Hormone Positive followed by Herceptin positive breast cancer.

jayjen

My sister had hormone positive breast cancer, had lumpectomy and radiation treatment. Nine years later she has been diagnosed with Herceptin positive breast cancer in the other breast, which is very aggressive and she will be on weekly chemo for at least twelve weeks, possibly to be followed with a double mastectomy. Is this common? Does anyone know of this?
I also have had hormone positive breast cancer, with mastectomy, chemotherapy and radiation. A very aggressive cancer. Now I am worried about my sister's diagnosis and my chances of going down this same path. I am seeing my breast surgeon next week to ask her but thought I would ask also on this very helpful forum. Thanks.

au0rei

I am so sorry to read this. I was only diagnosed last Dec so I am still so early on my journey. As much as this is such awful news, we must stay positive. My cancer was also aggressive hormone negative and her2+ but it is assuring to know we have Herceptin. My radio oncologist told me before Herceptin was available, Her2+ cancer is trouble. It's good she is in good hands and get onto treatment.  I have planned to have right mastectomy next year once I finished my Herceptin treatment next Jan and fully recovered.

I do know of a friend's college who had cancer in one breast. She had treatments. I think she wanted to keep the other breast. And then she had cancer in the other breast. And then somehow in the brain. I do not know the full story as I do not know her personally and my friend does not know in detail. I am not sure how things turned out that bad for her and what her medical team was doing in their follow up. Sadly she passed away recently. Please I do not want to scare you but it's in reply to your question. Her passing affected me a lot even though I did not know her. Her sister has also passed away from breast cancer. So far only the eldest sister is fine. She might have BC running in her family.

My surgeon and radio oncologist says nothing is guaranteed but double mastectomy greatly reduce the chance by about 99%. I am definitely heading down that path to double mastectomy.

Wishing you and your sister all the very best. xxx

Jane221

Hi @jayjen, sorry to hear that your sister has been diagnosed for a second time, it's so unfair, and I can understand your own worries about facing the same situation down the track but hopefully you will be alright. 

I was diagnosed with both hormone positive and HER2 positive breast cancer in 2012 - I had 3 tumours, 2 invasive lobular that were hormone positive and a smaller but aggressive invasive ductal tumour that was HER2+. I had a mastectomy, chemo (6 cycles) and Herceptin (12 months), radiation and am now on hormone tablets. All is looking good (fingers crossed) as I head down the 5yr clear path.

Thankfully HER2 tumours can generally be really successfully treated with Herceptin, which is offered alongside chemo and although the treatment goes for 12 months it is an easier regime than chemo. Having the chemo before surgery can be a really good way to see how well the treatment is working as they'll be able to track any reduction in the tumour size. 

It's hard to know whether any of us will face a recurrence so your breast surgeon is the best one to talk to about your particular situation as we are all so different on that front. Wishing both you and your sister all the best as you face this next challenge. Jane xx

Glemmis

Hi @jayjen, sorry to hear about your sister. My radiation oncologist told me our breasts are separate entities but because we have had breast cancer once we are at higher risk for other breast than the general population and the cancer can be a completely different one so it is not unusual for your sister to have an entirely different cancer & I am sure they have worked out the best plan for her. 

jayjen

Thanks so much for your responses. This site is very encouraging and gives us hope. It is always good to know that someone else is on the same trip with this wretched cancer. I will post again after I have seen my breast surgeon. It does show us though that we must be conscious to keep getting the medical tests available as well as self examination. In my case my cancer was large, 8cm x 2cm, but softish so I couldn't feel it. It grew between mammograms as did my sister's. 
Thanks again for your responses. Very grateful.

Afraser

Hi there good advice from everyone. My tumour wasn't HER2 positive but one lymph node was, so treated as if all was including Herceptin and hormonal therapy. Getting close to the 5 year mark and well, so think positive! Best wishes.

melclarity

Hey! @jayjen I'm sorry to hear of your sister and her recurrence. I've been on this roller coaster 6yrs now and Ive had a recurrence at the 4yr mark, but it was in the same spot in the same breast. I was treated with chemo in 2015 after major lumpectomy for the 2nd time, clear nodes and only ER+ I had the Gene test and it was negative, it helped decide the next step though. I had a left breast mastectomy 14 months post chemo and diep flap reconstruction. The Geneticists said this was their recommendation based on the history and diagnosis. They along with all my Specialists did say too though...that the odds of me getting anything in the other breast wasnt that much higher at all, my chances are as much as someone getting it the first time. Hang in there. Hugs Melinda xo

Nadi

Hi Jayjen I had Grade 3 HER2+ with high proliferation. Had lumpectomy, chemo radiation and 12 months of Herceptin. At the start I couldn't believe i would be having treatment for a year. I finally finished the Herceptin last Nov. It went much quicker than I thought it would. It must be difficult for you after what happened to your sister. But that may not happen to you. Wishing all the best for you. Nadine

socoda

Hi @jayjen, sending you a big hug. So sorry to hear about both you and your sisters diagnoses. But crossing fingers for you that you don't follow the same path. Very wise to be seeing your surgeon even if only to put your mind at rest. Xx Cath

jayjen

Well I saw my breast surgeon who was extremely comprehensive as always. No guarantees of course but she ordered a bone scan and a ct head chest pelvis. These I had done this morning and will ring her for results tomorrow. I am sure all is well. Surgeon has also suggested six monthly ultra sounds for myself and my girls (aged 40 and (nearly) 42), Something I pray I haven't passed onto them!!

Will keep posting if anything new develops and once again thanks for the positive and generous feedback. Jayjen

brightspace

Hi jayjen great followup from DR to be proactive is to be extra vigilant esp if already had bc ...mammog dont show the whole picture so  i feel Ct follow up is very  important after a few years of first diagnosis..

primek

Sounds like you have a great team.

KatyJoy

Hi @jayjen, sorry to hear about your sister, I don't know how common this is but it sounds very similar to what happened to my aunt, my only relative who has had breast cancer. She was diagnosed at 60yo with er/pr +Ve breast cancer and had lumpectomy, chemo and radiotherapy, then 10 years later had her2 cancer in other breast, again had lumpectomy, chemo and herceptin. I think this was a big reason why when I got er/pr +Ve breast cancer at 41yo, I decided to have a double mastectomy.