help

Dear Girls

I really need your help i was diagnosed with er positive hers 2 strong positive in december 2020 ive done 3 chemos with herceptain. ive googled till my fingers are bleeding and keep thinking the outlook doesnt look good anyone who has hers 2 or h ad hers2 i would really appreciated your input has im going down a rabbitt hole fast

westie ruth

Hello Ruth

First if all, sorry you find yourself here. Now that you are  You will find yourself surrounded by a load of lovely supportive people who are here to listen, offer advices, nswer questions and shared lots of hugs and best wishes.

The 1st thing anyone will tell you is to stop Googling and please stop it now.  If you must look at anything, make sure it’s on reputable sites such as this one, Cancer Care or whatever it’s called and the like.

You can call or ask the nurses on this site or, probably best, speak to your team as they have all the details about you.

Not being in your situation, I can offer any advice bar the above. Hopefully that will get you out of the rabbit hole.

Sending hugs.

Gel x

Hi Westie ruthie

The language of cancer is guaranteed to terrify us. I’m writing this as much for my own benefit as yours as I’m going through a comparable episode.

When consultants and medical staff bandy terms like “high risk” and “HER positive” and, in my case, “highly node positive”, they know exactly what they mean - a kind of code they share so they can make the sme mental links and determine the right way forward. They don’t hear it as a death sentence as we might or a massively traumatising experience. It isn’t a death sentence BUT those things we hear are massively traumatising and, once heard, they can’t be unheard. Dear Dr Google is very effective at reinforcing the trauma. It’s a no-go area for me.

I would suggest that you ask for time with your breast care nurse, or maybe your adjuvant oncology nurse, and hope you get as good a one as I had. You need to tell her your fears. If you are one who needs to know all the details, ask her to take you through your diagnosis and ask what each bit means. If you’re like I was and know you’d live in perpetual terror if you know too much, just tell her how you feel about hearing those terms and talk about coming to terms with what they mean. The fact is, none of us has any guarantees about cancer but, equally, none of us has any control over covid, getting run over or struck by lightening! We find our ways to live with it, with minimal fear. It takes work.

The other day, I had an ophthalmic surgeon and a doctor preparing my consent form for a biopsy on my eyelid (swelling and lumps that do not show up as cancer in two MRIs). Then I heard the words “breast cancer” and “high risk” and immediately I was adding the 2 and 2 to arrive at every solution except 4. I even asked if they were looking for breast cancer (my treatment ended June 2019 and only recently was I told everything’s still fine). Of course they prevaricated - they don’t know what they’ll find. But I found myself feeling very much like you for a short while. Then my inner breast-care nurse kicked in and I got things back into perspective.

While you’re waiting, I would strong recommend you go to YouTube. There are loads of relaxation videos as well as videos addressing things like anxiety, illness, fear. My favourite is Progressive Hypnosis’s Manifest Healing (she has never let me down) and some of the Michael Sealey ones are effective. I’ve found a reiki one rather surreal but nevertheless helpful and soothing. You need a break from the utter stress of it all and that’s a great place to start. There’s also online counselling available for free from Maggie’s and from Breast Cancer Haven right now. And the nurses here (number top right) are very reassuring and constructive.

If you don’t find comfort from your breast care nurse, PM me and I’ll send you the rationalising email my b-c nurse sent me when I was in meltdown. It still comforts and reassures me. But start with a real human being.

Hoping we both get the best possible outcomes,

Jan x

Now Ruth, why would you Google? Is there a doctor prefix there? No! Is it out of date info? Yes! As you have found, it really is frightening, so just don’t do it. You have had some great advice from Jaybro. Big deep breaths, and think slowly and carefully. Oncos do speak in unfamiliar terms…unfamiliar to us, which can be disturbing. Big long words…again disturbing. They also offer treatments, wether the disease is ER+, HR+, lobular or TN. Yes, some types have a better deal than others , but, hey, this is the Cancer Research web site, and because of them we get better deals all the time. New research leads to new treatments. So, instead of that champagne glass being half empty , let’s just top it up and I’ll drink to you finishing your treatment, finding some peace with meditation or mindfulness, and living with…not dying from…this disease. Cheers :clinking_glasses: . Ann x