Explanation of HER2+ Required

Hi Sarah

Thanks for relating your experiences, and for your kind words.  The information is also useful.  

What hormone treatment are you on? How are your symptoms?  Do you have any concerns over the effects on your body?

We have to wait for the FISH test result, and yet another hope for a particular outcome like HER2 negative as Dreamthief mentioned.

My wife's journey started off considerably less threatening than what has now transpired.  It has steadily ratcheted up.

COVID-19 adds to the worry and stress, because avenues of treatment keep getting blocked off..  Surgery is indefinite and possibly 3 months away, if CV subsides.  We are worried that the targeted therapies can be highly detrimental for my wife's eyes, and thus possibly excluded.  They do not seem to be doing chemotherapy at the moment because of immune system problems.

Ideally we would like to get to surgery quite quickly, and then possibly chemotherapy, but as I said they are both blocked off.  It is difficult to see a way forward at the moment, and I don't currently feel that the medics are on side.  They were not as au fait with my wife's medical history as they should have been, when they arrived at a care plan.  To only offer an AI for the next 3 months, and without waiting for the FISH test results, does not inspire with confidence in the care plan.

Thanks again.

D x

Hi Dedalus,

I would be tempted to telephone the surgeon who performed the grafts as they may have that specialist knowledge. Once treatment starts, they do keep a really close eye on your health, with regular blood tests, heart scans and appointments. Your wife will also be given an emergency number that is manned 24 hour per day. 

With regard to differences between hospitals, I know that some people on this forum have changed hospitals. I don’t know whether it’s possible at the moment. I wonder if your GP could advise you.

I don’t know much about taking hormone blockers first. However, the MacMillan helpline is manned by fantastic and really knowledgeable people. It is definitely worth speaking to them. As I was premenopausal, I had the choice between two hormone treatments. I asked the doctor which was the most effective and she said that the zoladex injections with exemestane tablets would be the most effective out of the choices and so I chose them. In November, I had my ovaries removed (very quick op) as I did not want to have to travel to hospital to have the injection every 4 weeks for 10 years. At first, I had hot flushes and aching joints. I carried on doing yoga and building up my fitness and it’s not an issue for me now. The side effects are really different for different people. Some people have a really hard time on them. Equally, the FEC chemo made me vomit and feel dreadful, whereas other people sail through it. 

Take care,

Sarah x

Hello. I was was HER2 borderline so had the Fish test ( and the tumour was also tested again after surgery). 
it came back negative so important to wait until all tests have been completed. 
Hoping for a positive outcome for you

helen 

Hi D,

I can't help with the HER2 or FISH but, regarding Hormone Dependent tumours and treatment with AI's if the results eventually show your Wife is HER2 Neg. 

It is an American site where they have published guidance for Breast Cancer Surgeons and it guides them through treatment during the COVID-19 pandemic with Hormone treatments etc.  It is quite useful to look at the site, all the Oncologists and Breast Surgeons throughout the World meet annually for the ASCO Conference and my Onco spoke highly of the USA's knowledge, so worth a look.

You can access it under the Discussions on this site, Page 4, headed, Newly Diagnosed Hormone Dependent Tumours during the COVID-19, What Happened has posted the link, click on the link.

Sending Best Wishes to both you and your wife during the difficult Cancer journey, being made more stressful with Covid and the postponed treatments. 

Hi Sarah

Thanks again for your further reply and good advice.

I have been in touch with the eye surgeon and we are still waiting for a reply.  It seems a rather specialised question.

It is good to hear that your side effects are no longer an issue, particularly when you are taking an AI on top of an oophorectomy.  This could be very similar to my wife's situation as she has had an oophorectomy and hysterectomy.  She was particularly worried about the double whammy!

Best wishes, from both of us.

D x

Hi Margaret and Karen

I must thank you for your kind advice.

There are some really nice people in the Breast Cancer Group.

D xx

Hi peterawake

Thanks for that link.  It is very useful

Best wishes to you also.

D

Hello, Dedalus

I wonder how things are going now for you and your wife. I wish I'd seen your posts earlier.

I had pre-mastectomy chemo plus Herceptin and pertuzumab for 12 weeks for HER2 grade 2 breast cancer. Then mastectomy on April 1st. Among the side effects of pre-op treatment were blurry eyes.

Now am just on Herceptin post-op and eyes  are blurry again. Am sure is corneas, not inside eyes. As this is a real concern for your wife due to her corneal grafts, I hope very much that her oncologist or eye doc has sorted out what to do to keep her eyes safe while killing the HER2.

I suppose you've googled HERCEPTIN CORNEAS If you have, you'll know this effect on the corneas is extremely common and seems to be treatable with drops.

The scholarly articles on google lament the fact that this problem is not addressed.

Please God it has been addressed for your wife, and I hope that the drops work on donated corneas.

God bless you both

Hi Bertha

Many thanks for your concern and kind words.

My wife subsequently had the FISH test which designated her as HER2-

She has had a lumpectomy and is waiting for a belated oncology consultation 10 weeks after surgery, then subsequent radiotherapy and endocrine therapy.  At the moment the radiotherapy will be at least 12 weeks post-surgery, which is a bit of a worry considering the NICE Guidelines advocate approximately 31 days.

The interaction of endocrine therapy and ocular health is still a considerable concern.  We have found the medics are not really across the issue.

I hope your eye problems clear up soon.  We read that chemo-induced eye issues do usually resolve.  Some research papers advise 3 monthly ophthalmology examinations.  My wife intends to adopt this strategy.

Best Wishes

Dedalus

Hi I have just been advised I am her2 positive. Can I ask what you er score was and pr. My er is 8/8 and pr 7/8 grade 2 20mm, lymph nodes clear.  Best wishes xx