HER2+ - Post treatments

[Karina66]

Hi All,

I've finished my treatments for HER2+ breast cancer (Chemo & Double Mastectomy). And am told I just need to visit my oncologist twice a year. However, I've been hearing that some ladies are given post treatment medication as a preventive measure such as Nerlynx. Does anyone have advise on post treatment/preventive steps. Are there certain questions I should be asking? I had chemo of Herceptin & Perjeta for 1 year, clean margins from mastectomy, no lymph nodes affected. Stage 2.

Thank you.

[anrean]

Please talk to your oncologist. I had liver cancer and the surgeon was so sure he got it all that he recommended against the rigors of chemo! Then when I got breast cancer I went through chemo. They were certain I should be taking a preventative drug such as tamoxifen after chemo, and we tried a few but my liver would not tolerate them (chemo was modified too). I got breast cancer again 5 years later. Still not taking a preventative because of liver issues, but wish I was!!!!

[sharon1014]

Hi karina66- I was her2, triple positive and had mastectomy, chemo, and radiation. Also Herceptin and Perjeta and was put on Nerlynx for a year. Follow up with your oncologist. They should tell you all that.!

[Karina66 in reply to sharon1014]

Hi Sharon, I was on Herceptin & Perjeta for a year. My original oncologist passed away after I finished my last infusion of Herceptin & Perjeta and have been bounced to another oncologist that quite honestly not sure if he's even looked at my records. I brought it up again with him, and he still insists I do not need any further treatments - literally he said just "not to eat any soy and to exercise" to me that is a brush off answer and I will be looking for another oncologist.

[daniellebrooks13 in reply to Karina66]

Karina66: please get a 2nd opinion! It's important!

[Vala2021]

hi! I am HER2+ ER+ grade 3. after my lumpectomy, I had chemo/herceptin; I will be doing radiation next with 12 shots (every three weeks)of Herceptin Hylecta and eventually Tamoxifen anywhere from 5-10years. I am taking Herceptin (targeted therapy drug) for HER2+ and is recommended to be on it for a year. Speak with your doctor again about post treatments! good luck

[Karina66 in reply to Vala2021]

Hi - I was on Herceptin and Perjeta for a year, and have heard from others re. Tamoxifen. I did bring it up again with my oncologist - but still being told I need no further treatments. This oncologist is not my doctor I had from the start of my treatments (original oncologist passed away) so I feel like I may need to see a new oncologist. I ask him one more time to explain to me why he thinks I do not need further treatment, if I feel the answer is not enough, I'll go elsewhere to get a 2nd opinion.

[Vala2021 in reply to Karina66]

yes another opinion would be good!

[Olivia25]

For sure talk to your oncologist. Odd that they only recommend bi annual visits. I'm 2 years out and visit my oncologist every 4 months. May I also recommend lymphatic drainage massage. There are numerous benefits but most importantly it helps with healing and potential lymphedema

[Karina66 in reply to Olivia25]

Thank Olivia for the feedback and recommendation. My original oncologist is no longer available and was given a new one within the practice. I don't feel he is putting the attention needed on my case history, so I may look elsewhere. I would like a second opinion.

[Dimsdale18 Partner]

If you were HER2+, standard of care is to be put on Herceptin. the length of time can vary depending on your specific case. If you aren't happy with what you are being told, please get a second opinion.

[Karina66]

I went for a 2nd opinion, and this Oncologist said also I do not need any further treatment, as I had responded so well to the chemo treatment. He did recommend my seeing him every 4 months, so I have booked that with this doctor. I had been on Herceptin and Perjeta for a full year. Thank you all for your support and advise.

[cinderl8t]

Hi Karina,I’m 17 years out and was and am in same boat, except I had Inflammatory Breast Cancer, stage 3B. No medication, just visits to doc with prior blood work along with visits to PCP and others you might see. Everyone is different and every doc is different I have learned in what and when they prescribe things. Some prescribe scans a lot, order certain blood work tests (while others don’t see the data in it), etc. One thing though, and not to scare you, but it is important, but if you have pain in certain areas of your body that feel different to you, the doc will want to know. I was leery to tell because I knew it would be a scan. I ended up having shingles behind my ear and what a mess that was! That was totally unexpected. This eventually led to another diagnoses (unrelated to cancer), but the point is, these little things catch the bigger problems and your doctor is your partner. I also see my surgeon who did my mastectomy once a year. It’s a team approach.