My breast cancer is Her2+ - any positive outcomes or anyone know someone that has gone on to have children?

[zaya]

Hello, all

I hope I can get some guidence from this forum.

My name is Zolzaya from Mongolia. I was diagonised invasive breast cancer carcinoma with no special type this year Feb. Grade-3, Stage 3A with ER+ PR /-/ and HER2+.  I had 2 rounds of chemo weekly regime as a neoadjuvant and then on 20th of April I had a single breast mastectomy. 

So, from 23rd of May, I am starting my first round chemo of 6 round.

What's more, I need to be on  Herceptin for a year, but there is no organisation or my health insurance does not cover this medication and not sold in ou country. Even though it is sold in Mongolia, it is noway that I can afford it.

Therefore, is there anywhere that I can contact to any foundation that can help me with medication. Do you have any suggestion.

Thank you and take care

Kind regards

Zolzaya

[saralynn]

i was her2 as well. stage 3B. after i stopped chemo my heart had a minor issue but fixed itself. i been cancer free since 2010. im healthy, happy, i had a baby and trying to have more. i made a video on my journey. please check it out. https://youtu.be/d13g9Wky4us

[gcinny]

hi gretna, im also 26 and diangosed last june, her2 positive grade 3, finished chemo and now starting rad..im hoping i can still have kids as well 😞 i just got engaged...but im just very worried about feritlity although iv been on zoladex for fertility protection. how r u doing now?

[Amero]

Jean that is really good to hear that you have gone 9 years. My Onc has told me that my most likely time for recurrence is within 2years due to the HER2+ status so it is really encouraging to hear your story.

Love Amero

[jean]

hi, Im new to the forum. I was diagnosed 9 years ago with  invasive ductal breast cancer, aggresive grade 3, her2 +  3.4cm tumour, 8 involved lymp nodes.  I had mastectomy, lymph node clearance, 3 FEC. 3 Taxotere,

radiotherapy, followed by herceptin for one year.  I am so far fit and well.

[Amero]

Hello Marie. I am the same as you. HER2+ stage 3 ductal carcinoma. I was diagnosed this time last year and had neo adjuvant chemo -FEC followed by doxatacel, then axillary node clearance and local wide excision.The chemo was so effective that it shrank the tumour by more than half so avoided a mastectomy. I am now still on herceptin, but cancer free following the surgery and hoping to stay that way! I have had problems with leg weakness and lymphoedema, but the leg weakness is getting better with physio and I am having treatment for the lymphoedema and that is improving too.

Best wishes to you in your treatment.

Love Amero xxx

[MarieH]

Hi Just come onto this forum and I know I'm a year late but am also HER2+ and stage3 ductal carcinoma. I'm on Herceptin too, had two jabs so far every three weeks with taxol, and also perjeta (pertuzumab). 

I'm hoping this is going to slap cancer back into oblivion as I don't want it back anymore than any of us do. But I'd love to hear how you are getting on, and any SE's and positives from it. There is too much scary stuff on the internet and it's good to know weare getting the best drugs available. 

Hope all is well with you 🙂

[Peanut89]

Hi

 How are you getting on with having to wait 5 years to have a baby? I am also finding this very difficult as my partner and I pretty much just started planning on having a baby together then I too was diagnosed and then told to wait 5 years! I will be 30 then which is fine but it wasnt my plan and it really gets to me. I spoke to my breast care nurse and she did say it may be a possibility after two or three years which is better as all we want to do is get on with the happier things in life as soon as possible! Has anyone else stopped to have a baby before 5 years?

xx

[gretna2011]

Hi Sunshine,
I have recently been diagnosed with grade 3 invasive ductal cancer, HER2 positive. My lymth nodes are affected and I am due to have my second op to remove all lymph nodes.
Being only 26 my main concern about treatment was my fertility. I have been married 2 years and me and my husband were planning on starting our family this year, so to be told I have breast cancer and I will need chemo it was devistating!
I have been told that the chances of having children in the future is quite high due to my age.... They have also told me that they would reccomend we not try for children for at least 5 years (a bit of a shock considering we were going to start within months)
I would also love to hear stories of people who have successfully gone on to have a family. Good Luck with your treatment x x

[Lola65]

Hi,
I am at the start of this journey. I was dx in December 2012 with grade 3 invasive ductal cancer, ER/PR negative, but HER2+++ positive. Lymph nodes clear. My medical team told me I am "lucky" being HER2 positive because I can have the wonder drug Herceptin. I start my treatment after Easter, 6 lots of Taxotere/Carboplatin/Herceptin, then another 12 Herceptins and radiotherapy. Herceptin certainly seems to be the wonder drug it was hailed to be when it was first licenced, and we HER2 pos people are fortunate that it is available throughout the UK which wasn't the case only 2 or 3 years ago - it was one of those postcode drugs.
Linda xxx

[amber32002]

Hi. I was diagnosed with HER2+ Grade 3 breast cancer over two years ago. Had 4 x FEC and 4 x Tax chemo (found it do-able), which shrunk the lump (2.3cm, no nodes involved) so I was able to have a lumpectomy. Then a heck of a lot of radiotherapy, and four months of herceptin (which hated me, oddly, so I was taken off it). So far so good.
After two years, it's pretty much life as normal now (barring all the leftover things from cancer that remind us of what's occurred). Hopefully you'll find the same. Certainly on the new treatment regimes, odds of 80%+ are common.
Ann x

[Ruby1]

Hi Sunshine
I was diagnosed in June 2007 with HER+ breast cancer, several lymph nodes involved and grade 3. It's now coming up for 6 years since diagnosis and I'm doing ok. I had 6 rounds of chemotheraphy, mastectomy and lymph node clearance, radiotherapy and a year of Herceptin. I then went on to have preventative surgery to the unaffected side so had another mastectomy and reconstruction 2 1/2 years ago followed by reconstruction of the affected side at the end of 2012. Although I was young at diagnosis, I didn't have time to go through fertility treatment and my medical team wanted me to get started on chemotheraphy as quickly as possible. Although my periods came back about 6 months after chemo finished, they did start becoming a bit erratic pretty quickly and I went to see a fertility specialist who said that I was going to go through an early menopause due to the treatment however as I said before, they did come back and all was ok but i wasn't in a position to start thinking about having babies then and certainly mentally wasn't ready to. Now for me I think it's too late and it's hard but the main thing is I'm still here and doing ok. Hope this helps a bit.
Ruby xxx

[squeakymouse]

Hi Sunshine,

I was DX last year with HER2 positive ER/PR negative BC, Stage 3 Grade 3 and I had chemo and started Herceptin before MX and ANC. I had a complete response to the chemo and herceptin which means that they found no live cancer cells in any of the tissue removed in the op, only the remains of dead cancer cells. This was from a tumour 80mm x 60mm with 6 lymph nodes involved, so a good result! I am still on Herceptin, 4 more to go.

I have no children (through choice), but my periods started again 4 months after finishing chemo, which I wasn't expecting because I was 46 and thought it would bring on the menopause permanently because of my age.

Squeakymouse xx

[sdfmeg]

Hi sunshine paroles,

you do need to bear in mind that a lot of the stuff you will find on the Internet is out of date and downright inaccurate. Some of it is useful, but don't accept what you read too readily. Even if you find reliable sources, don't forget the findings will be based on trials which have taken place over a number of years and the people referred to will have been treated with whatever was available some years ago - so unlikely to be the same as yours.

Not sure that my situation will be helpful, as I was diagnosed with DCIS so caught before it became invasive. However, my tumour was ER- and PR-. No idea about Herceptin status because they didn't test for that way back.

That was in 1991. I was 31, with two little boys aged 3 and 1. Went on to have my daughter three years later, and I was cancer free for 21 years. Back again, unfortunately, but this is a new primary and not related to previous diagnosis.

HER2+ is a good thing because it means they have another treatment they can give you to fight the cancer. If you look under the "targeted therapies" section of the forums you will see lots of posts from other people having herceptin. You are not on your own.

Cyberhugs,

Margaret

[dawnhc]

Hi sunshine,

I am not sure my response is going to be much help to you but I am one of those who is 'just' HER2+ and not er/pr +. I was first diagnosed back in 1990 (23 yrs ago!) when her2/herceptin wasn't around and I got attacked by this wretched disease again and again. Then in 2004 having been diagnosed with secondaries and a couple more chemos failed me they checked on past tissue and found I was her2+ and put me on herceptin. All the swollen lymph nodes disappeared within days and I have been on herceptin since admittedly with extensive bone mets but herceptin has given me another 10 years. If this is the right drug for you then hopefully you will have many more years. If it is not - then there are a number of new drugs around and being trialled that are taken alongside herceptin and you could say filling a gap.

I hope there will be a few more posts for you about positive outcomes to give you hope.

Dawn
xx

[sunshine_parol]

Hi All,
Just wondering if there are any positive stories out therepeople with with HER2+ breast cancer? Told mine is HER2 receptive, grade 2.
The Internet doesn't seem very positive but the BCN nurse said that my prognosis was good (they used predict!)!
I haven't had a scan yet but have had ANC (2/18) and now going through fertility treatment after having a MX!

Would love to hear some positive outcomes? I have seen so many that are ER/PR receptive so feeling a bit alone with the HER2 bit!!

xx