Topic: TRIPLE POSITIVE GROUP

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

Posted on: Jan 31, 2011 05:30AM - edited Dec 10, 2012 06:55AM by TonLee

Posted on: Jan 31, 2011 05:30AM - edited Dec 10, 2012 06:55AM 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."

http://community.breastcancer.org/forum/6/topic/797454



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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May 4, 2022 03:59PM gamzu710 wrote:

Thanks, all! My niece is the first grandchild on both sides so the spoiling is going to be ridiculous. I've become That Person that whips out my phone to show off pictures to everyone and it's only been 5 days.

SpecialK, my line of thinking is similar and is what has kept me from meltdowns so far. Also the fact that I had bloodwork last week and my calcium levels and everything else was fine. I notice it when I'm lying or sitting in certain positions for too long and it fades once I stretch it out and start moving again. I expected pain and stiffness (also noticing in my knees, elbows, neck, etc.) with exemestane; I just want to have a conversation with my MO about what to expect, what she's seen with other women, and how to keep my sanity when facing these particular side effects!

The side that was irradiated is also very tight because I was dumb and didn't keep up with stretches. And I'm just tightly wound in general all the time now; I'm constantly catching myself all tensed up with my shoulders hunched and horrible posture!

Surgery 7/1/2021 Lumpectomy (Right) Hormonal Therapy 8/3/2021 Aromasin (exemestane) Targeted Therapy 10/1/2021 Kanjinti Chemotherapy 10/20/2021 Taxol (paclitaxel), Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 1/30/2022 Whole breast, Radiation boost: Right breast Dx IDC, Right, <1, Stage IA, Grade 2, ER+/PR+, HER2+, IHC
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May 4, 2022 04:32PM specialk wrote:

gamzu - I think it is cute about the phone! We have some good friends who just became first time grandparents over the week-end and they are doing the same thing - although half the time they are just gazing at their phones and not even showing anyone else the photos, lol!

FWIW, I had a lot of joint pain on letrozole and anastrazole over the 7.5 years I was on anti-hormonals. Particularly knee and back if I sat too long, and ankle/foot with those first steps out of bed. I had a minor knee injury - seemed like nothing at the time - that actually ended up requiring a cortisone injection, and the orthopedic surgeon felt it was definitely the meds. Two things I found to be true - for me - the more I moved the less pain I had, and eating an anti-inflammatory diet helped both the joint pain and my lymphedema. A lot of that pain went away when I stopped taking the meds, but not all of it. Contributing factors are that I am 7.5 years older, and had some pre-existing arthritis, degenerative lumbar disks for the last 25 years, a hip injury during letrozole, and knee surgery in college.

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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May 28, 2022 12:15AM fluffqueen01 wrote:

Gamzu I’m chiming in here. I had a lot f joint pain on arimidex. My onc and pcp recommended Cymbalta, off label. It’s an anti-anxiety drug that was showing a lot of pain relief with people. I swear that is a miracle pill. It helped my pain immensely. Found out my SIL takes a pretty hefty dose for her back.

I’m staying in it for the rest of my life. I feel like it helps with arthritis too.


speaking of the rest of my life…I went to my ob/gyn for my two year check up ( first time I got to go 2 years). In the last couple of months I’ve been having some nagging pain on the right side. She does the exam…hits the spot…I have an enlarged right ovary. Pelvic ultrasound next Wednesday. Of course, I’ve been reading and the one consistent thing is ovarian cancer. Cysts are more rare at my age and the other stuff doesn’t fit.

I could use a Valium prescription about now. I can feel the same sort of panic disorder i developed last time creeping in.

I’m hoping that what we thought were gall bladder issues aren’t related to the ovarian issue.

Now a funny story. Last time I posted in January, I think, I was preparing for my gallbladder surgery. We go to the hospital. I meet with the anesthesiologist, the doc pops in, they’ve got me all prepped except for the iv.

Nurse walks in the room and says…ummm, you have covid. WHAT??!!! totally asymptomatic. So home I go. Spent five days holed up in my bedroom. I did develop very minor symptoms. Found a doc to give me the antibodies. Had that done.

So, official gallbladder surgery was late March. Pretty easy recovery. Getting used to diet changes.

Special k-you are absolutely right about what happens with high fat meals.

I’ll catch up with everything on here over the next few days. It’s where I come when I’m most paranoid.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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May 28, 2022 08:35AM elainetherese wrote:

Fluff!

Good to see you again but sorry to hear about your enlarged ovary. My sister has had a lot of problems with her ovaries, but never cancer.

I also had my gallbladder removed, long before Covid. Yep, definitely can't eat any high fat meals. I have banished heavy cream from my pantry.

Hope the enlarged ovary turns out to be a nothing burger.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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May 28, 2022 05:08PM fluffqueen01 wrote:

Elainetherese-I am a massive warrior when suspicious things happen. Living past bc is not my strong suit.

In this case, when I look at all the possibilities, unfortunately for my age the most likely scenario is the bad one. Hoping it’s not but…

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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May 28, 2022 05:08PM fluffqueen01 wrote:

That should be worrie

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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May 28, 2022 10:55PM gamzu710 wrote:

Ugh, fluffqueen, I really hope it's just a cyst. How unfair. Not that anyone ever asked us.

I'm getting over Covid at the moment. Today was day 11. Mostly back to normal except for some sinus drainage and headaches. It did have the effect of making me completely forget about all my exemestane aches and pains!

Surgery 7/1/2021 Lumpectomy (Right) Hormonal Therapy 8/3/2021 Aromasin (exemestane) Targeted Therapy 10/1/2021 Kanjinti Chemotherapy 10/20/2021 Taxol (paclitaxel), Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 1/30/2022 Whole breast, Radiation boost: Right breast Dx IDC, Right, <1, Stage IA, Grade 2, ER+/PR+, HER2+, IHC
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May 31, 2022 09:08PM fluffqueen01 wrote:

Gamzu-good luck on the Covid recovery. I barely had symptoms, however it took right at 2 weeks before I tested negative.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jun 1, 2022 08:33AM specialk wrote:

flufff - I had a total hyst/ooph about 20 years ago due to continuous bleeding and TVUS that showed many large uterine fibroid tumors. I initially went to the gyn because I had enough of the symptoms on the list of ovarian cancer to be concerned. I had a long history of ovarian cysts, including one lemon-sized one that ruptured. That hurts worse than labor. Post-operative pathology revealed a surprise 3cm mass (pre-malignant) in the right ovary, which was either missed by US - consistent with my history of imaging - or it grew to that size in the time since the US. The ooph was elective, so I was very glad I did it despite the surgical menopause. Hoping this is something harmless for you and fixed by surgery.

DH is recovering from Covid, caught at work from exposure to someone who had a sick family but came to work unmasked all week. SMH! What are people thinking? I have been hiding on the opposite side of the house - he had a very symptomatic case and it was actually a scary experience. Super high fever for days. My WBC is very low so even though I am vaxxed and boosted, so was he, we were very careful and I escaped without getting it - It has now been over two weeks since he tested positive. Not a fun experience but it was an excellent reminder of why it has paid for me to be a hermit and mask everywhere I go.

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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Jun 1, 2022 11:40AM jh40 wrote:

Hi Everyone - hoping to introduce myself here and maybe get some perspective.

My backstory: lump found at a routine breast check at my gyno appointment on 4/13. Biopsy results came back 5/2, 1.1cm, triple positive. ER 60%, PR 20%, Her2+++, Grade 2 IDC. BRCA 1 & 2 negative. Negative for the rest of the gene mutations they profiled.

Met with the breast surgeon 5/4 to discuss options. She ordered an MRI. I'm terribly claustrophobic, and travelled 2 hours north to get into a wide-bore machine on 5/17. Results were delayed coming back the following week because they said the radiologist wouldn't read them without prior images. The priors were then delivered to them the same day that I was told this.

MRI images came back to my surgeons office today and she said that they weren't diagnostic due to too much movement. She said if I'm considering breast conserving surgery she'd have to have the images redone. I am not considering that though; just want a mastectomy with no reconstruction. She says in that case she doesn't need the MRI redone, but encouraged me to talk with my oncologist about this as well. She says that this type of cancer is normally treated with neoadjuvent therapy but I'm in a grey area because the tumor is small and surgery can be done first.

My first oncologist appointment is for 6/8. I'd planned to ask about any other available/applicable genetic testing that may inform my decision to get a double mastectomy rather than just a single.

I guess what I'm trying to figure out here is if I actually should get the MRI redone? I figure it wouldn't really make much of a difference as far as the surgery is concerned, but other than knowing what's working, what would be the benefit to getting neoadjuvent treatment before surgery?

Any thoughts to share? I'm feeling pretty desperate for some clarity with this whole thing.

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