Her2+ Chemo before surgery option

Hi  this is my first post and I am hoping someone can help.

 

I was diagnosed 12/1 with a grade 2 tumour and adjacent area of DCIS totalling 3cm. At my initial meeting these results were available but the MDT was a couple of days later. I was given a proposed plan of Wire guided WLE and SNB followed by radiotherapy. 

 

I then had a call to go back to discuss alternative treatment proposals. Results came back HER2+, I was hoping not to need chemo but accept I need it

 

The options are to proceed with surgery on 2/2 as planned then chemo and Herceptin followed by radiotherapy ( + hormone blockers if that comes back positive too)  or have chemo and Herceptin first then surgery then radiotherapy.

 

i am struggling with the option- part of me wants the surgery first to get rid - however it was explained that chemo first enables them to see that the treatment is working on the tumour- so we know it has been effective and can alter it if it isn’t. 

 

Has anyone else had to make this choice?, or know more of the pluses and minuses or where I might find informed info - I am scared to google as I know there is as much misinformation out there. 

 

I thought the waiting for results was bad enough, but would rather be told what I need, not have to choose. 

 

i have been lurking since my diagnosis and amazed at the brave and supportive ladies on here, even without posting it has really helped to know others are going through the same feelings and coping.

 

Thanks

Sue

 

 

Hi Susan,

I was diagnosed on the 29 November 2016 with a grade 3 IDC aggressive 4.7cm lump.

I was also given the choice of whether to have chemo first to shrink the lump or to go straight for surgery.

I didn’t hesitate - straight to surgery. I had my mx on 13 December and I have now been back at work for 2 weeks. It’s the best decision as I am now classed as cancer free (although I do have to have chemo in a couple of weeks and then rads as a preventative measure)

It was never a hard decision for me, I wanted the bugger out.

(p.s. when i chose the mx, it was only then that the surgeon said that it was the best choice as if the chemo failed it might grow bigger)

You are right not to google your prognosis - it’s all misleading and inaccurate on the net.

Sending you hugs.

Susan

Hi found out yesterday im having chemo first , as apparently the lump is quite big and in underarm lymphs just going to put my faith in my breast team as i havent got a clue .ct showed its only in lymphs under arm though i keep panicking as ive had this damn sore throat for few weeks now keep thinking its related , should i mention this to my consultant on wednesday ? .i know its grade 3 what stage i dont know but im guessing 2 or 3 dont really understand the grading /staging thing .i not been given a choice but tbh little glad of that my belief is they know what they are doing .If it means i get to see my 12 yr old grow up and be settled in life which i hope it does then ill go with there decisions despite it being scary .

Hi, Susan61

 

So I’m also HER2+, with a 22mm grade three tumour plus some DCIS.

 

Before they knew it was HER+, the plan was surgery (WLE) then rads then chemo. Was always going to mean chemo because of the grade. When it came back as HER+, we switched to chemo first. I’m about to have my second lot of EC, out of four rounds. Then I’m having four rounds of Docetaxel plus Herceptin plus Perjeta. Then surgery and rads. Plus a full year of Herceptin. 

 

Now unlike you I wasn’t given a choice. My surgeon and oncologist both said this was their preferred approach. It’s not about shrinking the tumour, although that should happen. It’s more that they want the chemo and particularly the Herceptin to get underway ASAP. I trust them, it’s a big London teaching hospital, but I did also do some research to check what’s being done in the US, when people have full insurance cover. The only question that I came up with was whether I should have six rounds of Perjeta rather than four. So in your circumstances, which seem pretty close to mine, I’d be happy to do the chemo first. (I realise you don’t know about the hormone status yet, I’m ER-, which makes it even more important to get chemo underway). 

 

I’m not sure whether they have given you much information to make the choice. If I were you, I’d ask, what they would do if it were them. Or if it were their female relative. If they really don’t think it matters either way, then you’ll probably need to go with your emotional instinct, rather than a factual based choice.

 

Hope that helps, feel free to ask if there’s anything more you’d like to know.

 

Ali 

So I went from diagnosis to chemo in two weeks, but that’s quicker than most people. It usually seems to take three weeks or so. In terms of how I’m managing, no horrible side effects. It’s probably fair to say I’ve had lots of little things, but none bad enough to make me miserable,

 

I am much more tired than usual. Normally I’m able to put in long days, but I’m flagging by about 3. Luckily I work from home a lot, so I’m doing that and avoiding evening events.

 

My hair started falling out on day 16, and is now pretty well all gone. It wasn’t too traumatic, although I can’t really say I’m enjoying the bald look.

 

So, once you have a date for chemo (if that’s what happens first) have a look at the monthly chemo threads. They’re in the Undergoing Treatment section. That’s a good way of seeing what people are experiencing and how they’re coping.

 

Ali x

Hi sue , are you getting pain in your back on same side and have they said what it is ? Cause i have had this past few days but im just hoping it down to lump being in breast .though not had bone scan results yet so fretting on things like has it spread ect x

Thanks ali .heard so many bad stories about chemo , its nice to hear from someone who seems to be getting through it .you sound like a very strong lady .i dont think ill be rocking the bald look but i thought alot about losing my hair and tbh it feels like the least thing to worry about i have quite long hair but am going to get it cut really short so not so drastic when it does fall out . X

Thanks sue .i was only diagnosed on wednesday, my ct scan showed that it is only in breast and underarm lymphs , all confusing to me dont know if ct can show bone stuff as well .bone scan results werent ready so will get them on wednesday unless my nurse phones prior to that .tbh only had back ache past few days and also arm ache …will mention it on Wednesday hopefully just aged pains xx