TRIPLE POSITIVE GROUP

deni1661

carmstr835 and red332 - sorry you have to be here but this group of women are the best. You will find tons of information and support that you can't get anywhere else because we're all in this journey together.

red332 - coachvicky nailed it, you have a tough decision to make but it is YOUR decision. I had to have a mastectomy because I had 2 tumors and enhancements on the outer side. I didn't have to make a choice between lumpectomy vs. mastectomy so I feel your angst in having to make that decision. My advice would be to ask questions, lots of questions to address all your concerns. I met with my breast and plastic surgeons multiple times with lots of questions and went back and forth between removing one or both breasts. They were very patient with me, provided a vast amount of information on single vs double and fully supported whatever decision I made. Both doctors also made sure my husband's questions were all answered as he was very hesitant initially and had his own set of concerns. I greatly appreciated the extra time they spent with him.

I am very blessed to have a PS that is extremely talented and caring. This made it easier for me to fully trust him and today I am grateful for how well my body turned out. It actually looks better than it did before and I have peace knowing the diseased breast is gone. As individuals, we must all decide what is best for us. Our bodies, tumors, response and many other factors are all so very different which requires us to seek out as much information as possible to make the right decision for ourselves.

I wish you all the best in making your decision. We are here for you so please let us know how we can help.

carmstr835

Hi Red, I thought I would chime in my reason for bilateral mastectomy. I had bilateral idc. There were many other mri focus spits that would need to be biopsies if I chose lumpectomies. I opted for the mastectomies mostly because I did not want the radiation treatments that are required for lumpectomies, however I had lymph node involvement on the right side so I still needed the radiation. Good luck to you!

Cind

PatinMN

HapB, what are your ER and PR percentages? My ER was 26% and I ended up stopping tamoxifen after a year. My MO showed me info and graphs indicating the estrogen blockers are of less value for low ER percentages.

rljes

HapB - I havn't started my Anti-Estrogen pills as yet - but I wonder, do they have labwork that shows how much estrogen is in the body, and with those results, how much Anti-estrogen should one take? Are people who are on Anti_Estrogen Pills monitored for their Estrogen?  Or is this a mute point/ or Am i misunderstanding the point of taking Estrogen blockers? 

Also, is there a time limit of taking the Blockers?  If your this uncomfortable, maybe wait and get a second/third opinion?   Just my opinion.  Your going to have to make the decision.  Best of luck finding your answers. 

LTWJ

I’ve been on Anastrozole for 45 days now and I have no side effects at all from it. I’ve had 1 infusion of Herceptin and my food taste is going away again, it says altered food taste can happen. I’ve been in menapause for 4 years now and am 56. My BP is ~140 now, I was on bp meds for a few years but while on chemo my bp was 90/45so they had me to stop the meds unless it starts to get high again.

ElaineTherese

Even after the ovaries stop producing estrogen, the adrenal glands and fat tissue continue to contribute to estrogen production. Personally, I would try the Anastrozole as I was 95% ER+. But, I never had such awful SEs from any of my breast cancer treatments.

That said, the only time I ever called 911 (acute pancreatitis), my insurance company gave me a really hard time when it came for paying for the ambulance. I'm not sure your MO's advice was super helpful!

shelabela

Happy New Year ladies!

Cherry-sw

Happy New Year, everybody

KimCee

Happy New Year 🎊. May 2018 be better.

rljes

HapB - Can you get a 3rd opinion?  I know its such a hassle.  I live alone and whenever my pain specialist gave me new medication, I felt the same way as you - I would stare at the bottle, read the side effects and be terrified I would have such a severe reaction I would have to call 911.  And there were a few times I should have.    I can't make the decision for you, and I don't know the whole story, but if it was me - I wouldn't take the new pills until I got more information.   Quality of life.  What kind of life would you have terrified your going to have a stroke or heart attack?  Research!  Best to you HapB.  Thinking of you. 

deni1661

Hapb, based on the stats you provided it seems the benefit in your case is not worth the risk. The small percentage for all the SEs and anxiety it is causing seems overwhelming. The decision is yours to make as our bodies and how we each respond to the drugs is so unique. We are all faced with these difficult decisions at some point when diagnosed and all I can offer is that I chose to skip chemo in favor of limiting damage to my body. I worry that was a risky decision since there are no hard facts for survival with just HP but I am happy I did the trial if it leads to better treatment in the future. I am on Letrazole now and my SEs are not as bad as they were on Arimidix - another example of how our bodies respond differently. Aches and pains are tolerable if they don't hinder you too much from quality of life but damage to your heart and the potential for a heart attack or stroke is pretty scary.

I'm sorry you are faced with such a tough decision. Your faith will lead you in the right direction. I pray you find peace with whatever you decide. You deserve to continue feeling better and moving forward to happiness.

Happy New Year everyone, may we all be cancer free and healthy in 2018!

coachvicky

Happy New Year All.

When I got the "news" in June 2016, I didn't know if I would see another New Year.

New Year 2017, I didn't know if I had the strength to finish treatment nor how I would be on the other side.

This morning, I awake alive, healthy, grateful and blessed.

Stay strong.

Vicky

shelabela

I am coming up on my 1 year "anniversary " and i am such an emotional wreck. How about you ladies you have reached that milestone? I have so many feelings and i know i am not the same women i was before. My husband does bit understand.

I am scheduled for a survivor counselor at my cancer center. Anyone have this type of appointment?

red332

Thanks, CoachVicky and everyone who responded to my post. Hope everyone had a peaceful new year. This decision is causing me more stress than the chemo, quite frankly. At the moment, I am inclined to do the re-excision, if only bc that will give more more information/certainty. I tolerated and recovered from the first two surgeries very well. If the margin is still not clear, then mastectomy would be an easy choice. And if it turns out that pathology turns up nothing at all, then it's an indication that the chemo/herceptin is doing its job.

Tomorrow I'm sure I will change my mind again. But I'm seeing my oncologist and hoping she can help me with more info/clearer statistics (she had been deferring to the surgeon up to this point).

PoseyGirl

Happy New Year, everyone...

Hapb, I can Completely understand your terror of triggering any issues with your heart that is going through so much. I definitely concur with you and others here that taking a break at the very least is a good idea. Let your heart have a 'normal' back. And in that timeframe, if there is a way to get further expert advice on this, that would be good.

Shelabela, you are completely normal. I am 1.5 years out and I still struggle. Christmas was very hard last year, and apparently that is normal (not to mention it being your one year). Just this morning I explained to my husband that I am no longer the same, that I always feel close to the edge, that I know my anxiety is up...he is a highly supportive husband, but I know that my quickness to meltdown is starting to get hard for him. We are all different to begin with, so how we cope with a trauma is different too. What you are feeling is to be expected. I believe I need help, and you might need it too. Many outside our experience think that once treatment is done, that we will 'come back to normal'. I understand why they think this...they too want to move on and they so badly want us to feel better. So they see hair regrowth and a nice sweater and your smile, and so badly want to say "yesssss!!! Wahoo!!!"...so I don't hate this in others; it's human nature. But the reality of this is that we've been fundamentally affected in a manner that's is so far beyond the physical. We not only have to heal our souls, but learn a new way of living. How can we expect to "nail" it in a year? God Bless those who can. My New Year's resolution? Get help, love myself, go easy on me. Cradle yourself like a baby. Sorry for the dramatic statement, but you writing this was poignant. I hear you, and wish I could group hug you and everyone here. You deserve every blessing xox

ElaineTherese

Yes, AIs are associated with mood swings and HapB said it best -- after a few weeks on Aromasin, I felt like I had PMS! But, with the help of Celexa, I feel better.

I anticipated that Aromasin would probably make me moody because I suffered from extreme moodiness while PMSsed and pregnant. Hormonal changes just do that to me.

Cherry-sw

shelabela, I had it all in mind and red what Posey wrote and I have nothing to add, I will second every word. The link coachvicky shared a couple of months ago, the one called Dear cancer patient, I am sorry I dis not get it... I sent it to my cancer rehab councelor, to my manager, I forced my husband to read it, well, because he does not want to read anything that is bc-related, he says he has enough of it already and I just think well, yes, he gets enough, what about me? But Posey is right, everybody gets tired. My dad is not a people person and when I got this diagnosis and he once asked me how I was doing when I was doing awful, and I answered, well, dad, how am I doing? I got cancer. He felt offended, we communicated through my mom who has been staying with us, he told my mom, what shall I tell her? I tried, she snapped at me that she had cancer. So he chose not to talk to me at all. My mom said, honey, you know how he is, like what is here to talk about? So my dad has just been diagnosed with prostata cancer, they are not even sure about staging yet, poor mom flew home at once.Now he wants to talk and he appreciates me calling and writing, he is proud his friends are not leaving him in limbo. Now he gets me, or us all who has been living with a diagnosis. Yesterday I called them to wish a happy New Year and asked him how he is holding up and he was sad and said that everything is still uncertain and now he got this cancer. And I thought isn't it ironic, nobody gets us unless.. You should tell it to your husband and your councelor to everybody that it lingers on, you are on the mens not only on the outside but on the inside as well. You are so tough, shelabela, you will get through it, just make yourself a priority right now. You know, these anti-depressives helped me a lot. But yesterday I did not take it because I had half of bottle of champagne, oh, how I missed it)))) Hugs,Cherry

memphis16

I was diagnosed with stage 2b bc last year. Had surgery, 6 rounds tchp, radiation and continuing herceptin. I havehad 13 herceptin infusions but heart and lung function are down. I have to decide whether to complete the last 5 infusions or stop and begin neratinib. Anyone had to make this decision?

memphis16

Thanks for your response HapB. Too many difficult decisions! I know I have to make them but input is helpful

ElaineTherese

HapB,

Many of us weren't diagnosed at Stage IA. Your Predict2 results don't apply to me.

ElaineTherese

Well, my numbers are more supportive of hormonal therapy than yours. At 10 years, I could be one of the lucky 14!

Five year survival

66 out of 100 women are alive at 5 years with no adjuvant therapy after surgery

An extra 9 out of 100 women treated are alive because of hormone therapy

An extra 17 out of 100 women treated are alive because of hormone therapy & chemotherapy

An extra 22 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab

Ten year survival

33 out of 100 women are alive at 10 years with no adjuvant therapy after surgery

An extra 14 out of 100 women treated are alive because of hormone therapy

An extra 28 out of 100 women treated are alive because of hormone therapy & chemotherapy

An extra 37 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab

moodyblues

poseygirl. I love what you wrote. Perfectly said.

Melanie

Lita19901

Elaine, Hap - actually, the 9 who will be dead in 5 years aren't necessarily from BC.

If I play with the age at my diagnosis t 5 year intervals it appears that some of us are going to kick off just because of age.

The part that I find really confusing is this: If I was Her2 negative but everything else stayed the same, chemo would not have been offered but AIs would. Yet at 10 years, chemo would have saved 1.5 women and the AIs only 1.8. So why not chemo if the AIs are absolutely necessary for everyone??

KimCee

Yes, Posey...I hear you completely. Shelabela, been where you are before and am going to go through it a year from now as well. From experience, it took a good 8 to 10 years to feel like "I got this". Well, no, I ain't got this because here I am again. This time, being Her2 positive scares the poop out of me. I'm doing what I'm supposed to but feel like my life has been robbed and not sure I'll ever feel normal again. Group hug for sure xoxo

As far as those talking about AI and being crabby, or short, whatever. Ya know, I never really gave it thought but as I'm reading it, I think I was quite crazy the 9 years I was on those things. Looking back, I definitely did and said some things that created life long changes. Most, not for the best. I think of the things I argued over, fought about, pushed people away about and it's totally bizarre. I sure hope I pay attention to this, this time around....I don't want to end up like that again.

Lita19901

Kim, were you on AIs or Tamoxifen for 9 years?

deni1661

Hapb - the mfg of my Letrazole is TEVA PHARM and Arimidix was ACCORD HEALTHCA. This is what I see printed on the bottles.

SpecialK

lita - my guess about that is that with the advent of genomics for the chemo determination - OncotypeDx, Mammaprint, Pam50, etc., there is more information about the benefits of chemo for individuals, and more data gathered about benefits for Luminal As and those with very small tumors. Prior to this info more of us received chemo. There are not enough good current testing processes for determining whether there is benefit from anti-hormonals so the standard of care of that everyone is encouraged to take them.

hap - just wanted to note that early stage breast cancer includes up to stage IIIA, so much larger tumors and node positives are included. My stats, and Cancermath and Predict results, are much like Elaine's so I had no question about whether or not to do the treatment.

deni1661

Happy New Year! May we all have a much better year than last.

Hapb - I thought it was interesting what you said about Letrazole and mood swings. I have noticed that I get random bouts of crabbiness, increased anxiety and/or mild depression. It doesn't happen often but when it does I have a hard time getting myself out of the funk. It usually lasts no more than a day or two. I recall this topic previously and thought someone mentioned it could be related to fluctuation in estrogen levels. If that was the case, wouldn't all of us have these mood variations regardless of the medicine we're on? Or could it be that every once in a while we need to give in to the flood of feelings that are part of dealing with cancer?

I'm inclined to think it is part AI and part cancer experience. I write in a journal every day and I did notice that my last funk was short lived compared to previous bouts. I meditated more and removed myself from stress triggers and it seemed like these coping strategies may have helped. I don't really know for sure - just thought I would share.

A triple positive friend of mine just had her yearly check up - she is about 3 years out from her last treatment. We both go to the same hospital and I was there for my 3 month check up. I told her about my anxiety and she said the same thing happens to her every year. I think the stress/anxiety/depression for us triple positives is always present and maybe the AI makes it worse.

I don't want to have this fear/anxiety for the rest of my life and plan on doing what I can to manage it in a positive way. Not sure what that looks like just yet but I am going to figure it out! I may not be able to do much about the crabbiness and depression though except be aware and get help if it gets too bad.

deni1661

KimCee - triple positive is scary for sure and we are always in need of group hugs. I thank God for you ladies every day

KimCee

Lita, sorry... I was on Tamoxifen for 4 years and Femara for 5.

Thanks KB and Deni. Sending another group hug 🙂