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Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Jan 17, 2019 1:39 pm

Hello, I am a 53 year old cancer patient diagnosed with HER2 positive breast cancer on the right side. Due to the size of the tumor (over 5 cm), my treatment started with neo adjuvant chemo in October 2018 (last cycle will be on January 21st), and will follow with pending mastectomy, radiation and ongoing one-year Herceptin treatment. 

After 5 cycles, tumor has been contained and hasn't shrunk significantly (4 cm). The original plan was for a right mastectomy and sentinel lymph node biopsy after the chemo,  but now  I am considering doing bilateral mastectomy.

I would appreciate getting some feedback of any members that got HER2 positive breast cancer in one side and opted to have the prophylactic / preventative bilateral mastectomy and their recovery experience from surgery.

Thank you.


 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by ashcon on Jan 17, 2019 3:50 pm

Hi Tesachi‍ 

Welcome to the site and thanks for sharing your story and journey so far.

I am not HER2+, but our stories are very similar.  I was diagnosed at age 53 as well (in Jul 2017) but with triple negative breast cancer. 
Originally I had a lumpectomy and sentinel node biopsy, followed by chemo.  Then before I was to start radiation, more nodes were discovered on the affected side, so I had the surgeon give me a prophylactic bilateral mastectomy while he was in there removing the additional nodes.

In a way I was grateful for the 3 months of chemo as it allowed me to do a lot more research on breast cancer, and it helped me make the decision for prophylactic surgery as the best way to give me the best shot at preventing recurrence or new occurence of breast cancer.

Both my surgeon and my oncologist told me that they were more concerned with the cancer metastasizing than recurring in the breast, so questioned why I would opt for a bilateral mastectomy.
In my case, I didn't want another tumour to start and be missed again in my breast, as is what happened with the original tumour.  

As for recovery?  The removal of breast tissue is a relatively quick recovery (6 weeks or so, I think).  The more lengthy aspects of my recovery have been because of two things:
1) the 25 rounds of radiation after my bilateral mastectomy. It took about 3 months for skin to recover and for energy to return
2) The removal of 25 lymph nodes on right side. I am still numb and stiff in right arm and shoulder, and have mild lymphedema which I contain by wearing compression sleeves.

I've heard many doctors say that your recovery time should be equal to the time you were in active treatment (e.g. 1 year of treatment, 1 year of recovery)
I was lucky and took the time off work to focus on recovery, and I maintained a healthy diet and exercise regime all through my treatment.

Other than that, I am pretty much back to normal energy levels and mental stamina eight months after my last radiation treatment. 
I am enjoying my sleek new "me" (I wasn't that big to begin with!) and am enjoying the money saved on bras! 

What are your thoughts on reconstruction if you go this route?
I decided not to do reconstruction as I knew that would require additional surgery(ies) and I didn't want to risk complications, plus I wanted to get back to 'living my life' as soon as possible.
Though I hear that many women have no concerns or complications with reconstruction.

Many other ladies may chime in on this conversation to offer their wisdom.  Don't hesitate to ask more questions as you think of them.

When do you have to make the decision on your surgery?

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Jan 17, 2019 4:55 pm

Hi ashcon‍ 

Thank you for sharing your story and giving me some feedback about your breast surgeries and radiation treatment experience. I'm going to see both oncologist breast surgeon and plastic surgeon end of this month to plan definite surgery and discuss my options for delayed breast reconstruction. In my case, as I am going to have radiation treatment after breast surgery and  continue with Herceptin treatment for a year, I feel delayed breast reconstruction is the best option for me as I can have it later on down the road, no rush.

I can relate to the feeling of not wanting the risk of another tumour to start and be missed again in my other breast, as is what happened with the original tumour. Prior to the diagnosis, I was in good health and there was no history of breast cancer in my family.  Furthermore, through my provincial breast screening program there were no signs of breast cancer in the mammograms results back in 2016 and 2017 that my next mammogram would be scheduled until 2019.  Unexpectedly, I felt a shooting pain and a lump on my right breast back in August 2018 that  my physician sent me for an ultrasound and mammogram and to make the story short required further medical tests that confirmed it was HER2 positive breast cancer.

It's great that you are back to normal energy levels and mental stamina after your last radiation treatment and enjoying your sleek new "you".  Thumbs up!  :D










 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Lianne_adminCCS on Jan 17, 2019 7:17 pm

Hi Tesachi‍ 

Welcome.
I thought I would pop in and share another thread on HER2+ here  that Dielle‍  posted recently.

I am sure you will hear from others on this topic as well

Lianne
 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Jan 18, 2019 12:52 am

Hi Lianne_adminCCS

Thank you for popping by and sharing HER2 positive-related forum thread that will be very helpful in my journey.

Teresa

 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Naan on Jan 21, 2019 8:07 pm

Hi Tesachi, I was diagnosed with breast cancer in April of 18, I had a bilateral mastectomy with immediate reconstruction (DIEP)  in June and found to be ER/PR- and Her2 +. In August I  began 6 rounds of chemo and herceptin began on the 4th chemo. I to will be on it for a year. I am not doing radiation. I chose the bilateral so I wouldn't have to go through this again. Chemo treatments were not horrible but exhausting.Herceptin is keeping my energy levels a bit lower as it is hard on the heart. Keep positive and do what's best for you. We are all here to support you on this journey. Love and prayers!

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Jan 24, 2019 4:31 am

Hi Naan‍ 
Thank you for sharing your story and giving me some feedback about your breast surgeries, chemo and ongoing Herceptin treatment.  I appreciate your words of encouragement. This online community is a great source of emotional support for anyone affected by cancer because we can share our experiences; we are not alone in this journey.
Sending you back love and prayers!
 
Teresa

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Janegj on Jan 25, 2019 6:40 am

Hi there, and welcome to the group.
I too am ER negative, HER2 positive. I had a mastectomy of my left breast, then 3 months of A/C chemo and 12 weeks of Taxol/Herceptin and will have Herceptin for another year. I am currently doing radiation. Ask your Dr. for a BRCA test, this will indicate whether your case is genetic. I just had the text done last week and am waiting for the results. If positive my onc. says he would recommend another mastectomy for my right breast and having my ovaries removed.
Good luck to you.
Jane
Jane

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Dtara on Jan 26, 2019 4:23 pm

Hello, Tesachi‍ 

I too was diagnosed with HER2 Positive in my right breast and then in my left breast. The tumor in my right breast was 9 cm when diagnosed and was also ER/PR positive. A month later, an MRI saw a shadow in my left breast. A core biopsy was done on my left and revealed a 2 cm tumor. This one was HER2 positive but ER/PR negative. I'm in the middle of chemo and after I will have surgery and then radiation. I have decided  to have a bilateral mastectomy. I've been scheduled for BRCA testing because of the family history of breast cancer on my mothers side of the family (2 aunts deceased due to breast cancer). I consider myself very lucky and grateful to have a very supportive family and friends and to live in a time were medical testing and advances have improved the out come for survival, my aunts were not as lucky. I wish you well and hope that your journey will be healthy and quick one.

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Jan 30, 2019 3:51 am

Hi Dtara and Janegj

Sorry for the late reply, I haven't been feeling well  (my physical recovery from my last chemo treatment is taking a bit longer). 
Thank you for sharing your experiences and giving me some feedback about your HER2 positive-related treatments. 

 
As my right breast tumour hasn’t shrunk significantly and my left breast has ADH (Atypical ductal hyperplasia), my oncologist breast surgeon supported my decision to have the prophylactic mastectomy option.  Once I get the surgeries dates confirmed from my doctor, I will have bilateral mastectomy and bilateral sentinel lymph node biopsy (and if needed, depending  of pathology report results possible right axillary node dissection).
 
In the meantime, my next project is to get ready for these surgeries:
     I got my temporary breast prosthesis (post-op insert puffs made of light weight foam). They are available free-of-charge, upon request, by speaking with an Information Specialist at the Canadian Cancer Society  1-888-939-3333.
     I attended the Breast Cancer surgery info session at my hospital and will be reading the information material in more detail to prep myself for these procedures.
 
To #Dtara, #Janegj and anyone from these wonderful supportive community, wishing you well in your journey, keep safe and stay positive smiley

Teresa

 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Lauren55 on Feb 12, 2019 11:54 am

Tesachi‍ , Dtara‍ , Janegj‍   I too am Her+ er/pr-.  I find mist of the discussions about HER2+ are by people that are also er/pr+. Meaning they go on a drug therapy for differing lengths of time after treatment. 

I don't know about you but I felt like oh no more treatment? Are you sure it is gone?  My oncologist never discussed a change from the initial treatment schedule when he found out mine was er/pr -.  Then he left for a new job.  I meet my new oncologist later this month.  Did your oncologists say anything?  

I had 8 rounds of chemo and 18 rounds of Herceptin, bilateral masectomy followed by radiation.  

 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Janegj on Feb 12, 2019 12:24 pm

Hi Lauren,

I had a mastectomy and then 6 rounds of A/C chemo and then 12 weekly rounds of Taxol/Herceptin. I am now doing Herceptin every 3 weeks until November. In the meantime I am also in the middle of 25 rounds of radiation.
My oncologist basically told me that we have to pray that this will work as there are no other options after this as hormone treatment is not effective for us.
I also had a BRCA test done and am awaiting the results. Depending of what it says I will also be having another mastectomy and my ovaries removed.
I changed my diet radically and drink a lot of green juices that we make at home using a cold press juicer, and eat mostly vegan and organic but I will occasionally have a piece of fish or an egg.
Good luck to you, and if you have anymore questions just holler!
 
Jane

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Feb 12, 2019 1:50 pm

Hi Lauren55

You mentioned that you had 8 rounds of chemo and 18 rounds of Herceptin, bilateral mastectomy followed by radiation treatments. I would suggest that when you meet your new oncologist, make a summary or recap of what you have been through with all these treatments and prepare a list of questions to address your concerns, and what would be his opinion on the status of your health after all the treatments you completed. 

I am scheduled for both bilateral mastectomy and sentinel node biopsy beginning of March. One of the oncologist doctors advised me that depending of the pathology report results of these surgeries, they may put me on hormonal drug therapy Iwhich was not part of the initial treatment, but considering that I am now menopausal, hormonal changes can happen in my body that can affect the initial treatment), My oncology breast surgeon advised me that if sentinel node biopsy results finds any cancerous nodes, then I have to undergo axillary node dissection.

Please keep us updated how the appointment went with your new oncologist.  Sending positive vibes your way.
😊

Sincerely,

Tesachi - Teresa

















 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Janegj on Feb 23, 2019 1:03 pm

Hi there,

May I suggest that, before deciding on a bilateral mastectomy you get tested for BRCA1 & 2? My oncologist insisted that I do it and I just got my results two days ago. Both tests were negative for BRCA, so I am extremely thankful for that. My oncologist had told me that, if the tests returned as positive he would advise having my other breast removed and my ovaries.
When I first found my 'lump,' I was adamant that I wanted both breasts removed but now, I am not convinced that is the right road for me.
Hope that this might be helpful.
Jane

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Minus2 on Feb 24, 2019 6:56 am

Hi Tesachi‍, 
My breast cancer was ER+, PR+ and HER2-, so a little different than yours, but I did have bilateral mastectomies because there was DCIS in both breasts plus a 2.0 cm IDC tumour on the right.  The DCIS in the left breast was very small.  Had the timing been any different and the tumour had been discovered sooner, before the DCIS in the left breast was detectable, I would have been referred only for a mastectomy of the right breast.  And that would have meant a second diagnosis and procedure down the road because I did develop cancer in the left breast, making me a bit of a statistical exception.  We all have to make decisions we can live with - not just physically, but also emotionally - and I am terrible at waiting for the next event.  Anxiety is always anticipatory and I'm not good at managing that where cancer is concerned.  So, even if cancer had only been discovered in one breast, I think I would have advocated for both breasts to be removed just for peace of mind.
The other reason I am posting is that Janegj‍ wrote suggesting you consider genetic testing for the BRCA1 and BRCA2 genes.  Truthfully, there are so many genes that are being investigated as links to hereditary breast cancer, some Dr.'s are advocating for every breast cancer patient to undergo genetic testing.  I successfully advocated for genetic testing in the autumn of 2017 and they did discover a mutation on my ATM gene.  They are not sure exactly what it means yet, so it is considered to be a Variance of Unknown Significance (VUS), and I have been advised to contact my genetic counsellor every couple of years to see what new information is available. I have used this information to advocate for early screening of the cancers that may be linked to mutations on this gene.  If you do pursue genetic testing, I would recommend you request a 30 gene panel in order to give you a  more comprehensive result.
Wishing you well as you collect and process all the new information coming your way.  You will manage this, better than you expect. 😊

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Feb 24, 2019 2:01 pm

Hi Minus2
Thank you for sharing your story and giving me some feedback about your bilateral mastectomy and genetic testing experience.   My surgeon's original advice was to do the mastectomy on the right breast that has the tumour, and I had to insist in having prophylactic bilateral mastectomy as a preventative measure;  my surgeon finally supported my decision  because of the atypical ductal hyperplasia found in my left breast (mass with cells with irregular shapes).  My surgery is booked for March 7th.
Keep well and please feel free to give any comments or feedback, they are appreciated.

Sincerely,

Tesachi - Teresa


 

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by blessedtolive on Feb 25, 2019 1:29 pm

I was diagnosed with HER2+ and estrogen+ breast cancer (stage 2) in June 2015.  My breast surgeon did not want to do a bilateral mastectomy because she said it would extend the healing time and delay chemo.  I had one side removed immediately, and then after chemo and a year of Herceptin I had the other side removed when I had reconstruction.  One side had immediate reconstruction and the side I had the cancer in had delayed (obviously).  The side that had immediate reconstruction looks better, but I'm happy with both sides.  Looking back, I would do the same thing as I wouldn't want to delay treatment by having both done at once.  I was tested for 26 different gene mutations including the BRCA1 & 2.  I was negative for all of them, but I knew I would worry about every bump (I had fiber cysts in both breasts) so I chose to have the other breast removed.
You know yourself, good for you for insisting.

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by blessedtolive on Feb 25, 2019 1:31 pm

I should have mentioned that with clothes on both sides look the same.  The scarring is less on the side with immediate reconstruction.

Re: Diagnosed with HER2 positive breast cancer (ER/PR Negative)

Posted by Tesachi on Feb 25, 2019 2:36 pm

Hi blessedtolive
Thank you for sharing your story, giving me some feedback about your mastectomy and breast reconstruction separate surgeries and genetic testing experience. I am glad to know that your genetic tests were all negative and that you are happy with the results of your breast reconstruction surgeries.
Due to how my HER2+ positive tumour on my right breast was rapidly growing, I had chemotherapy first. Although I indicated to both oncologist breast and plastic surgeons that I prefer to have delayed bilateral breast reconstruction done after I finish radiation (pending) and Herceptin immunotherapy (ongoing till end of next year), I may change my mind and go flat, let see how it goes. For now, looking forward to have my bilateral mastectomy/lymph node biopsies done to keep the ball rolling on my treatment.
Keep well and please feel free to give any comments or feedback, they are appreciated.

Sincerely,

Tesachi - Teresa




 

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