Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee

TonLee wrote:

This is primarily for people who find themselves with THREE +'s by their diagnosis. 

If you are new to breast cancer, please click on the link below and read.  It is "What I Wish I Knew At the Beginning of Treatment."

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Nov 6, 2021 10:53PM 1982m wrote:

I wish their was a magic food or activity to do or avoid, but there isn’t. Excess sugar is not good for health. Excess most anything is bad. Fruit has lots of healthy fibre, antioxidants, vitamins etc. If you want fruit, eat fruit. If you want chocolate, eat some chocolate (just don’t eat only chocolate!). I asked to speak to dietitian right when I was diagnosed and they said just eat to tolerate. I asked about protein or deficits etc. They just said eat what I can. I normally intermittently fast and asked if that’s ok. They said if I tolerate it, go ahead. There is no magic one size fits all nutritional advice (from what I gather).

The one thing my medical and radiation oncology suggested is exercise. If you can, get a bit of exercise. It can help with the anxiety, but it’s also a evidence based action you can do that has positive impacts of cancer before, during, and after. It’s not much but veryday since I’ve been diagnosed I’ve walked. I’m not hugely athletic but I bought a treadmill and walk a min of 30 min a day every single day. On days I have chemotherapy I walk 30 min before I go. It’s one thing I can do for myself, my mental and physical health.

Dx 7/13/2021, IDC/DCIS, Left, <1, Stage IA, Grade 2, ER+/PR+, HER2+, IHC
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Nov 6, 2021 11:02PM phelps128 wrote:

Thanks guys for replying. I will try to start walking. I have not left the couch since this Wednesday morning of biopsy.

I’m confused on what is better surgery before chemo or chemo then surgery. I also read that having a high % HR+ is a bad predictor of Herceptin efficacy. I’m scared that the herceptin won’t work for me because it’s 90%. I met a breast surgeon yesterday before I got my biomarker results back, so trying to figure this triple positive stuff out alone. The surgeon explain breast cancer treatment to me, but now confused on what treatment is for trip pos.

Also, did anyone send their path slides for a second opinion?

thanks so much everyone

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Nov 7, 2021 12:07AM 1946taco wrote:

Phelps128 - almost exactly 5 years ago, I stood in your shoes although I didn't know I was TP until after my lumpectomy. Right now really is the hardest. Your treatment plan, including pre or post surgery chemo will depend on your staging. That will also influence the type of chemo you will get. So... try to breathe, as someone said, leave Mr. Google alone, and take it one step at a time. Keep asking questions both here and from your medical team. It's certainly OK to ask for a second opinion. I went to a group that was highly respected by primary who had treated me for years and didn't get one but if you are uncomfortable or don't get your questions answered, by all means, talk to a second physician. Also, try to take someone with you to your medical appointments. It's OK for you or your helper to bring or take notes.

I'm glad you found This is a safe place for your joys and your sorrows. As you get a treatment plan, there will be other threads you might visit. We can help you find them too. As you get your diagnosis, post that on your profile and make each entry "public."

Eat what tastes good to you but try to eat and stay hydrated. And a walk is always a good idea. Don't look back! "Could have, should have, would have" won't make a difference today. As you move forward, you can consider new health habits but don't beat yourself up. Just take care yourself and your son for today.

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Nov 7, 2021 12:36AM phelps128 wrote:

Thank you for replying...means a lot. I am going for lymph node biopsy this week. Praying it’s clear.

I will keep everyone posted. Well wishes for health and happiness to all!!!!

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Nov 7, 2021 07:42AM yesiamadragon wrote:

Phelps: Neoadjuvant chemo (chemo before surgery) is recommended for those of us who are triple positive and have tumors above 2 cm (some say 1 cm) .

As far as what to eat: I am a near life-long vegetarian and teetotaler, and have always exercised and meditated. My favorite foods are all on the "foods to eat to prevent cancer" list. And I still got breast cancer. During chemo pretty much all I could eat during the worst of it was Coconut Bliss fudgecicles. Eat what you can to get through this. Cancer cells are metabolically very active (why they light up on PET scans), so they need a lot of fuel, but starving yourself won't fight them -- they will grab what they can at the expense of your healthy cells. So yes, added sugars in excess aren't healthy, but they don't "feed" cancer particularly.

Exercise helps in so many ways. Again, during the worst of my chemo (I had more side effects than most, was sure I would be one of the ones who was able to never miss a day of work but I am a lightweight when it comes to ANY medication, so I should have known better) my watch would remind me to get up every hour and I did laps around the kitchen. But I also made myself go for walks in the woods daily. And I joined a cancer-survivor rowing group after chemo, and did what I could, then started strength training with a lymphedema-prevention weight training group. Do push yourself a little bit to walk every day, but don't beat yourself up when you need rest.

Do you mind saying where you live? There are groups on here for many parts of the world, and it may help you to connect with others local to you. The Nurse Navigator or Social Worker at your cancer center may also be able to connect you with others who are triple positive and further along than you are.

Take one day at a time, as difficult as it is. You can manage even the worst days if you just focus on getting through one day. And the unknowing at the beginning is the hardest!

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Nov 7, 2021 09:26AM 1982m wrote:

Phelps I had my surgery before chemotherapy since my original tumour was thought to be 1.5 cm. Both my surgeon and her intern decided that was the right choice. There are definitely pluses and minuses both ways, but it will be your estimated tumour that guides those recommendations. They found DCIS in my margins so now I’ll get survey after chemo as well. Due to Covid delays they decided to put me into chemo before re-excising.

Don’t be discouraged with the ‘cross talk’ between Her2 & ER+++. Many triple positive cancers respond well. I’m very Er, Pr + as well (91-100%). After I finish chemo I’ll go onto tamoxifen alongside the Herceptin to help target any stray cells all at once. That can help with cross talk.

Good luck on your node biopsy. No matter what the result, they have so SO many treatments for Her2+ and triple positive cancers.

Dx 7/13/2021, IDC/DCIS, Left, <1, Stage IA, Grade 2, ER+/PR+, HER2+, IHC
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Nov 7, 2021 12:42PM - edited Nov 7, 2021 12:49PM by phelps128

Thank you! I had my son 3 years ago on Oct 29th and had complications from the c-section. I had hip issues from early on and it took me over two years to get over it with physical therapy. Life is so ironic. I was just starting feel really good again.

Thank you for all of this information. It is very helpful. I live in Allentown, PA. I believe that I will be treated at Weill Cornell in NYC. Is there a forum that discusses experiences and reviews of treatment at hospitals? It's hard for me to find many reviews on line.

ElaineThere- sorry for the late reply, but so happy that you are almost at your 7 years! I hope it goes fast and you are done with the zoladex!!

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Nov 7, 2021 01:52PM morrigan_2575 wrote:

Dr Google is the worst for newly diagnosed, it will drive you insane with worry. Take a deep breath and step away from the search 😁😁😁😁

Best of luck!

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+, Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole breast: Breast, Lymph nodes, Chest wall
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Nov 7, 2021 02:03PM specialk wrote:

phelps - Weill Cornell has a good reputation and is an NCI center - I would think you are in good hands. I used the search function on the left of the screen and typed in Weill Cornell nyc and got this page of hits from within this site, including your post from above. There are some specific docs and procedures mentioned. If the members who made those posts are still active you can always send them a private message and ask specifics.

On the subject of Her2+ and ER+ all of us on this thread are in this boat - my ER+ percentage was 96, I was already post-menopausal so went immediately to an aromatase inhibitor, initially letrozole, then arimidex, then back to letrozole - switching to stay on top of shifting side effects. I stayed on these meds for 7.5 years and am now at 11 years post diagnosis. There is a short game and long game in being a triple positive - the initial recurrence threat seems more driven by the Her2+ aspect, longer term recurrence threat coming from the ER+ part. The good news is that the meds currently in use have demonstrated effectiveness for most early stage patients.

Chemotherapy before or after surgery is generally determined by clinical impressions of stage. The tumor size cutoff is usually 2cm and this was driven by the advent of Perjeta in 2013, although positive nodes with a smaller tumor, or other high risk factors meant possible neoadjuvent use as well. Perjeta was initially only used neoadjuvently, in the presence of a taxane, and only for tumors over 2cm. Prior to 2013 most of us had surgery, then chemo and targeted therapy, but now warranted neoadjuvent use is standard of care.

Wishing you the best - this thread is full of info and helpful folks. Hang in there, this early part is tough sledding, but you will get through it.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Nov 8, 2021 12:58AM phelps128 wrote:

Thank you all so much for replying. It means a lot to me! All the info is very helpful

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