TRIPLE POSITIVE GROUP

Hi rimessy, the main reason that I saw to do neoadjuvent chemo was so that they could test whether the chemo was working on my tumors. For example, after 2 treatments of TCHP, I had an ultrasound that showed that the drugs were working. If they were not working, then the MO could have the option to try a different drug combination that was more effective. Once you take out the tumor, there is nothing to test unless you get more tumors. Since each individual could react better or worse on a drug regimen, I found this approach comforting. Since my MO and I were on the same page, things were easier for me. I’m sorry you’ve had some challenges with your treatment team. I hope things get better. Best wishes for a successful surgery next week

Has anyone taken a break from tamoxifen to have a baby? I’m 35 and was planning on having another baby. My MO says it possible, but I’m worried about the hormone changes during pregnancy contributing to recurrance.

Dear Jkeet, my daughter is one of them.

You might just follow the threads about becoming pregnant that I was taking part in.

I tried but was not able to link these threads here.

Best wishes to you, G

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!!

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.

Willa, thinking of you and understand how you feel. Keep us updated....hugs.

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!

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.

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. 

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. 

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.

yaaaayyyy so happy for you!!!

Cowgirl congrats and those of us newer to the journey are curious if you noticed any <hopefully positive> changes after you went off it?

willa, so very happy for you !!! Thank you for letting us know!

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 ….