68.6K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

I have HER2 positive

5 REPLIES 5
SLou296
Member

Re: I have HER2 positive

Hi Kay, I'm 5 months ahead of you, my chemo finished 4 weeks ago, I have had 4 of the 18 Herceptin injections and I'm going for my radiotherapy planning session on Friday so should be having 4 weeks of that July/august. 

The chemo really isn't as bad as you fear I've had 6 x FEC-T and whilst its not pleasent it is totally manageable.  The hospital will give you drugs to manage any symptoms, I haven't been sick once and have been out walking on the not so good weeks and running & cycling in the good ones.  I'll be honest there have been some days where I have curled up on the sofa with a blanket and waterbottle but these have been relatively few.

The hair loss is crap but it happens once, my advice, unless you are planning to cold cap, get your hair cut short before you start, IF it starts to come out in handfuls, have your 'GI Jane' moment  have a cry and move on, if it doesn't leave it - not everyone's hair falls out.  I have a wig and loads of scarves (which  prefer) and, once you've walked round Morrisons with your scarf you can go anywhere 🙂 Mine's started to grow back now - I think I preferred the smooth polished look to the soft fur I am sporting at the moment - lol. 

Honestly, it will get better once you get started, you are almost through the worst bit.  Good luck xx

kaytonks
Member

Re: I have HER2 positive

Hi x I was diagnosed with er+ and HER2 positive, I was told that I had 2 lumps, 6mm 4mm. Turns out after the lumpectomy, there was a 3rd, measuring 19mm that the mammogram or ultrasound failed to detect. I had my oncologist appointment Monday evening, and told I had a high risk of it returning, my world fell apart. The cancer was also detected in 10 of 17 auxiliary lymph nodes. My chemo starts next Tuesday 6 rounds every 3 weeks, herceptin starts 2nd round of chemo, for 1 year then radiotherapy. Without treatment over 80% of it returning, with chops it down to about 37%.. I am totally dreading all this, I'm going for a wig fitting Monday while I have my own long blond hair, to try find something that matches. This seems like an endless road. Plus I have been told I need a bone scan.is there anything else to be thrown my way ! X good luck to you all x
blueash
Community Champion

Re: I have HER2 positive

Thanks for the replies. It really is helpful to know that other people are facing similar challenges. I am quite alright about the whole chemo thing now that I know it is necessary and why. At first I resisted because my cancer is so small - about the size of a peppercorn they told me.

 

They have offered me a "cool cap" which  saves some people's hair or a good percentage of it anyway. It is not guaranteed and I might not like the sensations but I am going to try it. I think I will do a search on here to see what others think of it.

Sarmori
Member

Re: I have HER2 positive

Hope all goes well for both of you with your surgery this week.  I am about a week behind you - I have a lumpectomy and sentinel node biopsy on Wednesday the following week.  Also still can't get my head round it - it's like a whirlwind - although I'm glad things are happening quickly because I just want it out of me now I know it's there.  I have a 14mm cancer but don't have the other ER+/- and HER2+/- results back yet, so I've been told def. surgery and radiation but don't know about chemo.

 

All the best to both of you for your operations.

Regards, Sarah x

Cat79
Member

Re: I have HER2 positive

Hi Blueash,

I'm having a lumpectomy and Sentinel Node Biopsy on Tuesday too.

I also can't believe how quickly it has all happened. I saw my GP 11th May, scan biopsy etc 25th May, diagnosis 1st June. They did offer me 14th June for my op but I had commitments for my kids so they delayed for two weeks.

I have an Invasive Ductal Carcinoma 11mm HER2 negative but oestrogen positive. I know I will need 3 weeks of rads but won't know about chemotherapy until I get my results on the 13th July. I'm not looking forward to another 2 week wait.

Wishing you lots lid luck for Tuesday and a speedy recovery.

Hugs,

Cat x
blueash
Community Champion

I have HER2 positive

Hello,

 

I cannot believe how quickly my life has been turned upside down. I have noticed staining on the inside of my bra for several weeks and when I went for my medical review (I take a statin) I mentioned it to the practice nurse. She left the room and returned a few minutes later saying that a doctor had mad a referral to the breact clinic. That was on Tuesday, on Wednesday I gat a call asking me to attend on Friday.

 

I had a mammogram and a few biopsies. Then within a couple of days I was called back for more biopsies.

It turns out I have a 3mm HER2 positive but hormonal negative cancer. I am having a lumpectomy plus Sentinal node something or other this coming Tuesday so 4 weeks from mentioning it to the nurse to surgery.

I think the NHS is fabulous!

 

After surgery I will need chemo but I have yet to meet the oncologist.

 

I feel as if this is happening to someone else and that I am watching a film - I do not feel ill at all.