HER2 Support Group Forums - 10 years NED 19 positive nodes

I first noticed symptoms under my arm two months prior to my diagnosis. I had been getting undressed and lifted my arms up to remove a necklace. It was then I noticed a strange “vein” under my arm. As I have an autoimmune disease that can cause clotting – I ended up in A&E were they scanned my axilla using ultrasound. No clots were detected, but I was but on heparin and I made an appointment with my rheumatologist. He said it wasn’t anything like a thrombosis and suggested I had a mammogram.

I saw a breast surgeon with my negative mammogram report, which ordered an ultrasound. Still NAD. Around this time the vein seemed to disappear. I noticed red flushing on my breast every time I exercised or had a shower – but it was put down to hormonal changes and I was put on high dose evening primrose oil!!!

A couple of weeks later I noticed petechial spots on my breast and was diagnosed with Mondor’s disease by the breast surgeon. Higher evening primrose oil dose!
I had completed the trio of testing which excludes most breast cancers – mammo, ultrasound and examination by an expert. I was supposed to relax now.

Finally took to the internet and found images of cording in the axilla just like mine. I convinced my husband to ring up to get yet another appointment, my third in 7 weeks.

At this appointment a biopsy under ultrasound (if they could find something to biopsy) was planned. My husband had to fly to the UK for his mothers funeral, so I went it alone whilst my mother looked after my sons.

At the ultrasound, a student was practicing on me under supervision. She saw something behind the nipple that she questioned, but was told it was just nipple shadow. Thank God she persisted and said what about from this angle then?
The radiologist was called and he said the same thing – just nipple shadow until she showed him an alternate view.

I’m not sure if I was glad or not that they had found something at this stage, but at least I felt I wasn’t going mad. And anyway the radiologist said don’t worry it won’t be cancer!
The radiologist didn’t want to do the biopsy then as it was 5pm but I said I wasn’t going anywhere. The usual number of biopsies taken is 2-3 but for some reason he did 5. At this point he said if it was me I would want to be sure – Hmm.

The following Monday I was due a call from my breast surgeon. He rang at me and began very jovially saying he had my results. Suddenly he stopped mid sentence and said he couldn’t say any more as the results weren’t all in. I asked him what he meant and did I have cancer but he simply kept saying he would ring me when the full results were in. (I gathered later that his secretary puts all the “good” results on his desk for him – but she hadn’t noticed that only 3 biopsies were returned and the others were to be re examined.) Thank God the radiologist took all those samples.
I was so devastated as I knew why the results weren’t all back – but again thought maybe I was just over reacting. I phoned a friend to ask how she would interpret what he said – and then I knew I wasn’t .
My husband was still in the UK so I opted to wait a couple of days for him to return for my official results – even though I knew. Within this week I went from having one node palpable to 3.
I had surgery the day after my results. Lumpectomy , total axillary clearance – 23 nodes removed.
The pathology showed grade 3 HER+++, er-, pr- with 19 positive nodes and some spread into the axilliary tissue.
Bullseye!

I completed 4 rounds A/C and 4 of taxol
then had 30 high dose rads to breast and axilla and supra clavicular nodes.
At this point my oncologist asked if we would consider Herceptin. At this time it was not available in Australia without self funding. After paying for one year the funding came through- but I was not eligible for any further treatment because I had already received Herceptin. I decided to go the 2 years as there were no clear results on one versus 2 years at the time and I had lots of nodes.

On the way I have had some minor (!) upsets.
About six months after finishing radiotherapy I developed tingling and numbness in my fingers and forearm. Nerve studies were inconclusive – was it from my cervical vertebra, radial nerve damage from radiotherapy or spread?
I had the full scans – the radiologist reported lung secondaries – but my clever radiation oncologist decided it was lung tissue irritation.Phew!

I get what they think is low grade infection in my breast tissue on and off – which initially was of great concern as it mimicked my original symptoms of breast cancer – redness, swelling etc. I have to take high dose antibiotics for several weeks when it flares up, and I cant take high dose steroids without it resulting in a massive reaction.

After four years my oncologist told me to worry about other health problems as they were more likely to kill me! I then discovered I had high cholesterol and very low vitamin D.

What’s changed.

I took up skiing after 20 years and am now, as my son who was 5 when I was diagnosed and am now a strapping lad) says “ a nervous expert”. Well after a broken arm one year and a broken leg the next moguls are no longer fun.
I went to Uni as a mature student.
I continue to exercise as I always have and did throughout my treatment (with a bucket by cross trainer) and still maintain a strenuous routine. Pity it doesn’t result in a svelt body!
I never have bad hair days.
I eat lots of chocolate.

Not so good news.

Last year I discovered I have a genetic disposition to breast cancer, not BRCA 1 or 2, but what they call multiple low risk genes . I now discover that I am at high risk of a second primary breast cancer. Bummer! I now get yearly MRI ‘s and Mammograms which means I am screened 6 monthly forever.

I hope that this helps those of you who are early in your diagnosis and wonder if anyone gets there . Yes they do.