HER2 positive BC with pathologic complete response to chemo!

[browneyes]

Hi everyone!

I was diagnosed with Invasive Ductal Carcinoma, HER2 positive, estrogen positive breast cancer in January 2024. Biopsy on breast lump and lymph nodes all confirm cancer.

Stage 2, high grade 3. My lump was 18 mm and I had 3 lymph nodes involved with the largest two being 29mm and 12mm, with multiple tiny abnormal nodes surrounding the larger ones. I am 53 years old and post-menopausal.

I have completed chemo treatments of 4 biweekly dense dose AC = Doxorubicin (Adriamycin) and Cyclophosphamide and 3 biweekly Paclitaxel (Taxol) plus 5 Trastuzumab (Herceptin) every 3 weeks for 18 cycles. 13 cycles remaining. Should have been 4 Paclitaxel however the last cycle was dropped because of heart side effects that landed me in hospital for a week.

I had a lumpectomy and full lymph node dissection last week and recovering well without issues. Surgeon called me to tell me that my pathology report came back with a pathologic complete response to chemo!

Per the pathology report, my original breast tumor could not be found, it was all normal breast tissue so no margins could be measured and a total of 12 lymph nodes were removed including the 3 large ones that were originally confirmed as cancer. All were clear and normal! There was some scarring on a couple nodes which he thinks might have been from the chemo.

They did find a 24mm area of dcis or pre-cancer, which surgeon is not worried about because he took it all out with a 5 mm margin. As of my surgery date, I am essentially cancer free!

I am so happy and relieved to hear this news, I am jumping for joy! But, although I am happy, I do know that it can still come back with a vengeance as I am HER2 positive, so I still need to be vigilant these next few years.

My oncologist says that I will continue with the Herceptin for the HER2 positive for another 14 cycles and continue with the planned radiation to mop up any loose cancer cells that may be running around undetected, BUT I do NOT need the hormone blockers any longer. The original plan was to go on Arimidex for 5 years as I was also estrogen positive and post menopausal.

He said it was up to me to make the decision to proceed with it or not. I am to let him know what I want to do on the next visit.

This scares me…how the hell do I know if I should or shouldn’t…I can’t even decide what I want for dinner most days!

I do want to throw everything at it for sure, especially if it helps reduce recurrence. So maybe I will just proceed with it, even if I can get a couple years in and not the whole 5 years. Some is better than nothing I suppose.

Anybody else have a complete response to chemo and then had treatment changes? Did anyone not proceed with hormone blockers? How did it turn out?

Is it correct that no margins can be measured if tumor is now normal breast tissue and can’t be found? And if there is no tumor and no cancer, then am I still considered HER2 positive? Do I still treat the HER2?

If lymph nodes are normal and do not show cancer, am I still stage 2 with lymph node involvement? Or because they only found dcis pre-cancer, am I considered stage 0?

If I had a full lymph node dissection (surgeon says he took all nodes from level 1 and 2) then how can I have a total of 12 lymph nodes. Don’t people usually have 30 or 40??? I think it is odd I only had 12. Could the surgeon or the pathologist have missed any?

What is the average timeframe for a recurrence of HER2 positive cancer?

I will be asking both my surgeon and oncologist these same questions on my next appointments however I thought I would ask here as well.

Sending positive vibes to all! Take care!

[swk1981]

Amazing news!

Any rogue cancer cells are still HER2 +ve so yes you should assume everything is still the same for any future treatment.

HER2+ve has the upside of having a 5 year ‘and relax’ point (not entirely for everyone but more likely!) as it’s unlikely to come back after 5 years while HER2-ve can linger much longer.

HER2+ve is more likely to recur in a shorter time frame but also more likely to go completely within 5 years so personally I’d keep treating in that time with Anastrazole (that’s the drug you are referencing I think?). It blocks the conversion of Estrogen by blocking the aromatases needed to do that and works on adipose tissue and adrenal gland produced Estrogen (basically non-gonadal produced Estrogen) thus not feeding any rogue cancer cells. It has been in your nodes so there is a chance of microscopic cells in your body (however small after chemo) so I guess it matters whether you’ll regret it later if something came back! Personally, I’m in for a penny, in for a pound on this treatment at this point and won’t take any chances! You can always try it. If you don’t tolerate it well then you also have Tamoxifen as a back up option too. You have a load of options to try!

I had a full axillary clearance and had only 10 nodes so yes it’s absolutely okay to have had so few according to the three surgeons I’ve asked!

It all sounds super positive and I hate that they give people choices rather than saying “You’re throwing away 5% of prognosis if you don’t do this!!!” My oncologist stacks the odds and tells me all of them and I just take everything I can to prevent recurrence or spread because I’ll regret it if I don’t and the bugger comes back.

I can’t even stand people writing “I want to avoid chemo!” on here because I’d have pooped my pants if they hadn’t offered belts and braces everything to kill this horrible disease. I guess it’s horses for courses xx

[julesjp]

Hi , ive been diagnosed with idc stage 2/3 grade 3 spread to lymph nodes. Ive opted for mastectomy and having full clearance of nodes then chemi. At my pre op last week i was told her2 positive but there still doing surgery first with herceptin alongside chemo after. The nurse told everybody has different amounts of lymph nodes if that helps, good luck with your treatments x

[naughty_boob]

I agree with @swk1981 about the belt and braces approach. I have done everything I was offered to give me the best chance. I’ve just had my 15th Herceptin and on Letrozole for another 4 1/2 years with Zometa infusions every 6 months for the next 2 1/2 years.

Herceptin is a game changer for survival as HER2 can be very aggressive.

I had terrible menopausal side effects with Letrozole and now on Fezolinetant/Vesoa (private prescription) which has stopped nearly all hot flushes, hopefully NHS next January. Also vaginal oestrogen started a week ago.

There is a group/thread for HER2 buddies if you would like to join

HER2+ and need some buddies

Hi naughty boob, It appears that many women are refused reconstruction options due to a lack of hospitals offering this despite guidelines. Many face waiting times of at least two years but some a lot longer with some being refused reconstruction at a later point as you have said. I was diagnosed just before Xmas and my treatment was delayed because of Xmas and new year now I need surgery and I have hit holiday season! I am hoping this government will be more compassionate and not view this …

Take care