TRIPLE POSITIVE GROUP
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Elaine, I’m 90% ER, 90% PR and 3+ HER2. Oncologist thinks I can try, but they don’t really know.
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Jkeet...I am totally not an expert but I have been researching natural ways to counteract the estrogen dominance, I am at 100%. I am looking at food sources rather than supplements as my first line of defense.
Are you in an area or position you could try to find a nutritionist that could work with you through the pregnancy? It might not be enough but it might be something you could safely do throughout a pregnancy.
Thing is once you start the pregnancy I would assume most treatment and diagnostics would be put on hold unless something dramatic happened. So, you would not know what was working and what was not I would assume.
I applaud you for wanting to grow your family!! Children are a joy!!
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Hi Beauties:
I don't come here much any more because I had to take a break from all things cancer. However I keep you all close to my heart.
I'm writing because I have been waiting more than a week for MRI results (regular screening). Initially the tech didn't capture all the correct images so I had to go back a few days later and then when I did go back one of the images was left up on the screen that showed a big white spot. This was Thursday. So my fear is unmanageable. I decided that I somehow became a radiologist over the weekend and there is no other possibility besides cancer. I have heterogenously dense breasts but for some reason (advice of breast surgeons and oncologist and my own desire at the time) I only got a single mastectomy. Now I am kicking myself. I am imagining another round of mastectomy and chemo and just awfulness. And the pain of this for my husband. I have tried deep breathing, distraction, meditation, doing anything I love as a way to keep myself centered. But I am frozen in terror.
My onc and surgeon are aware I am waiting for results. My husband and family do not get my inability to function and my friends have absolutely no clue and don't even want to know details. I feel really alone and (unfairly) angry at everyone in my life.
Thanks for letting me share.
I wish you all love and peace with decisions that are being made...
S
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Oh, Willa, I am so sorry that you are going through this. I can definitely relate to family not understanding how this can make your life come to a screeching halt, while you wait. I wish I could offer you some comforting words of wisdom, but all I've got is a virtual hug, and my heartfelt sympathy that you have to go through this unnecessary delay. Take care and let us know when you get your results. You are not alone. Gentle hugs.
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Thinking of you, Willa. Looking back, I absolutely know that the waiting was the worse.
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Willa, thinking of you and understand how you feel. Keep us updated....hugs.
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Call them in the morning. Of course the wait is driving you nuts. Sometimes a little nudge can help.
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Willa, of course the waiting is making you unable to think and function normally. Scanxiety really brings us to all the worst places. Like you, I had a UMX and regret not having a BMX-.Each scan (always with a callback) is torture and honestly makes me delay going- which is bad. Big Hugs to you!
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Tess, Taco, MACTAZ, Ingerp and momwriter, thank you so much. Your deep understanding and kind words feel like a safety net. Hugs to all of you.
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momwriter and willa: I also had a UMX, and six months down the road, I had the second, prophylactic mastectomy.
At the time of the initial surgery I was not sure, but later I realized I did not want to have that remaining breast. 20+ years of imaging of all sorts (ultrasound, mammogram, MRI) plus thorough exploration proved completely useless to detect my cancer early, and I did not want one more of those exams or tests. Never regretted it, not even for one second. Just saying -maybe you can still get the second mastectomy, and be done with mammograms and MRIs.
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hi lovely ladies
haven't been on this thread in quite some time but I do try to read this thread when I can...I see some of my old posse here, Hi SpecialK!!
for those asking about hormone therapy - the article posted here about her2 and hormone positive BC and recurrence after 5 years is the one my MO (I think) referring too. I have been on Tamox for almost 8 years and was just given the blessing to stop at my last appointment. The studies are showing 7-8 years as good as 10, my MO also referenced that for her2 positive most recurrences are in the first 5 years
I don't really understand the impact of hormone positivity on our tumor biology vs her 2 neg as it relates to the risk of late recurrences -if someone could explain further that would be much appreciated!
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LaughingGull and momwriter: After the way I have felt for the past 10 days I know that if I make it through this round of MRIs without cancer I am going to have to get a mastectomy on my good side. The fear I feel now is so much worse than what I felt at initial diagnosis. I think with the initial diagnosis there was a bit of the thought that "well, I can reconstruct" and "chemo will be horrible but then I'll be okay". Despite the fact that I thought I was fairly educated about BC I didn't understand the recurrence rates, the different biologies and the fact that lots of times things don't work out. The percentages of death/recurrence of early stage are so much higher than I ever knew. And reconstruction can be fraught with issues. Anyway, LaughingGull, thanks for your response and I am so, so glad you are happy with your decision.
momwriter - is getting a prophylactic MX something you would consider at this point? When you got MRI call backs did you have to get biopsies? I've had a lot of 3D mammo call backs but not MRI.
I've been thinking a lot about this (vast understatement) and am curious as to why surgeons and oncologists just say that overall survival isn't really affected by getting the BMX and they wouldn't suggest removing a healthy breast. (I know the discussion may different for BRCA) What is missing in this discussion is the torture of endless f/u with 3D mammos and MRIs, our increased chances for getting contralateral BC and the considerations for those who have dense breasts (2x likely to get BC and not seen on imaging), where all this testing is sort of just a CYA activity anyway. Nobody talked to me about any of this at diagnosis. Maybe that would have been too much info to handle but I would have liked to have known. I blame myself for not figuring this out but I am also mad at my providers. Actually, very MAD. I think once we have had a a lumpectomy, mastectomy, chemo, radiation, etc, all that we go through, then we are likely often less willing to think that a 5% or 10% risk of cancer in the other breast is a low number because we have lived through the treatment. At the time of my UMX I wanted so much to keep my body. I am a bit slow but now I get that my body as I knew it is gone, no matter what else I plan to do.
Rozem: Thanks for asking your question. I am curious as well about what drives triple positive recurrences. I don't know much at all and am wondering what others have to say. I think it may depend on the percentages of HR+ and HER+ so it might be different for each individual. I'm glad you can stop Tamoxifen. XX.
Thanks, All.
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willa,
Like you, when I went through treatment and surgery, my concern was the cure for my cancer breast; the other breast, and anything concerning it were afterthoughts. But when the cancer surgery found a 2.5cm solid tumor in my cancer breast, plus macrometastases in two nodes, neither of which showed up in the pre-surgery MRI, I decided I was done with having breasts (extremely dense tissue) and breast screening. For a minute, I was disappointed at my providers, too. Then, when I explained my feelings to them, they totally understood and were 100% on board for the prophylactic mastectomy, both the MO and the BS. They have an obligation to err on the side of conserving...if the medical reason is not that strong, and they recommend a prophylactic mastectomy, and then you regret it, you cannot bring that breast back. You need to drive that request. And they were also focused on curing you, on your treatment, your cancer treatment. The bottom line is that you can still get it out, now that you have made up your mind. I breathed a big sigh of relief when I had that remaining breast out.
On the triple positive recurrences, what I have read is that if it is HER2-driven, it happens more often during the first five years, whereas if your recurrence is hormone-driven, it can happen at any time.
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LaughingGull - Thanks for being a voice of reason. Of course you are right about the BS and Onc erring on the side of being cautious with mastectomy. I'm just overly emotional and frustrated. A bit of a whackjob from the mri anxiety. I understand recurrence the same way you do
Wishing all a good night.
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Willa, we understand what you are going through, our minds can play havoc with us. There is just so much info we have to process in such a short time. That’s why this thread is a great place to come - you feel safe to vent your frustrations and also get some good “food for thought”. I wish you all the best.
And to all on this site, I wish everyone a most joyous holiday season....we deserve it. This time of year can be difficult at times but it is comforting to know you have a great big support family here
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Can you log into your Patient Portal and see results? Sorry for your wait, I hope the ole saying is true, no news is good news. I too have been waiting for my bone scan results for over a week and my appt is not until next week., it was finally posted today in my patient portal, "NO FINDINGS". Wishing you the Best.
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MACTAZ and Kimmh - thank you for helping me feel less alone and less crazy. Something happened with the reporting of my MRIi and though I kept following up I just got the results today, (My provider doesn't release results in portal - good or bad - until there is an actual discussion). Everything was fine with the MRI though I feel many years older.
I'm grateful for this news but I'm especially grateful for all of you here. This forum has been a gift so many times over the last several years. I hope that I am able to pay it forward.
Sending everyone so much love. May you feel joy, peace and comfort over the holidays and always.
XX.
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yaaaayyyy so happy for you!!!
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Rozem, how nice to 'see you' here. I too was able to get off arimidex before the 10 years. My onc told me about the 7-8 years being as good as 10. What a relief. I hope all is well with you.
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Cowgirl congrats and those of us newer to the journey are curious if you noticed any <hopefully positive> changes after you went off it?
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willa, so very happy for you !!!
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willa, so very happy for you !!! Thank you for letting us know!
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congratulations, Willa... been saying prayers for u
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in regards to the question about how I feel...no different yet but its only been about 2 months since I have been off tamox, I think it takes more time to completely leave your system. I think I am expecting a lot more than going off will deliver...better hair, complexion, weight loss, sleep blah blah!!!
I forgot to mention the other reason I was given the blessing to go off is that my MO said that at this point the biggest benefit is preventing another BC but since I have no breasts ….
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CONGRATS Willa, so glad to hear the good news.
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Thank you all for such support about my MRI!
Much love.
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Ingerp, I felt so much better after I stopped taking arimidex. One of the first things I noticed was that I could kneel on the floor (as in changing cat litter, wiping things off the floor). My knees didn't hurt! I also think I had quite a bit of neuropathy in my feet--mainly my feet would hurt and kind of have hot spots and I wouldn't feel steady at times. That is gone. The biggest change is how much, much better I feel mentally and emotionally. I had quite a lot of anxiety, and I was on meds for that, but I still felt anxious and also depressed. I also lost about 45 lbs--a bit of that has come back but that ok because I don't have the facial wrinkles I had when my weight was lower. So it does get better and I just want to say to those of you who feel like you are just slogging through, I felt that way too. It does get better and I know you can do it. Much love to you all.
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Cowgirl--that is really good to hear! I can't say my SEs have been horrible, but I am <much> more tired and definitely have some brain fog going on. I feel like I'm resigned to living like this for the next four years (at least). Congrats on making it through, Cowgirl!!
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Hello my friends, Angels Gal here,
Sorry I haven't posted lately. I have been connected, reading the posts that come in. With working a full time (40 hrs) and the fatigue that comes with AI's I enjoy coming home and taking a long nap every day.
Today is a big day for me. My 4 month check up with Oncologist. We shall see if I continue to be the healthy girl my Dr said I was back in September where my numbers were very good. I know that the first 5 years are the most critical for us Her2 triple positive gals so I will be ticking off in March 2020 the beginning of year 3 since Diagnosis and chemo began.
This is such an amazingly supportive place. I love the virtual hugs and affirming words even when times are confusing and tough.
A very merry Christmas to all, and may we have a blessed New Year too!
AngelsGal
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Cowgirl, thanks for chiming in. It is nice to know that there are people who made it through this. It gives me hope I can also do it
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