Hello, i also live in Barnsley and im under there care and go to rotherham too… breathing space i think is called?
How you doing? 
i had my double mastectomy at barnsley on 18th december.
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Hello, and i believe you get phesgo if you are lymph node positive. Its a combined injection with herceptin in it. I was on phesgo but because i had a pcr and my nodes was clear etc they switched me on herceptin only now.
Hi. Sorry to hear about your diagnosis and hope you are healing well after surgery. Yes it is breathing space that the clinic is run from . Have you seen a oncologist there yet? I had my surgery 28th August after finding a suspicious hardening in my breast in july. Was less than 4 weeks to getting the parasite out which was brilliant. I had a lumpectomy for a 24mm tumour and one lymph node removed which came back negative. I am Her2 positive, Er positive. I have had 12 rounds of weekly paclitaxel chemotherapy and 4 herceptin for the her2 + so far which will continue until late October .Ive Started letrozole tablets for the hormone therapy and just this morning have got my radiotherapy referral so booked in for a CT scan at weston park early February.
Tbh the chemotherapy was doable. Mainly sleep issues at fatigue and a taxol rash which im on tablets and steroid cream at the moment. Recovering from surgery for me was the hardest i had quite a few healing issues there.
I must say i panicked at 1st being her2 positive but ive read the Herceptin is the miracle drug for breast cancer . What is your status. Im guessing her2 as well as you mentioned Herceptin. H x
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Oh and had Zoledronic acid too
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I think its to do with node involvement. I was node clear so Herceptin for mine
Hi, just wanted to clarify that phesgo is not given because you are lymph node positive (just in case you aren’t and get worried about getting phesgo). I had a 21mm triple positive tumour in my breast and no node involvement or suspected node involvement, but was on ECT chemo with phesgo injections (got 7 injections before switching to Kadcyla due to not having a complete response to chemotherapy). Phesgo appears to be the more generally used one now as it contains an additional drug to trastuzumab, so it may just be certain other criteria (for example, @jeml was changed to Herceptin after an excellent response to chemo) or oncologist preference as to whether Herceptin is used instead. It’s hard to say as we and our treatment plans are all different due to differences in tumour characteristics etc. Worth checking directly with your own oncologist next time you see them 
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Thankyou for clarification and @diddlydi1 sorry hope i didnt scare you. Like @belle1 says we are all unique and so is the parasite we have been unfortunately gifted
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Yes i have seen the oncologist there twice now they are always running behind though so if you do go expect to be there for a while and take snacks etc just incase.
And mine is just Her2 positive and nothing else. I had 6 rounds of chemo along with phesgo and i also had my radiotherapy CT scan last week so i will be starting radio on 5th feb im only 33 so was quite a shock as when i found my lump i just expected it to be benign.
@belle1 ahh i see, i know you do have phesgo if you are node positive as my oncologist said last week i was on phesgo because i was node positive but now i have had node removal and got response i switched to Herceptin alone. True we are all different and we all have our treatment plans set out specially for us so we can’t compare really. X
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@jeml Oh bless you. Yes you are very young. And like you say must have been a shock for you I was 51 when diagnosed 52 now and yes been 3 times now to see oncologist… 2hrs behind 1st time 1.5 hrs 2nd time but only 30 mins on Wednesday this week. Got my letter for radiotherapy this morning. My ct is 10th February. Just need to sort transport. Going to use transport bus from oakwell to save stress of driving into Sheffield. I was given surgery date 10 days after biopsy so was all booked in. Afew days before surgery i was told there was enough tissue from biopsy to test her2 and it had come back positive so had to make a decision as to go ahead and have surgery or have chemotherapy 1st to shrink tumour and surgery after with it being 24mm , up to 20 mm i wouldnt have had to make a decision. Oncologist was a 6 to 8 week waiting list so i went ahead as planned with the surgery.
I was offered Phesgo with Docetaxel/Carboplatin as they thought my tumour was 2.5cm but after an MRI it was sized at 2 cm. Both chemo and Herceptin/Phesgo are cardiotoxic meaning they affect your heart. I had a family history of heart problems and my own SVT so the smaller tumour allowed my treatment to be changed to Paclitaxel and Herceptin which would be less medication ( 1 chemo/1antibody versus 2 chemo/2antibody) meaning less toxicity. The consultant was clear that had my tumour been 2.5 cm we would have had to have a serious chat about going with the first treatment plan. I had no lymph node involvement.
Even on my regime my ejection fraction (how well your heart is pumping) was reduced from 68% to 57% ( I think, it’s been a while since I had my last scan). Normal range for woman is 55-70%. This should improve over time so the changes are reversible.
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They never gave me that option just was chemo first with me along with phesgo and then i had my double mastectomy on 18th december. I am going into a induced menopause though and will be starting the infusions next. I had a good respose to chemo though i had a CPR after 5 rounds might have even been 4 who knows. Anyway all i know is i need to start living my life again now! My daughter turns 3 next week and i feel so blessed to be here.
It is a bugger getting there! I will be there on the 10th too i will be having my 3rd round of radiation.x
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@jeml im so glad you’re doing well and you have such a positive vibe. And you are blessed with your daughter. Let me know how you get along with the ct and your radiotherapy. How many sessions are you having… ive been told i will have 5 but i wont get to know dates until i go for scan
@naughty_boob oncologist is booking me in for a second heart scan now ive done chemotherapy. I wasnt given any percentages however she said my 1st heart scan was good. Ill not find out until i see them again in March as to any damage caused .
In regards to which way around I had treatments Id have much prefered them to have decided which way around i should have had treatments. In end i just had to go with my gut. In a way im frustrated because as my tumour was removed prior to chemo ive no evidence knowing the chemo actually worked. In regards to shrinkage if you know what i mean . All reassurance i have is that the oncologist said the paclitaxel herceptin zoledronic and letrozole was right for me …
Thank you
thank you
4 was involved, thus ALND was the safest option for me.
What levels were removed? Just 1 and 2 or all 3?
Just wondered if anyone has heard ( apart from myself now) of a person having ER+, her2 +++ IDC that was not treated with herceptin or chemo, just radiotherapy on account of being low grade? Its an odd situation to be in, hopefully in a good way, but only time will tell as despite looking lots, I’ve never seen a case like mine anywhere. The best I can do is cross my fingers.
I believe there was others on this thread but can’t remember who. Might be worth scrolling back, although it could be time consuming.
Maybe someone will see your post and answer direct.
@hlc I was the same as you with the cancer being removed before chemo. They said they had clear margins but didn’t say I was cancer free, whereas others who have chemo first and scans to check if it has shrunk can be told it’s all gone.
I was told chemo /Herceptin afterwards would treat any rogue cancer cells in the blood stream even though I had clear lymph nodes it can be in the blood stream. Because of having chemo and the Herceptin for a year it didn’t feel like I was cancer free until the Herceptin finished and I no longer had regular appointments.
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