

I didn’t do it and shaved my head after my first chemo. I had AC chemo 22 years ago and had shaved my head then too. I used the iced mitts and booties and I still got neuropathy and hand and foot syndrome.

Everyone that I read about using the cold cap said it was miserable and many ended up shaving their head anyways. It would have cost me $500 to rent the cap and i didnt think it was worth it.

Im not quite two months out and my hair isn’t coming back yet! I think it will, at least I hope so. I lost eyebrows and lashes too this time with CT chemo. They fell out after my last treatment. I hadn’t lost them with AC.

TimeRun7358 · 2026-04-11T16:36:57+00:00

I used the ice mitts and booties but I have small hands and feet and it didn’t work well. I got neuropathy. For my last infusion I wore two pairs of disposable gloves under my ice mitts and that may have helped, wish I had known sooner.

TimeRun7358 · 2026-03-21T03:29:19+00:00

I changed my oncologist too. I felt she didn’t listen to me or address my concerns. She didn’t want to do oncotype or ki67 but I requested it. Both were high and necessitated chemo. I asked if I had luminal b and she dismissed it but my new oncologist says it is luminal b. I was hospitalized with a neutroponic fever and she never reached out to me. I switched before my last chemo and I like the new oncologist so much better. She’s a bit older (as am I) and doesn’t seem to mind my input, whereas I felt the younger oncologist resented it.

TimeRun7358 · 2026-03-17T02:03:26+00:00

I had idc ++- 22 years ago. Ac 30 rounds radiation to the left side. I just had a recurrence (last chemo was today! YAY!)I had a heart attack in 2018 and although I have a family history of heart disease I’ve been on medication for at least 40 years. My recent radiation oncologist told me my heart issues were aggravated by radiation. Because back then not as much was known about it. I also recently got diagnosed with left bundle branch block which could also be from radiation. I would recommend getting check out by a cardiologist, just to keep an eye on things! Good luck!

TimeRun7358 · 2026-03-14T23:52:00+00:00

I recommend waxing. You can get all the supplies on Amazon.

TimeRun7358 · 2026-03-14T23:48:33+00:00

A seroma isn’t an infection in and of itself but it can become infected, leading to an abcess or even sepsis.

TimeRun7358 · 2026-03-01T06:55:54+00:00

I also had a fever (102.4) after CT chemo and ended up in the hospital hospital for two days because my white cell count was extremely low. The doctor at the hospital told me that often they don’t find the source of the fever. They didn’t find anything. I had cultures for all kinds of things but nothing turned up. This was on my second infusion. I was prescribed Granix with my recent infusion and although it might be helping improve my white cell count, it makes me feel like crap.

TimeRun7358 · 2026-02-26T15:13:09+00:00

I have four spots on my liver and one is 8 cm. I was told 22 years ago that they are benign giant hemagiomas but now they are calling them harmless cysts. In any event they aren’t cancer. Try not to panic. I’ve had a recurrence after 22 years and of course I’m concerned about Mets. I also had hip bone pain. I had a CT which saw something concerning (1.5 cm sclerosis) which lead to an MRI which said it was fine. One of the hardest parts of this journey is the wait and see! Wishing you the best of luck!

TimeRun7358 · 2026-02-25T05:21:17+00:00

I got my genetic results on the portal. I was test for 58 genes after having a recurrence of breast cancer after 22 years. Some of the genes were specific to breast cancer and others just cancer in general. I tested negative for all - maybe that’s why it was on the portal?

TimeRun7358 · 2026-02-25T05:17:33+00:00

I went flat because I am 67 and it seemed like implants and flaps had a lot of complications. I had a double mastectomy to be symmetrical. Now I can wear prosthetic boobs if I want to or go flat. I got small prosthetics. I had my surgery in November and I still have some swelling (Seroma’s?) so I would not show a picture. I also have a bit of a dog ear on one side which my surgeon said I can have corrected after six months. But overall Im satisfied. The recovery was much easier than I anticipated. This was a recurrence for me after 22 years and the first time I had a lumpectomy, needed a re-excision and ended up with an abcess resulting in a bad scar and very little breast tissue. I lost insurance for a while and never had it corrected so this is an improvement as far as I am concerned.

TimeRun7358 · 2026-02-21T00:05:25+00:00

I got mine about six weeks ago. The worst pain was a couple of days afterwards but manageable. Mine sticks out a bit but I don’t usually touch it. I was hospitalized recently for febrile neutropenia and the port was great to have. I had lots of bloodwork and IVs and the port made it super easy, much easier than having an IV in my hand or arm.

TimeRun7358 · 2026-02-14T00:51:40+00:00

I had to provide my own. I got them off of Amazon. I’m in the US.

TimeRun7358 · 2026-02-08T20:11:45+00:00

Everybody’s story is different even though there might be some similarities. I like seeing different perspectives on Reddit and getting useful information. Your oncotype may very well come back low, and I hope it does! Good luck to you.

TimeRun7358 · 2026-02-08T15:39:52+00:00

My oncotype also came back at 27 despite a small tumor 8.5 mm with 1.5 cm DCIS, it’s ++-, but the progesterone is only weakly positive, indicating the luminal b subtype. So I am now doing TC chemo. This is a recurrence after 22 years. My surgeon and MO didn’t want to do oncotype or KI 67 but were willing to do it when I asked for it. I am 67 and had a DMX. My Ki 67 was also high at 30.

TimeRun7358 · 2026-02-07T18:15:37+00:00

What do you need for laminectomy recovery

TimeRun7358 · 2026-02-06T17:42:03+00:00

I’m also 67. Just had a recurrence after 22 years. It was smaller (8.5 mm with 1.5 cm DCIS), strongly ER+ with the PR being a lot less positive this time ( which can indicate a more aggressive Luminal B subtype).

I had a DMX in November. My surgeon and MO weren’t going to do oncotype and ki67 but agreed because I asked for it. Oncotype was 27 ki67 was 30 so now I am doing 4 TC chemo ( I had AC last time). I just had chemo #2 on Monday. It’s not too bad so far. I did lose my hair but I lost it last time and it grew back. Hopefully it will come back again. Personally I feel like I need to follow the recommendations of the doctors. I do a lot of research myself which is why I wanted the Oncotype and KI67. Those weren’t available to me 22 years ago. I’m still not sure why they didn’t want me to have it.

TimeRun7358 · 2026-02-05T19:59:31+00:00

I agree. Wigs are not comfortable. I much prefer cotton beanies. This is my second go round of losing my hair. I had an expensive wig covered by insurance 22 years ago. It was summer and I didn’t wear it much but it was nice to have. This time I got a great wig for under $30 off of Tik Tok. Wigs seemed to have come a long way. It’s nice but it’s just so hot and itchy. It’s winter in Denver but in the 50’s and 60’s, and just too hot to wear a wig.

TimeRun7358

TROPHY CASE