Triple-negative vs PR-positive

mandarisha

Hi everyone.

I have a confusing diagnosis and thus not sure about the suggested treatment.

I had a mastectomy first, was suggested by a surgeon to take it out immediately due to the highest grade. Unfortunately, I was advised for an immediate reconstruction using TRAM flap, which is an absolut horror and I would not recommend it to anyone ever.

ER was tested twice, def negative. HER2 negative with IHC. PR-positive 35% and Allred score 6. No nodes but Lymphovascular and Perineural invasion present. All margins clear.

My oncologist says PR is too low, we have to treat it like Triple-Negative and hit it hard. He suggested AC for 4 to 6 months following by Docetaxel+Cytoxan for 3 months.

I am young, slim, with beautiful hair which will be lost, have a weak heart, gastritis, some degenerative changes in spine (PET scan). When I read all the side-effects, I only see how it will ruin me.

Is the suggested treatment correct? How can I know? Will my flap tissue in the reconstructed breast die off from chemo? It's been a month after the surgery.

Many thanks

sylviaexmouthuk

Hello Mandarisha,

I have just read your post with great interest and think that if I were you and you are having doubts about what you have been told, I would get a second opinion. It would not hurt to know what another consultant thinks.

We are not doctors or experts on the threads and are not supposed to give advice. We can speak only from our own experiences.

The chemotherapy drugs that you have mentioned are standard ones, whether you are triple negative, or a variation of receptors.

I was diagnosed with triple negative over 15 years ago now and had epirubicin (Ellence), cyclophosphamide (Cytoxan) and docetaxel (Taxotere). I had them before surgery (mastectomy) and had three months of the first two combined and then three months of the other drug. This is abbreviated to EC plus T.

Another standard combination is doxorubicin (Adriamycin), cyclophosphamide (Cytoxan) and then paclitaxel (Taxol). This is abbreviated to AC plus T.

I do wish you all the very best and do not be afraid. You can get through chemotherapy.

You may wish to post on Calling all TNs or you can post on Calling all triple negative patients in the UK, which has members from many countries. I am sure you can get some answers, support and reassurance.

We all fear hair loss but it does grow back and there are ways of preventing hair loss through ice caps.

Good luck.

Best wishes.

Sylvia

mandarisha

Dear Sylvia,

Thank you so much for your reply. that is really helpful!

Kind regards

santabarbarian

My concern for my heart led my MO to suggest Carboplatin/Taxotere as a chemo. I said "I am very physically active; I do not want you to save my life but then have heart damage such that I am not be able to participate in the things I love about being alive!"

I also did integrative practices to help my body withstand chemo. My story is on page 6 of "member's stories" on TNBC board. Carbo works well on high grade TNBC but not suer how your slight hormone positivity might affect that.

Be the squeaky wheel about your concerns, and hear their counsel, keep asking questions, until you feel confident that you are on the right track. Chemo and rads are no fun, though the silver lining moments are frequent. You can do it! Be aggressive - TNBC can be beat!

mightlybird01

In addition to what others have said this sentence does not sound right:

"He suggested AC for 4 to 6 months following by Docetaxel+Cytoxan for 3 months."

The "C" part in the AC means Cytoxan. I have never heard anyone taking AC AND Docotaxel+Cytoxan afterwards. You would take the Cytoxan twice. Either you misunderstood something or this would not be a standard sort of treatment. I would check back with the oncologist.

AC plus T (T stands for Taxol) is very common for TNBC, and Carboplatin/Taxotere seems also rather common.

moth

The thing is, we never really know 100% whether the treatment is right - all we can look at is evidence based protocols and having trust in our team. If you're not sure, definitely get a second opinion.

IMO you only get one chance to hit it hard and fast. Remember the point of chemo is to reduce risk of metastatic recurrence, and that a metastatic recurrence is not curable. So everything you do now is to tilt the scale in your favour of long term survival.

I do agree the chemo doesn't sound right as repeating cytoxan (cyclophosphamide) doesn't sound like a usual protocol. Carboplatin might have been the second "C" drug . But in this early stage setting I'm not sure about doing both. Are you sure it wasn't AC+T OR docetaxel + carboplatin?

Oh and chemo can slow tissue healing but it won't kill your reconstruction. If the recon is healthy and healing, it will just keep on continuing to heal and repair. Eating as healthy as possible will support your body to grow new tissue & repair.

mandarisha

Thank you everyone for bringing it to me. God...You are amazing here and so helpful!

Yes, definitely misunderstood. Now have a list of new questions!!! Looking on doc's scribble - he is looking into choosing from:

AC vs EC vs TC (Taxotere+Cytoxan) for 4 months depending on my health tests. 2nd treatment T (but Taxol) for 3 months.

I'm having a cardio check up today but still probably will not go for AC as already have heart issues. Oncologist on Thursday, hope for the best.

Thank you

MinusTwo

As posted above - AC is Adriamycin and Cytoxan. TC is usually Taxotere and Carboplatin. Please be sure to confirm the correct "C" chemo.

mandarisha

Hello my dear ladies.

So all the blood work and heart scan are normal and we started with the first regime:

AC (Adriamycin+Cytoxan) 4 circles every 3rd week.

Later we'll continue with T, but it's still open Taxol or Taxotere.

Thank you so much for all the information, it helped a lot in the discussions with doc.

All the best to all of you!!!

MinusTwo

Good luck. We'll keep you in our thoughts.

mandarisha

Hi again,

was anybody ever advised to continue with hormonal therapy after chemo "just in case" and "to reduce risk" due to the fact that a lot of initial triple-negative has a reccurance/new cancer with hormone positive?

I'm finishing my chemo next week (AC (Adriamycin+Cytoxan) 4 rounds every 3rd week, then Taxol 8 rounds weekly). I'm not happy about Tamoxifen and it side effects as I'm already hit by chemo pretty hard. Now 5-10 years on pills just in case?

First they said "PR is too low, we have to treat it like triple-negative". Now they say "PR 35% can behave like hormonal type, we have to reduce the risk of a hormonal cancer later on".... confusing and sad....