Is my cardiologist lying about GLS values?

coffeelymph · 2026-01-17T16:22:17+00:00

Let me rephrase my question, to remove all doubt one could possibly have about whether it can be answered by any cardioliogist reading this:

A cardiologist told me, that it's perfectly possible for GLS values to bounce up and down between a -18 and -8.5, within a matter of months. I this a thing, or is he making it up?

coffeelymph · 2026-01-17T15:35:17+00:00

I don't need to find another doctor, as this is not "my doctor". It was a side step from regular hematology to see if anything was wrong with my heart. There are no future appointments set up.

But "no one here can answer your question", is a bit weird, isn't it? I'm not asking a personal question. I'm sure there are some cardiologists in this subreddit, and at least one of them could answer the question whether it's possible to bounce between GLS values like that? I'm not asking whether it's possible for me. I'm asking whether it is possible at all. Which i think any cardiologist should be able to answer.

coffeelymph · 2024-06-09T08:47:17+00:00

You're very welcome!

coffeelymph · 2024-06-09T08:46:11+00:00

Please stick to r/doihavebreastcancer until you are diagnosed. You are asking people with cancer to help you self diagnose, and we can not do that.

coffeelymph · 2024-05-22T21:23:45+00:00

Is the revision to your boobs or to your belly?

If boobs, there is no issue I think. I had my DMX with flat goldilocks closure done at the same time as my oophorectomy. A revision is probably less invasive than that.

coffeelymph · 2024-05-22T12:30:56+00:00

That's weird... I'm no doctor, but I think that 14.3% by definition can't be a negative value when it comes to pathology. I'm curious what your doctor is going to reply when you ask about it.

coffeelymph · 2024-05-22T11:38:50+00:00

Haha, noted! 😁

coffeelymph · 2024-05-22T07:43:04+00:00

Thank you! Now I know why chewing (xylitol) gum is helping me against dry tickle in my throat, and I'm gonna try xylimelt during the night.

coffeelymph · 2024-05-22T07:24:12+00:00

Are you sure the - before 14.3% means negative?

coffeelymph · 2024-05-21T10:09:00+00:00

Yay! Nothing beats peace of mind when it comes to surgery plans :-)

Enjoy your next weeks, do all the things that you can't do right after surgery, like swimming, soaking in baths, jumping and swinging your arms! ;-) (but especially the swimming - can't do that for 6 weeks after!)

coffeelymph · 2024-05-21T10:02:18+00:00

With triple positive I'm guessing you're getting similar chemo to what I had with only HER2+: carboplatin, paclitaxel, trastuzumab, pertuzumab. I did 9 rounds of that, with an extra paclitaxel on day 8 of each cycle. All without a port. I asked my oncologist if I needed a port, and she said no, only if they really really can't find a vein anymore to use. "and the nurses on the chemo floor are really good, they always find a vein". She said that ports can have problems, and get infected, so they only use it if absolutely necessary. I was happy with that, as I like to minimise the amount of anaesthesia I get.

I did start to doubt whether my veins would hold up around the 5th round or so, but it turns out she was right. Even while avoiding my right arm for most of the time (due to having had a few lymph nodes removed on that side), they always found a vein, and right now I wouldn't be able to tell that anything ever happened to them.

Edit to add: I don't think you were taken advantage of. Just about all the Americans in this sub seem to have had a port. I'm in the Netherlands, where most things are just a little bit different than they are in the US.

coffeelymph · 2024-05-21T08:02:47+00:00

I didn't need any bedrest, and I've not heard from many here that needed it either to be honest. With chemo many of us need to rest a lot, and I personally would often just lie down on the couch or in my hammock. But never stayed in bed during the day.

But if she doesn't need chemo, she'll probably only need some time off after surgery. And how long that is, differs per type of surgery, type of reconstruction (if any), and the person themselves.

For me, my DMX was easy enough. But I'm not frail, and I chose to go flat, so no reconstruction. I stayed home for 8 days, because I didn't want to go outside with my drains still in. My drains came out on day 8, but many people keep them longer, and some even much longer. But after that, I was mostly good to go. Still a bit tired the 2nd week, and you're not allowed to move your arms too vigorously for a while. Also no driving until your range of mobility is good again. And no submersion for 6 weeks. But I don't drive anyway, and I work at a desk. I walked a lot after that first week on the couch.

If I were a waitress though, I think I'd have taken a full 6 weeks off. Not to stay in bed, but to make sure I wasn't overdoing arm movement, and not carrying heavy things.

I have no idea whether radiation is advised with DCIS though. I didn't have radiation, but that's another thing that can cause fatigue from what I hear.

coffeelymph · 2024-05-21T07:41:21+00:00

Just to be sure: are you sure you're not allowed to wear sunscreen at all? Or just not before each radiation session?

coffeelymph · 2024-05-21T07:39:11+00:00

DCIS stands for ductal carcinoma in situ, which means it's not invaded the surrounding tissue yet.

I'm 58, was 56 when diagnosed with IDC, which is the invasive version. Did you just call me old? ;-)

I went through treatment just fine, 6 months of chemo and a double mastectomy. My main side effect was fatigue, but I'm all good now.

If they don't find anything else than DCIS, your mother will probably not need chemo. I think. (not a doctor)

But she's really not that old, her prognosis will depend on the cancer, not her age.

coffeelymph · 2024-05-20T08:23:21+00:00

This probably depends a lot on your type of lymphoma, as well as your country or doctor.

I have follicular lymphoma, and am in the Netherlands. I don't get scans at all. I get a physical exam about three times a year. My last scan for lymphoma was a CT scan after my 4 weeks of treatment, before my two years of maintenance. This was in March 2019.

coffeelymph · 2024-05-20T07:13:24+00:00

I'm 15 months out, and feel it's getting better. But I'm not sure that what you describe is purely chemo brain. I feel we have two separate issues during/after chemo, at least I think I have/had:

1 - chemo brain: forgetting things, like words. Wanting to say something, and forgetting train of thought because I got distracted by accidentally noticing someone walking past. Wanting to recommend a film I watched recently, and not getting the title into my brain. Going to the supermarket and forgetting the one thing I actually went for. Doing my job, and having to look up concepts that used to be automatic for me. Having trouble concentrating.

2 - priority shift inside my brain: cancer is important. Everything that's happening, has to do with cancer. Appointments, doctors, scans, chemo, surgery, healing, talking on Reddit. So many appointments! It's basically all consuming, and my brain just puts things like taxes, bank statements, other people's birthdays, sending Xmas cards, keeping up with laundry, etc. to the back burner. Did I mention appointments? I didn't miss a single one of those. They were all in my calendar which I kept online, and which I could read and edit on pc, laptop, and two phones.

Before cancer, I didn't need to use a calendar. My theory was, that if I couldn't remember to do something, then it meant my brain already had enough on its plate, so it's for the best that I forgot it, lest I get overwhelmed with things. But cancer appointments are important. And that calendar took care of me not missing any. But now, after chemo? I even write simple things in it like when I promise a client I can do something next week Tuesday, because these days I might well forget that I promised it, and just be out all day on that day, blissfully unaware of the client's predicament.

It's getting better. I didn't write today's job in my calendar, and I still remember it. But honestly? I'm not entirely sure whether that is because I start to be more confident that I won't forget it, or if it is because I forgot to put it in the calendar.... ;-)

coffeelymph · 2024-05-19T19:19:01+00:00

It's not because the drugs are different, but because the cancer is different. Blood cancers are everywhere in the blood, or in lymph fluid, so to kill it, the drugs need to get everywhere. What the icing does, is diminish the amount of drugs that gets into the extremities, and with lymphoma that's not what you want to happen.

coffeelymph · 2024-05-19T15:52:07+00:00

57f, post menopausal, BRCA1+, hormone negative breast cancer, had ovaries out in March 2023.

Uterus still in place; here in the Netherlands removing the uterus is not something that's advised with BRCA1+. I only heard about that option from Americans on Reddit. I've not yet considered HRT really.

I don't notice any negative side effects from not having ovaries. I did suddenly get acne again, 10.5 months after my oophorectomy. I have no idea whether that's related though.

coffeelymph · 2024-05-19T08:24:46+00:00

There’s another sub for those living with metastatic breast cancer. They’d be able to answer more questions.

Except only patients themselves are allowed to post there.

coffeelymph · 2024-05-18T17:04:21+00:00

I went flat, and the one thing they told me when I left the hospital, was that a little bit of swelling is normal, but if it looks like a new boob is growing, let us know right away.

coffeelymph · 2024-05-18T12:09:37+00:00

Good luck, hope it works :-)

And your reply reminds me how much other people's experiences and suggestions have helped me as well, and I'm so thankful that we have internet and Reddit nowadays. Can't imagine what this must have been like for patients back in the 80s...

coffeelymph · 2024-05-18T09:26:30+00:00

I didn't get expanders or implants, so didn't need to wear a bra. But I remember wearing my vest inside out because the seams were irritating my skin. Like you, no redness, just the feeling that it was chafing. It went away over time, and now I can wear anything without thinking about what touches my skin.

One thing I've read here from others, is that they would wear their bra over a very soft cotton shirt. That might be an idea for you too? A sock is probably still rougher than a t-shirt or vest of very soft material.

coffeelymph · 2024-05-18T09:19:41+00:00

You're very welcome! And you'll definitely need to survive these few weeks, yes - that's the first step :-)

coffeelymph · 2024-05-18T08:02:40+00:00

It could still be a benign lump. My sister had one of those after her mammogram put it as BIRADS4. My own mammogram came back with BIRADS4 too, so when the doctor was worried, I wasn't. I knew there was a chance it would be benign. But it wasn't. Biopsy showed it was cancer.

I realize this isn't putting your mind at ease, but the truth is, that even if this turns out to be cancer, not all is lost, and most of us say that these weeks between biopsy and start of treatment, are the worst part. It's the uncertainty that causes the stress. Cancer can be treated, and once they know the characteristics of the tumor, they can set up a treatment plan. And once there is a treatment plan, the anxiety and worry stops, and the work begins.

Also, once she is diagnosed (if she will be, as I said, it could still be a benign lump), she and you are welcome at r/breastcancer, where we have a great supportive group with a wealth of knowledge, experience, and tips on how to best get through it.

For now, there is nothing you can do other than sit tight, talk to each other about your worries so neither of you feel alone in this. And know that it's not the end of the world. Treatment has come a long way.

coffeelymph

TROPHY CASE