Changing treatment plan

Hi all,

Just received confirmation that I am getting everything that they can throw at me in terms of treatment.


Diagnosed end of November with grade 2 IDC and second area of DCIS. At that point the treatment plan was mastectomy and 10 years of tamoxifen.


Mid-December and the pathology following surgery comes back as grade 3 not grade 2 so we start talking about chemotherapy. I have the oncotype-dx test and wait for results. Results come back as high risk of recurrence so chemotherapy recommended.


Late January I start chemotherapy and the oncologist tells me they are retesting my HER2 status as local labs gave negative result and oncotype-dx gave positive result. So I may also need a year of herceptin.


Today, it is confirmed that my tumour was HER2+ so now instead of the very simple surgery plus tamoxifen plan, I now have a full 18 months of treatment to get through.


Feeling a bit cheesed off right now… 


Rant over!

Carmen xx

Poor old you - you have every right to feel cheesed off! Bad enough to get the first diagnosis without all the rest. Stay positive and hope the rant helped! Love Eileen xx

Hi carmen - scary that the lab got the her2 status wrong in the first instance - we have to put so much faith in the advice of our clinical teams … I don’t know how I’d feel about this. Good job u had onco test -I’d certainly b ranting!! I’ve got oncology meeting tomorrow and will c what they say but I want the onco fx test as I sm going to b borderline chemo decision and every cough at the moment I’m thinkig “is that cancer?..” Hope chemo goes as ok as it can xxx

Hi Carmen, wow, what the news. I think you have every right to be super upset and angry, and having any other emotions for that matter. I would at least, I know. I’m all sitting with super little information even with my surgery being postponed and postponed all the time. I think tomorrow will already be better for you, and the next day much better. But imagine!  After the 18 month you’re free!! You’re healthy! You have all your life ahead of you! I’d go to Maldives for a couple a weeks a least to celebrate if I were you :slight_smile: xxx Julia

Well, first they told me it’s to happen 3 weeks after the diagnosis. Then they decided to do a genetic test because of the family history and that would delay the surgery by 1 week as tests results take time to get ready. At the genetics they gave me a slot of 1 week, when the results could be ready, so that postponed the surgery by another week, and yesterday they told me that my surgen would be available another week later. So in total it makes it 6 weeks after the diagnosis. I’m sure they mean well and they say it’s safe ti wait. At the same time they cannot predict tumor behaviour for sure. And I’m nervous of such a long wait. Another option is to go into surgery directly with different surgeo and no genetics results but then I’m facing a second surgery later on if the gene turns out to be in my system. I have no idea about the Her2 yet either. So it’s all very distrubing, the uncertainty, the wait, the lack of info and at the same time knowing that the cancer **bleep** is in me… :frowning:




Hi Carmen
With you all the way. Diagnosed with grade2, 19mm tumour at the beginning of November. Not a problem, surgery, bit of radiotherapy, no impact on my life expectancy (I didn’t even ask the question). Wide incision doo dah on 5th December, woke up to nodes removed, drain in (not happy). Tumour was grade 3, 2.5mm (almost an aside it would appear). Surgeon suggested Oncotype dx test because of positive nodes. Saw oncologist at beginning of January, BINGO! HER2 + as well! So Oncotype dx test not suitable anyway. Started on chemo on 30th January. Then herceptin, then radiotherapy, then hormone therapy. Full whammy. Much the same as yourself. Felt like they were feeding me the results in dribs and drabs.
Also like you - a bit cheesed off! At no point has anyone even sat me down and gone through the long term prognosis and the potential impact of the new results.
Sorry for venting! It did strike me that our stories are so very similar. Hope your chemo has gone ok and the se have not been too bad.

Hi Lynne and Carmen x I’m due to start chemo soon ( waiting for letter ) and just wanted to say hi and wish u both wellxx I went from lumpectomy to single mx to bilateral mx in a very short space courtesy of many different tests - no rads but fec chemo then 10 yrs hormone tablets - roll on the summer …

Hi Lynny,
Yes a holiday would do you so much good, I felt like I’d got some of me back after our little break at Center Parcs. You will be quite near the end of chemo by May, so maybe you’ll be able to shuffle your treatment dates. I guess all you can do is ask.

Surgical team were very certain that I wouldn’t need radiotherapy so hope oncologist feels the same. It’s good that he’s checking though as it reassures me that they are doing the right thing, just hope he agrees with surgeons! :slight_smile: