TRIPLE POSITIVE GROUP

nanette7fl ... It is going to take time for your reconstruction to heal and the sensations stop. Every time I felt one, I sent energy to that area for healing. Like Special said, watch the ice. About 2 years after my reconstruction I had dry needling completed by my Physical Therapist where I had some numbing. She gave me some sensation exercises to do and I continue to do those. The numbing / itching has gone. Except for a very small area on the back of my left arm, I have 100% sensation.

Tresjoli2 ... If I am over stepping, just say so and I will delete this post. Here goes: this is your body and you decide how you want it cared for. One thing every doctor should consider is the mental stress of having breast cancer. Frankly, this guy of 15 years appears to me that he is missing the point about YOUR body and YOU. He said to you: "I will have multiple biopsies and episodes over the next few years ... When I told him, the period was unbearable heavy he told me he didn't doubt it.When I asked if we could just remove my ovaries and such, he said no - that he wouldn't do an invasive surgery when I had benign results ... ."

How invasive is "unbearable bleeding" and how invasive to your mind and body will be "multiple biopsies and episodes"?You are a young parent with multiple responsibilities. I think worrying about your female organs would be one responsibility you could get rid of.

My robotic hysterectomy came 30 days after my implant surgery. I went to breakfast with hubby the next morning. I did have lift restrictions and exercise restriction for about 6 weeks.

And finally, when ANYONE says to me "this was simply the way it was going to be," I retort with "as far as you know now". If the Sisters that walked before us accepted those lines, we'd still be without the Breast Reconstruction Act and having our girls cut off and thrown in the trash! We all need our Medical Teams to take the approach "if I could make this work better, how will I" … or at least that is what I want.

One more finally (LOL), pelvic / abdominal pain is the number one symptom of ovarian cancer with vaginal bleeding number three. I am not writing this to raise fear, but I think only a mind reader can be 100% sure that your symptoms are 100% from Tamoxifen. I had pelvic pain and that was the reason my GYN did the hysterectomy. He said it was not worth the chance not to do the surgery. Everything was benign and I did have abnormal growths in two areas. I am probably overly sensitive about this b/c one of dearest friends and an Executive Coach in our business has stage 4 endometrial cancer. Her GYN said last September / October (when her mass was TOO LARGE to biopsy in his office) that these masses are always benign, and she could wait until after Thanksgiving to deal with it. I guess by now you can figure out what I told her.

Welcome back, Moody Blues. I have missed you especially since I am off Facebook for Lent.

Also, I have been reading posts but not responding much. We have filed for conservatorship of my 78 year old Brother. He has dementia and Alzheimer's. He is in hospital and will never return to his home to live on his own. We have made arrangements for assisted living. It's not like sending a child to college in supplying his room. Everything has to be machine washable, simple, not confusing, calming colors, and so forth. I thought breast cancer was bad until I walked this journey. I lost my breasts but got a great rack in the process. He has lost his ability to reason, make decisons, and determine right from wrong ... there is nothing to replace these … only survive with what is left.

Have a great weekend everyone. Stay positive. Stay well.

Vicky

Vicky, I am not upset by your post at all! ❤ I love that you are all advocating for me and helping me process what is happening. I am trying to come to terms with the fact that the man who I trusted implicitly to deliver my babies, and who nursed me through multiple miscarriages might not be the right person for my new circumstances. It's a hard relationship to think about untangling.

My MO, for what it is worth, agrees with him on my ovaries coming out, but she took a slightly different angle. However, she is also thinking my period isnt coming back, that it was a breakthrough bleed. She is not worried about the mammo, and is recommending we wait 6 months, though she said it was my choice on the biopsy. She is talking to me now about maybe taking a break from tamoxifen after 5 years. She said to me that sometimes the complications from the treatment outweigh the benefits, and she thinks we may be reaching that point. She also told me she thinks my cancer was pregnancy induced...PABC - pregnancy associated breast cancer...Lots and lots to think about....

I love all of you and thank you for listening and being there for me. Means so much!

I realize that BC has given me more rather than less control over my life - or maybe you ladies have given me permission to take control. I wouldn't hesitate to leave a medical practice that wasn't listening to me. I have lost more friends to ovarian cancer than I have to BC as it is harder to diagnose. I have eliminated toxic and non-supportative friends. I have told DH that I won't visit my sister-in-law more than once a year because she is so difficult to be with. I have said no to more tasks than I would have earlier and my life is less stressful. Thank you ladies!

Dear TP ladies,

https://www.hindawi.com/journals/ijbc/2018/7835095...

I'm not sure if this article has already been discussed here. It scares me because I had not been aware of these cross-paths happening between HR+ and HER2+ treatments. As to my personal observations regarding recurrences of TPs, I sort of had become convinced this happens rather seldom compared to e.g. HR-/HER2+ or HR+/HER2-.

My daughter is awaiting her baby and is recommended to continue Tamoxifen after she will have given birth in October. She had HR+ very high, i.e. rather the luminal A type with typically residual tumor, so antihormonal therapy is probably on top.

Now I'm afraid the following antihormonal tx might be useless and recurrence ahead.

According to the article above one would need additional CDK4/6 inhibitor. But I can't imagine there is already a standard of this kind in the adjuvant setting without HER2 antibodies.

I'm so down and of course do not discuss things with my dd who is so very happy at the moment.

Do you have any thoughts?

Love to everybody, G

Gudrun - I know I have brought up the crosstalk convo here, as it played into discussion about whether the choice betweenTamoxifen or aromatase inhibitors (or ovarian suppression plus aromatase inhibitors for pre-meno patients) is better for those of us who are Her2+. The linked article goes into a lot of detail about molecular subtype and this is an important piece of info for TP people to know, but many of us do not. I was fortunate to have a BS who was participating in a study with Agendia, the company who does Mammaprint, so one of my biopsy samples was sent to them as part of his study. Most of us TPers don't have the benefit of molecular subtyping since the assumption is that we will have chemo, OncotypeDx is not available to us, and insurance will likely not cover this type of testing with Mammaprint or Pam50. We can guess whether we are Luminal or Her2 (ERBB) type, but it is only a partly informed guess. The discussion about adding the inhibitors (Ibrance, Verzenio or Kisquali) for those who develop resistance was interesting, and will prob be the wave of the future at some point - don't know if it will become routine with early stage treatment, as Herceptin and Perjeta both did after initial testing/trialing with metastatic patients. I think it is important to look at several things in regard to your daughter - I assume the stats in the sig line are hers, correct? If so, she was node negative, with intermediate grade, is close to 4 years out without a recurrence - so, likely out of danger of a Her2+ driven recurrence since those tend to happen quickly. The ER+ piece is the long game. I am wondering if she has a reset of sorts, having gone off of anti-hormonals to have a baby. I am hopeful that as she resumes Tamoxifen she is provided protection from it. Try not to worry - it changes nothing except to rob you of happiness today.

Gudrun - I believe that a knowledgeable pathologist might be able to narrow the subtyping down somewhat and it is kind of surprising in this day and age that this is not routinely provided on pathology reports. Without that info patients and oncologists are making the decisions in the dark to a certain extent if the patient does not respond well to standard treatment, particularly if it is neoadjuvent. It might be worth a consult with a pathologist to see if more info can be provided - often they are quite happy to talk to patients (or their mom!), they seldom get that opportunity.

I met with my MO today to discuss Nerlynx. He said pretty much what LaughingGull's new MO said - that for someone my age who is in good shape, that its worth trying, and there should be no problem getting insurance to pay for it. And that worst case scenario, I take it for a week, can't bear it, and stop. He mentioned the possibility of starting with two pills a day and increasing every week until I'm taking all six. I'll probably do that, as every time I think about taking six immodium, I swear my rectum screams "nooooooo!". Or maybe that was just the vegan chili I had for lunch.

I also asked him if there was any point in continuing to scan the lung nodules and he said yes, in case they grow but it isn't breast cancer and is something else treatable. Which I admit I had not thought of. He also said that if they aren't growing right now it doesn't really tell us that they aren't cancer because they could just be stable due to treatment, and we would have to scan them in a couple years to be reasonably certain they aren't cancer. So I will have a chest CT next week, at 6:10am which is god awful early, but I need to start getting up early anyway if I'm going to get back to trail running before work this summer.

At the end I asked him if there is anything else I can be doing to cut my risk of recurrence and he said nutrition and exercise. For nutrition, to just follow the advice of the dietician he sent me to at the beginning of treatment. At this point I had to tell him he never sent me to a dietician, but I'm not terribly worried because my diet is about as healthy as can be. And for exercise, do something that gets my heart rate up and gets me breathing hard for 150 minutes a week. Then he told me that if I came in and told him I was only going to do one of the four things, nutrition, exercise, anastrozole, or nerlynx, he would tell me to do nutrition, and exercise would be second. Because anastrozole and nerlynx only reduce my risk of breast cancer recurrence, but the other two reduce my risk of all kinds of things. Of course, I have no intention of dropping the AI since my SEs are few and very tolerable, but I thought that was interesting.

hapa et al. I wanted to re-post this meta-analysis that someone on BCO shared. I found it a short and sweet synopsis of current thinking about what helps, what hurts, and what doesn't matter in terms of recurrence. (And apologies if I got it from earlier on this thread--I really don't remember who/where it was posted! Might have been SpecialK?)

http://www.cmaj.ca/content/189/7/E268

(You can skip down to the "Summary of Key Findings.")

I also read the results of the trial where they went through the side effects of Nerlynx, and the duration of the worst bout of diarrhea lasted 5 days on average. That coincides with my experience so far -but it has not even been three weeks, so we will see how it goes.

Thanks Ingerp for that link, I am going to take a look at it now. I had a super healthy lifestyle already before cancer (athletic and lean and living on salads and fruit) so I dont find the exercise and nutrition advice all that reassuring.

hapa - it was a long surgical haul, and sometimes I did wonder what the heck I was doing, lol! I also was doing a Her2+ recurrence prevention trial at the same time and flew up to Washington, DC each month for that. Mayo def has low dose CT, every big center pretty much does - I would imagine you just need to request it.

Hi everyone, I’m recently diagnosed w/ BC and I’m scouting out all these forums. I really love reading about everyone’s experiences, SE’s, helpful hints, etc. Keep sharing, it’s very helpful. It’s also great to know that I’m not alone in this. I have a wonderful, supportive husband, but nobody really can understand all this unless you’re living it (or have lived it).

Cascadians You go girl! Great news on the weight loss.

Have a girlfriend that had her Plastic Surgeon "add on" a tummy tuck when she got her implants. She was already under and only paid a little out of pocket. Wish I have known before my exchange!

Also try Ayr Saline Nasal Gel for your nose.

Best wishes,

Vicky

No kidding, you don't even get a warning, I'll just be talking to someone and drip....

Thanks Laughing Gull. I have been thinking of you. Glad to hear that you are stabilizing. I am scheduled to start in early May, when we get home from vacation. Honestly, I am torn. Putting up with another year of side effects in return for 3% diminishment of recurrence? But three doctors said that I (and you) are the demographic targeted. Stay strong!

Tummy tuck sounds like a nightmare, and I wouldn't do it. From what I hear, it's as hard or harder than a C-section, which is a much, much harder recovery than MX, in my experience. Poor misery and a long time not working out and being basically crippled.

I looked into getting an eye job done with the reconstruction, but it would cost a fortune an, not much saving by doing it at the same time, because the anesthesia guy time, operating room time etc are computed separately.