ER/PR-, HER2+, GRADE 2

I also had a ER/PR-, HER2+ tumor. I had a bilateral mastectomy due to there also being DCIS in my right breast as well as a strong family history. Mine was also stage 1 but it was grade 3. No nodal involvement for me either.

I was told they always give you chemo if you are HER2+. The herceptin goes for a year. I didn't need the radiation since I had the mastectomy. If you are ER/PR- you can't do the anti-hormonals since they won't help. I did the chemo. In my case it was taxotere and carboplatin. It was rough but it was over pretty quickly. I used the Penguin Cold Caps to save my hair and they worked.

It sounds like so much treatment. I know I felt that was too. They told me with mastectomy alone my chance of recurrence was 30%. After the chemo I will be down to between 10 and 20%. The herceptin lowers it more but they are not sure by how much. It has only recently been used for stage 1 breast cancer so there are no long term studies. They are guessing it reduces the risk greatly since it has been so effective for higher stage breast cancers.

All the treatment is really an insurance policy. I was told you give up a year of your life so you can have the rest of your life.

Good luck!

The beginning is a whirlwind. Overwhelming to say the least. Once you get a gameplan you can conquer it. There is a thread on here that says how much the chemo helps in HER2+. The statistics are amazing. It made me glad I did it.

Good luck!

Yes.. Her2+ means chemo... if you have IDC ( invasive cancer)

What you posted is the right way to go. If you has a Lumpectomy.. or plan to.

If you had a mastectomy or plan too.. you will not need rads , as you did not have node involvement.

I have been around for some time , and I was Her2+ only also. If you wanna ask me anything.. send me a PM ( private message.. by clicking on my name and then.. send private message) I will try to hel you with questions.

XXXOOO

Laura

I have just been diagnosed as well and having a hard time deciding whether to just have one sided mastectomy or include the good side as well. Surgery in one week. Can you tell me how to get the Penguin Cold caps in the US and how much they range?

Thank  you so much to all that share.  I am scared but God will see me through it all.

Hi there, Im new here in the chat room..My sister is diagnos of Invasive Ductal Carcinoma,Nottingma Grade 1, Tumor size 3.0 cm.She got her mastectomy operation last month and now she's in recovery period.The Dr. said she's ER/PR-, Her2+ we are so worried because we dont know what the next step after the chemo and how worst is the cancer is.My sister mentioned that she's on a stage 3 because out of 15 lymp node 13 are postive im trying to understand what it is number is all about but i really can't.Please someone help me to explain i do really appreciate it...

girlie

there is much good information on the site, go to the home page for a directory.  I think many of your questions will be answered,

Your sis should get a good explanation when the pathology report if fully completed

hi, can you tell me more about pinguin cold caps...are they now approved by doctors to use in US? thanks...

Hi there, I was Stage 1/Grade 3 Her+ ER+ in 2003, I had chemo, Radiotherepy, 20 months of Herseptin (stopped due to LV dysfunction, should have had 24 mths) and 5 yrs of Tamoxifen.  I am still here to tell the tale!!! Lost two 1st cousins to breast cancer since but I have now a large Posteria Benign Meningeoma!!! and painful joints!!   Its been a long journey but I am still able to work and look after my kids.

Hello ALL!!

I don't know if anyone is on this forum...however, I JUST got on this site...am after 6 LONG...LONG...LONG months, I FINALLY begin my journey with my first infusion this week...TCH chemo...IN CHRIST I CAN DO ALL THINGS!!!

If anyone can share with me what I need to know...I've been doing so much research...etc...just am ready to get going...THANK YOU!!!

Hello, I was told that I had Breast CA on Aug24 th after many road blocks I had a double mastectomy done on the 24th of Oct to start chemo on 12/4 6 treatments of chemo and then a year of the Herceptin.The more I read the more I wonder about this treatment.. Tj how are you now doing with all of this?

bonniebug69, I disagree with your statement. Your post is an example of why many woman whom read this site get upset and FREAK out.  If I was the moderator, I would delete such a untrue statement. 

For anyone new to the site and put off treatment by the "chemo only helps a small minority...like 2%" comment, please be aware this statement is probably not accurate for a lot of HER2 cancers (maybe micro-invasive, I don't know about these - I know that is the name of this page but many other HER2 newbies are clearly coming here for answers). I have spoken with my Mum's oncologist & read a number of clinical trial studies about HER2+ cancer (mainly related to women with Stage 1-3 breast cancer), and having chemo and herceptin (which are often only provided in combination) increases the chance of being alive 5 years from something like 50% to 90% (varies depending on nodal status, tumour size etc, but has a major impact on survival), with the vast majority of the survivors also disease free at this point (and beyond).  

I have also read studies showing survival rates before herceptin and the other new treatments were developed, and they are SCARY.

 HER2+ cancer is often very aggressive, but they have some very effective treatments, with more being developed all the time. 

And they are increasingly finding these treatments make a big difference for groups who were previously considered lower risk because of smaller tumours or clear lymph nodes - HER2+ can be sneaky and spread through tiny cancer cells making their way round the body even in these 'lower risk' cases (though again I don't have info on really tiny HER breast tumours).

It's everyone's own choice as to what treatment they want to agree to, but please make informed choices. 

The treatment is not fun, but if I was ever told by an oncologist that herceptin etc would help me, I'd be on it in a heartbeat.

Hi Rlsteadman, your tumour is much smaller than the one's I have been researching (Mum's was 2.2cm plus extensive DCIS) so I certainly don't want to make you second guess your oncologists advice.

I was more concerned because this her2 micro-invasive page comes up way before the plain her2 page, so a lot of her2 newbies with larger tumours are appearing on this page. I'm scared that a comment about chemo only helping 2% of people might put people off treatments their oncologists do recommend. The cancer 'eventually coming back' comment as if it's inevitable is also not accurate - in's not inevitable even in larger tumours - just the risk becomes high enough to outweigh possible side effects of chemo (which can be serious).

It sounds as though they caught yours so early you managed to avoid some of the harsh treatments (not that surgery and rads is fun either) - that is a wonderful thing and I think you have a lot of reason to be optimistic about the future. Please don't feel bad because of what I wrote! xo