What type of breast cancer do you have?

I was diagnosed HER2 positive in March 2015. I had a lumpectomy (clear margins) 6 rounds of FECT-T and Herceptin injections radiotherapy finishing in November 2015, started on Tamoxifen in November and finished Herceptin in August 2016. Sadly this year the HER2 metasised into a brain tumour (the usual place for it to re-appear) and a small lesion was found on my liver and two tiny spots on my bones (skull and shoulder blade). Had tumour removed in May (day after it was found) finished whole head radiotherapy two weeks ago and start chemo on 10th August - Herceptin and Kadcycla IV. On Monday I had a portacath inserted ready for the chemo and every 6 weeks will have Denosumab injections as a precaution (they are not sure about the bone cancer but I do have chronic arthritis starting which is the same treatment).

Don't meet many HER2 positives - I have enrolled on the ESTHER study which started in February 2015 and needs 390 women, as I have gone on the list in June 2017 I suspect they are still short of applicants - showing how rare it is I guess? 

I was diagnosed with IDC HER 2 positive i  june and had first treatment of FEC-T yesterday and will be having Herceptin and perbuzumab in cycle 4 then will have a right masectomy and reconstruction and have positive lymp nodes to be removed.

 Hi

In response to the triple negative ladies what treatment are you having? I've had 5 rounds of chemo but had to stop as my bowel perforated in the middle so recovering from that surgery before continuing cancer treatment. I am opting for a mastectomy but unsure whether to ask for a double mastectomy due to the reconstruction aspect and what a big surgery it sounds to be. Has anyone come across any research where it has returned in a non cancerous breast as I'm really struggling to find advice on this decision . Thank you x

I'm not really used to this site yet. I have grade 3 ductal carcinoma triple negative also. 

I was diagnosed with triple negative BC. I was given six rounds of chemo followed by 3 weeks of radiotherapy. I was advised that triple negative is slightly more likely to come back in the first five years and after that slightly less likely. I was given the choice between a lumpectomy or a mastectomy. I dithered as I was told that with a lumpectomy it was slightly more likely to return but the with a mastectomy I would have to wait for it to heal before I started chemo  I then pressed the consultant with thetypical question - what would you do if it was your wife? After a delay he said he would go for the less invasive option thinking that in a couple of years I might regret a mastectomy. So I went for a lumpectomy - followed by chemo and then radiotherapy  I have no idea if this was the right decision - it is so important and you don't know what to do. All you can do - is trust the experts - my consultant was very well known and the senior person in the department and lectures on it- so I followed him. I - so far - am ok but I have the constant worry about a cancer returning - and of course I have no medicine to take which is why they give you chemo - but I am regularly checked - and I suppose I have done well. Best wishes for you and the future x

To add to the above I think I was operated on first as the cancer had not spread to the lymph nodes before chemo - for the rest of the body because it can be carried in your blood. X

Hello!

Mine was 25mm stage 2, grade 3 IDC, diagnosed in January 2017. Just finished six rounds of FEC-T and start my five weeks of radiotherapy on Monday.

As my cancer is ER7 (Her2 neg), I've just started taking Tamoxifen for five years. A few hot flushes so far, but no worse than the chemo gave me.

I had a lumpectomy, three lymph nodes removed, one of which was positive, so I'm having radiotherapy to the nodes as well as breast. 

I had triple negative breast cancer. Which is clear now. Just have four weeks of radiotherapy. Feeling very anxious at times 

Hi. I have been diagnosed  with secondnary breast cancer in April. My initial breast cancer was 6 years ago. I have met in the lung a rib and the meditistinal lymph nodes. They are currently trying to establish hormone receptor status.  For now I am on Letrozole,  my last 3 month scan showed no progression.  I would like everyone to talk to ladies in a similar position to share all the ups and downs ahead and would be interested in hearing the different treatments you are having and the effectiveness if any.

Thanks,

Denise x

Hi Denise!

I was also diagnosed with secondary breast cancer in May - in the lymph system in the lungs, bones (hot spots in spine, ribs, sternum, hips, clavicles). Biopsy of thickened heart tissue also showed secondary cancer cells, so I'm assuming heart is also affected! 

Original cancer (Nov 2013) was right breast  - 10 cm Grade 2 invasive ductal carcinoma  - ER 8/8 and HER2 negative. One micrometastesis in one of the sentinal lymph nodes (they couldn't find many nodes!) Had mastectomy without lymph node strip as they couldn't find any! This was followed by 6 sessions of FEC-T chemo and 25 sessions of radiotherapy, apparently as belt and braces treatment to ensure as far as possible that the cancer was gone! Was on Tamoxifen from August 2014 until end of May this year. 

I've just had the results from the hormone receptors this time - ER+ as my original cancer was, but still awaiting HER2 results. They've now taken me off the Tamoxifen as it obviously hadn't worked for me!

I'm now on oral chemotherapy - Capecitabine - this will be a permanent thing 'until it stops working', after which who knows? I've done 2 cycles so far, and the lung symptoms - permanent dry cough and severe breathlessness have almost disappeared, which is good. I also have to have denosumab injections to strengthen my bones. I'm also on prednisolone (steroid) to reduce the severe inflammation that was in my lungs. Luckily, I'm getting away with pretty mild side effects so far, although I have been warned that fatigue can become an issue given the permanent chemo.

There may also be some radiotherapy in the future if bone pain becomes an issue. If the HER2 results have changed, there may be more drugs!!! 

The treatment is palliative/maintenance rather than curative and there are lots of scans and xrays to monitor progress (the bone mets seems to have appeared quite quickly as I had an MRI for an unrelated issue in Jan this year and there was no sign then), but it's going well so far! Long may it continue!

Best wishes to you - hope they isolate the hormone receptors quickly and can look at any more treatments that may be available/effective! 

Cathy