Hi everyone.. here for some support.

[Nat1990]

I’m here on behalf of my mum she got diagnosed with er+ met breast cancer last october had spread to a small spot in spine. Undergone left Masectomy and lymth nose clearance last November. Had ct and bone scans in the January no further spread. Started her on letrozole and Ibrance then had 15 rads to chest wall now back on letrozole and Ibrance. Scans to be done again this month. What I don’t understand is that her pathology test showed er+ positive and some eveidence of her2+ I’m sure her oncologist said there was some eveidence but not enough to treat? I don’t understand if she is her+ then why not treat for that also! I’m so confused and constantly worrying all the time. I’m so scared of losing her.. I pray that her next scans are good o don’t think I can cope with anymore bad news xxx

[Howzit]

Hi Nat

My mum also has secondary breast cancer so I know how scary it all is. Has your mum been assigned a secondary breast care specialist? We have a lovely nurse called Wendy who we can contact with any questions. We can also book a one to one with her for an hour if needed. Do check if they offer that support where you live as they can answers some questions that you may have. Sending love & support Emma x

[Nat1990 in reply to Howzit]

Thanks for your reply.. yes we have a breast cancer nurse but to be honest she didn’t seem to have the time I’m not sure if it is because she is roo busy with other people but just doesn’t seem to have the time we never hear from her if I need something or need to ask for something I always get referred to someone else.. I’m sure my mums oncologist knows what he’s doing it’s jusy my mind runs away from me.. if you don’t mind me asking what type of met breast cancer does your mum have? For how long and what type? Xxx

[Howzit]

That’s a real shame, I wonder if you can request another nurse.

My mum was diagnosed last Oct but she had been poorly for about a year prior to that..... she has ER8 Pro & HER2 negative secondary breast cancer which has spread to bones, lungs, liver, brain & dura. Currently on ibrance & letrozole.

Hope your mum is feeling ok. We find everyday is slightly different. Some good & some bad xx

[Nat1990 in reply to Howzit]

Thank you so much xxxx

[Ibelong]

Hello. I am metastatic like your Mum. It’s not easy and very scary. I am ER, estrogen positive, PR, progesterone negative and unlike your Mum I am Human Epidural Growth factor 2, Her2 negative.

My understanding is that the Her2 protein helps the cancer grow. In Her2 positive breast cancer there is a gene that is mutated. The mutation causes an over production of Her2 thus causing the cancer cells to grow.

I read information from the Mayo Clinic that says Her2 positive breast cancer can be positively treated with hormone therapy. The hormone therapy that has been prescribed to your Mum is the Letrozole. I was on Letrozole with Ibrance for a period of time. Even though Letrozole is primarily used for post menopausal Her2 positive women and not Her2 negative like myself.

With knowing the information I provided I would ask her health care team: If the drugs she is taking will help with the Her positive? If so which one and how it will help?

According to the Mayo Clinic Her2 positive can be successfully treated. Here are their treatment choices you might ask about:

Ado-trastuzumab emtansine (Kadcyla)

Lapatinib (Tykerb)

Neratinib (Nerlynx)

Pertuzumab (Perjeta)

Trastuzumab (Herceptin)

A scary fact of metastatic breast cancer is that there may be many treatments to either get to No Evidence of Disease, NED status or stable. To be stable means there is no new growth of existing tumors and or no new tumors showing up on scans. Your Mum can achieve NED or become stable for a period of time. This period of time can be very long.

My last question I would ask is IF the cancer progresses and stops responding to current treatment what treatment would be next? This is a question I have had to ask several times but it helped prepare me especially when I followed up with asking about it’s side effects.

I hope this helped a bit. All the best to your family.

[Nat1990 in reply to Ibelong]

Thank you so much xxxx

[SeattleMom]

God bless you, Nat, for researching on behalf of your mom. Like one of the other ladies who responded, I would ask oncologist directly to explain which meds are specifically targeting her individual markers. It should be pretty straightforward and, if you are not satisfied with the answer, I would definitely contact the national cancer institute in UK for more information. I did find the following info from the American Cancer Society website. It may provide you with treatments to ask about:

Targeted therapy for HER2-positive breast cancer

For about 1 in 5 women with breast cancer, the cancer cells have too much of a growth-promoting protein known as HER2/neu (or just HER2) on their surface. These cancers, known as HER2-positive breast cancers, tend to grow and spread more aggressively. A number of drugs have been developed that target this protein:

Trastuzumab (Herceptin): This is a monoclonal antibody, which is a man-made version of a very specific immune system protein. It is often given along with chemo, but it might also be used alone (especially if chemo alone has already been tried). Trastuzumab can be used to treat both early- and late-stage breast cancer. When started before or after surgery to treat early breast cancer, this drug is usually given for a total of 6 months to a year. For advanced breast cancer, treatment is often given for as long as the drug is helpful. This drug is given into a vein (IV) and is infused over 30-90 minutes. Another type of trastuzumab called trastuzumab and hyaluronidase-oysk injection (Herceptin Hylecta) is also available. It is given as a subcutaneous (under the skin) shot that takes about 2 to 5 minutes to inject.

Pertuzumab (Perjeta): This monoclonal antibody can be given with trastuzumab and chemo, either before surgery to treat early-stage breast cancer, or to treat advanced breast cancer. This drug is given into a vein (IV).

Ado-trastuzumab emtansine (Kadcyla, also known as TDM-1): This is a monoclonal antibody attached to a chemotherapy drug. It is used by itself to treat advanced breast cancer in women who have already been treated with trastuzumab and chemo. This drug is also given in a vein (IV).

Lapatinib (Tykerb): This is a kinase inhibitor. It is a pill taken daily. Lapatinib is used to treat advanced breast cancer, and might be used along with certain chemotherapy drugs, trastuzumab, or hormone therapy drugs.

Neratinib (Nerlynx): This is another kinase inhibitor. It is a pill that is taken daily. Neratinib is used to treat early-stage breast cancer after a woman has completed one year of trastuzumab and is usually given for one year. Some clinical trials show that it may also be effective in advanced breast cancer, as well.

Again, bless you, Nat, as you help your mom out. Sometimes, for the patient, the number of questions can be so overwhelming and paralyzing. You can't imagine how much your help means! XO Linda in Seattle

[Nat1990 in reply to SeattleMom]

Thank you so much xxxx

[mariootsi]

You are a beautiful support for your mum.

There are just so many questions. Make a list so when you see her onc you can get clarification.

Bless you! You are a good daughter. She is lucky to have you.

I pray you and your mum have peace and strenghth during this very difficult time!

Love,

Marianne

[Nat1990 in reply to mariootsi]

Thank you so much xxxx

[RLN-overcomer]

Good morning : I hope you can find a caregivers support group to attend. Can you arrange a group of loved ones that can support you more, which in turn will help you to be strong for your mom. I don't know what the future holds, but I am praying for you, and your mom XoXoXo Amen

[Nat1990 in reply to RLN-overcomer]

Thank you so much xxxx

[RLN-overcomer in reply to Nat1990]

I just said another prayer for your mom to have full healing, and for you to have peace, and comfort Amen XoXoXoX.