TRIPLE POSITIVE GROUP

Hi Al,

I've Been taking a break - It seems my severe Hot Flashes are triggered a lot by anxiety, so I've been staying off the internet.

rlmessy - I really do understand your "Decision Fatigue" factor. Completely understand your frustrations. If I were to have a "do over" I would have went with a different team/hospital. I think you had mentioned not starting chemo for several months due to Insurance... {Maybe you?} I didn't start chemo/Herceptin until almost 5 months after my BMX due to my MO telling me I wouldn't have any SE with chemo. That turned into a long battle between us.

I did have a dbl BMX even though it was only 1 breast involvement. Insurance was ok with it, but had to talk my BS into it.

Wheatscapes - Yeah for your Pet results.

Missouri Cat. I had to stop my Herceptin twice due to heart functions dropping. I was getting a heart eco before each Herceptin treatment. But it bounced back after all was finished.

Trying to get caught up - wishing all the best.

Tresjoli2:

That really sucks. Bleeding is one thing I don't miss. I hope the Lupron stops it.

Hi dear tresjoli,

So sorry to hear that you are back with those bleeding episodes! Hopefully the results will come before the holiday. Can you call them and press them to deliver them before the holiday? And here is hoping for a benign result.

Even with a benign result though, this sounds terribly scary and annoying. What is the advantage of keeping your ovaries, if you need long term ovarian suppression, are done with babies, and the hormone treatment makes you live in fear? I truly don't understand this. I know I am older than you, but I am very happy I did oophorectomy + AI. My only real side effect is dryness everywhere (especially down there -which sucks but I don't think it would be much better under Lupron + Tamoxifen, would it?) One and a half year out from starting AI, I don't really have joint or bone pain, very few hot flashes (even after weaning off Effexor/Venlafaxine), and I am feeling better than ever. I don't miss having a menstrual cycle and I am free of worries from bleeding, ovarian pain (they discovered a bit of endometriosis when they took my ovaries out) or uterine "proliferation".

BIG HUG...with you on the journey, sister!

LaughingGull

This might have been asked before but does anyone know the average time between surgery and recurrence for triple positive IDC?

WC3, this following link might confirm what ElaineTherese says:

https://cancerres.aacrjournals.org/content/79/4_Su...

ElaineTheresa, Gudrun:

Thanks for the reply and the study.

That's interesting that the risk of recurrence remains higher in the long term in the HER2 negative, ER+ group than the HER2 positive, ER+ group. It seems to imply that the estrogen receptors in the HER2 positive group do not play as active a role in cell proliferation as with the HER2 negative group. I wonder why.

WC3–when I got my 2018 dx my RO told me that HER2+ tumors are more aggressive but have better outcomes, specifically because of Herceptin. I too am thankful it was available for my treatment.

Boogirl,

What an insightful and thought-provoking post. You articulated beautifully what I ponder every single day. My diagnosis was different than yours—I was diagnosed in April 2018 with Stage 3C triple positive with lots of positive lymph nodes. I truly believed I was going to die, and I kind of shut down emotionally, put my head down, just showed up and did my treatment. I was lucky and got a pCR after my mastectomy in October 2018. For the first time, I started believing that I might not be toast in the immediate future and thinking about what the cancer was “supposed to mean.” I finished up my Herceptin, had a prophylactic mastectomy on the other breast, a hysterectomy, and started Nerlynx and an AI. I’m tired and achy, but I’m alive and so, so grateful for that, especially considering where I started. And I’m grateful for all of the same things you mentioned—a loving and supportive husband and family, co-workers, and great insurance.

I have a very demanding and stressful job that pretty much defines me. I returned to work full-time in January after the first mastectomy and radiation, and I walked into a utter s*** storm that has led to many sleepless nights and tears. I often question “what if it recurs—is it this how I want to have spent these cancer-free (as far as I know) days?” I spent October through December (when I finished radiation) in my cancer-bubble world and it was as if real life was suspended. I spent a lot of time making all kinds of promises to myself that things would be different and I would lose my control freak, Type A personality, but about two-and-a half hours after returning to work, it all went out the window.

But several months ago I read something that Hapa posted. Let me say that I think she is one of the most introspective and honest people on these boards and is awesome. She posted something about her stressful job, but noted that she realized that she actually liked being in the thick of it when bad things happened at work—something about enjoying the adrenaline, knowing what was going on, and being part of of the fix. When I read that, I felt like somebody poured a bucket of cold water over me. I was so conditioned to whine “I’m so stressed” that it never dawned on me that it might be okay to see the stress as stimulating and acceptable.

That’s where I am now and I still don’t know whether I want to stay in this job, or whether it’s so bad if I do. Part of me believes recurrence is inevitable and I need to stay for the great insurance. Right now, I’m trying not to look at cancer as a life-changing, life-defining catalyst, but rather a nudge to get me to change my perspective to just be more honest and accepting about how I really feel about things. I may end up changing my job, selling my house, and moving back to my hometown, but in the meantime, I don’t want to be so fixated on “should I” or “shouldn’t I” that I overlook the good things in my currently imperfect situation.

Sorry for rambling, but your post struck a chord for me. I also appreciate all the posters who raise these questions and make me think.

Hi Everyone,

I haven't been here in a while but it's great to see everyone helping each other get through this. I learned so much from this forum.... and continue to... Anyway, it's been over 7 years since my diagnosis of Triple positive, 2B. And I've now been on Tamoxifen for 6 years. My side effects are manageable, but I'm worried about it being a drag on my system. I feel it's messing with my blood sugar because I now get yeast infections really easily,and it messes with my digestion and skin. I can mitigate with supplements but I'm so ready to be done. Yet I'm terrified of not taking it. I don't want to switch to an AI. How many years of tam/AI are your MO's recommending these days? Is this indefinite?

Gudrun,

Thank you, that article is encouraging. I'll see what my MO says next time I see her.

I was just curious to see what others are doing. Since I've been on tamoxifen ever since I finished chemo, I don't really know what my body's new normal is now that I'm a post-chemo menopausal 54 yo (and not a pre/peri-menopausal unmedicated 47).

ACK - need some reassurance! I just received my pre-authorization for my DMX. Everything is authorized BUT it states it is covering OUTPATIENT facility charges. I was told and expected at least an overnight in the hospital. My procedure isn't even scheduled until 11am. Has anyone done a DMX outpatient?

wanted to come and report back that my endometrial biopsy was benign. So that part was a relief. It was 8 months between bleeding episodes, but my lining is very thick from the tamoxifen, and the bleeding is so heavy and debilitating. I went anemic I lost so much blood. Sooo...now MO wants to put me back on lupron. I hated lupron, but I can't really live with this unexpected demon of the "psycho bleeding episode at any time in your life" either. GYN said endometrial ablation was an option, but if I did get endometrial cancer it would be very hard to tell if he did that procedure. Both said I had to keep taking tamoxifen.

What to do...what to do...

rlmessy:

They might very well intend to send you home the same day but hospitals are doing a new thing now where they are billing overnight patients as outpatients. I had a 4 day hospital stay billed as outpatient. It's ridiculous.

As I understand it, they do this because if they bill as inpatient, the bill is not as itemized and the insurance can reject the whole thing. If they bill as outpatient, there is more itemized billing and the hospital can seek payment on each item seperately.

Hi heartshapedbox,

I also had mastectomy with ALND. For me, the plan was that I was going to stay only one night at the hospital, going home the next day. I was very concerned about this plan, because I thought that I would need more time to recover in the hospital, and that I wouldn't be in good enough shape to go home so soon. I even asked beforehand about staying a few additional days in the hospital -the answer was no. In the end, I found the recovery easier than I anticipated. I spent that one night in the hospital, and I had a roommate with noisy visitors; early in the morning the next day, I begged to be sent home. Really, I didn't need hospital care (or painkillers, after the first day I was fine with Tylenol), and I was much more comfortable at home. I had good support at home with my parents, though, I didn't have to do any chores and could really focus on recovering, not sure what support system you will have at home post-surgery. But this is very doable. You will be sore for a few days and the drain is annoying, but you get better quickly. Will your mastectomy be single or double?

I also started right away with physical therapy to recover mobility, and with gentle exercise...going out for long walks, then cycling classes, physical therapy, would go to the gym to do stretching exercises. I am a swimmer, and I was back in the pool as soon as the incisions were closed, one month later, and I was able to swim all strokes including backstroke, and stretch all the way.

Best of luck with your surgery!

LaughingGull

When I had my BMX, I stayed 2 nites, because they couldn't get the pain under control, plus I was going home alone. I had no one to help me. They eventually set up an RN to come out twice a week for the first week, but that first night alone was terrifying. I'm surprised I didn't get a raging infection at home from not changing my bandages. I couldn't do it myself.