HER 2 Borderline Equivocal
I had a HER 2 Breast Cancer and then a second Her 2 SISH test and luckily it was negative. However at the same time the Her 2 negative report states that is regarded as Group 4 Bordeline/Equivocal. Has any one had these results and/or had the test done again because it was borderline?
Nerlynx for Her2 + early stage breast cancer
That is great news about Nerlynx. I finished Herceptin in Jan 2018 - a bit over 12 months ago. I have read that to be eligible for Nerlynx you have had to have had Herceptin in the last 12 months. I know this is a new drug but has anyone heard whether survivors like myself who are a couple of months out of that 12 month period would still be allowed Nerlynx... I do so hope so...
New Drug
A bit of a long shot, but thought I would ask. I finished my last herceptin a month ago. My oncologist just called today offering a new drug made avaiable in tablet form. This is to be taken for 12 months. Suppose to improve chance of recurrence over the next 5 years by 5% in most cases. He said could even be more for me as I had one hell of a tumour. This drug also comes with a price $24000 and size effects. I didnt ask what it was called but I wish I had of. Might check in with my breast care nurse tomorrow. Does this info sound familiar to anyone? I already forked out $10000 to pay for Perjeta as part of my treatment plan. So more money is really out of the question. I just had my first lot of scans early this year and they came back all good.Her2 diagnosis.
Diagnosed in Sept 2016, mastectomy and 4 rounds of chemotherapy every 3 weeks, followed by a further chemo every week for 12 weeks. This was a 'nicer/kinder' dose with fewer side effects. Although every week was pretty full on. Found it hard to see the 'light at the end of the tunnel" when I started this. Amongst that was 17 doses of Herceptin - these were 3 weeks apart. After about 13 months it was finally all done. I am feeling back to my normal self physically - doing lots of walking/jogging with a friend several times a week and this has been amazing. Mentally pretty good but I do worry that being diagnosed with Her2 might be the undoing. Anyone else out there with a similar diagnosis. I am also on Letrozole as I'm oestrogen positive. Tiniest bit in one lymph node - so I tell myself I am lymph node clear... ;) Stage 3 - which I wonder is that because it was Her2 which makes the cells grow quickly?? I am 47.
Paclitaxel & Herceptin
Hello Ladies, I am 5 weeks out from having a unilateral DEIP and was originally diagnosed with high grade DCIS. After mascetomy path results came back triple negative with 0.5mm of IDC. but after seeing my oncologist last week she has informed me that I'm now HER2+1(low level amplified). She said by having 3 weekly Herceptin for a year should reduce any reoccurrence from 25% to almost 0. But to get the Herceptin I need to have 12 weeks of Paclitaxel as required by the government ( as I think original trials was done with chemo) the oncologist appologised a couple of times saying I'm sorry you have to do this...as she convey that Herceptin would be enough by itself for me. So on the 17th October I start 12 week of Paclitaxel and 3 weekly Herceptin, then after the chemo I can then have injection for the remainder of the year. im a bit confused how they can give a drug like chemo when there could not be much benefits for my circumstances, I'm a bit perplexed! Has anybody experienced this?
12 months on
Tomorrow is my anniversary. My anniversary of finding my breast lump. A day I will never forget...as I'm sure most of you remember vividly. It wasn't a feeling of...oh is that different? It was a definite obvious hardness just above my nipple. It didn't move. It wasn't soft. I knew the moment I felt it, it was cancer. So I headed into work that day. I knew it was Xmas madness time. My first appointment cancelled so I took myself off to the Emergency Dept at the hospital I worked at as didn't want to wait days for a GP appointment. I knew I needed an ultrasound and biopsy quickly and that was the quickest way to get it. So referral for ultrasound. The Dr pretended to be unconcerned...but later got me in for an ultrasound within 24 hours. She was concerned. I expressed my worry of the services closing over Xmas and this needing quick action. She listened. The ultrasound day was one of the saddest days of my life. My sister in law was dying 300km away of endometrial cancer...we had been down a few days before, her condition had deteriorated and I said my Goodbyes on the phone to her, knowing she was unconscious but possibly still being able to hear me. Then I went for my ultrasound. Nothing like the look on the radiologist face to give it away. She gets the Dr. Then there is the look between them. Oh...we can't really tell you it is cancer...solid black star like lump...but we will biopsy. 5 core biopsies taken. I went back to work...but went home as by this time I was a mess. Of course the radiology report said highly suspicious of cancer. But no results for ever so it seemed. On the 22nd we drove the 300km to say farewell for the last time to my SIL. I was to speak...but when I got to the funeral service and saw her coffin...I couldn't, I was a mess, and kept thinking this would be me and my family soon. All the while keeping this a secret from all but my husband. They had enough grief. So we stayed with them through Xmas. I put on my happy face, supported my niece and nephew, my brother and their families through a very difficult Xmas. Laying awake at night terrified of my future. So we return...no results back until the 29th. My husband was in denial...it might not be...stop worrying. But I knew. I knew the moment I found it. So it was a Es+pr-Her2+ cancer. I only saw her2 on pathology. I googled. Yes I googled. POOR PROGNOSIS....don't you just love those words. But I read. I understood treatment options. I understood recurrence risk. I knew I was facing a fight for my life. So 4th January I head off to Adelaide. ..500km from home. Back to the hospital my husband and I trained at. I sat having coffee the morning of the appointment at the RAH. I hadn't slept all night. I was so anxious. I decided to do a mindfulness technique. I closed my eyes and listened to the breeze, the birds, the leaves, felt the light. Then it happened. I felt my Mum and my SIL around me. It was both their birthdays. Then I heard it. "You'll be alright. It's gonna be alright" With that I felt calm. I went to that appointment calm. I was able to take it all in. Dense breasts. Unable to see in mammogram (clear 5 weeks beforehand)... due to breast density. Strong family history. Mastectomy was my choice. Surgeon suggested bilateral due to history and the very strong chance of BRAC1 gene mutation. I agreed and chose immediate delayed reconstruction. So...the rest is history. Bone scan, CT scan and breast MRI showed no surprises. 23rd January was my farwell boobie party called Dolly's Parting. 25th January was my surgery with sentinal node biopsy. 4th Feb confirmed...node negative Within 6 weeks I start ACT-H treatment. It was hard. I couldn't work but I came through. Letrozole. ..bearable Gene testing...negative :) So here I am 12 months on. I'm recovering steadily from chemo and surgery. I'm back working part time. I'm still a bit more anxious than I'd like to be...but generally I'm doing okay. Herceptin continues. My changeover surgery is planned. Life is precious. I'm so grateful for this site to be able to connect with others on this difficult path. It has kept me sane on those dark days. It kept me busy supporting others just starting out, knowing how difficult this is. I look forward to 2017 being a year of joy. An end of treatment. Hopefully never to require more. But if it's not...I know I am strong enough, and you have got my back.
