Amazing news 
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I’ve been following along on this thread for a while and have found it invaluable though haven’t actually posted much (I think I’m still in denial that this is happening…).
Had some disappointing news on Friday which has sent me spiralling. I have two tumours (er and pr neg, her2 pos), stage 2 grade 3, and have had two cycles of EC so far (due one more, then switch to docetaxel and phesgo x3, followed by surgery and then whatever is needed after that).
On Friday I had an ultrasound at which I discovered that one of the tumours has shrunk considerably but the other one hasn’t shrunk at all.
I seem to keep reading messages on various threads on here where tumours have shrunk, and I don’t think I’ve come across anyone whose ultrasound has shown no shrinkage. I hate the cancer narrative around battles etc, but actually am now feeling that the cancer is winning, as even this strong chemotherapy isn’t able to fight it. I also feel like all the crappiness of the first two cycles wasn’t worth it. My mind is going to some very dark places, just like that awful waiting period after the diagnosis.
I am meeting the oncologist tomorrow (cycle 3 of EC is due on Friday), so i expect we’ll discuss the result then and I’ll get her expert view. In the meantime I just wondered whether any of the her2 buddies on this thread have been in a similar position/any words of wisdom from you wonderful women?
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Hi @hedgehog , Thank goodness you can ask your questions tomorrow but waiting again is horrible. I don’t have that specific experience as I was surgery first…however keep thinking about the shrinkage achieved on the one tumour, that’s got to be progress. Wait and see exactly what they say about the other and the bigger picture and plan…my understanding is that ultrasound gives some indication of tumour size but accuracy may depend on location etc so you need more detail - Hopefully someone will say if Im wrong on that. Of course you are going to be worried, we all would be and worry doesn’t have an off switch and the better news gets lost ( been there!) Fingers crossed you get clarity tomorrow, its tough going into these appointments when your brain feels scrambled already, take someone or your pen and notepad, whatever works for you and get the full picture. Good luck, whatever they say tomorrow these ladies are here.
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Hi @hedgehog mine didn’t shrink at all during some of my chemo which was disappointing to hear. The nurse I spoke with said that staying the same was also good and that can’t see from the ultrasound if the mass is live cancer cells or dead ones. I did have some residual cancer after chemo/surgery, so I had go have Kadcyla instead of continuing with Phesgo. It was a bit of a blow to be honest because I was expecting to be done long ago. I finished Kadcyla two weeks ago and had a clear MRI scan a few weeks ago, so it seems to have worked well so far!
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Hi @hedgehog ,
Sorry you’re feeling this way! As @kartoffel said the ultrasound doesn’t necessarily determine whether the tumour size is full of live cancer cells or dead ones (or so I was told anyway!) but also you’ve only had 2 cycles so there could be a lot more shrinkage to happen!
I had 4x EC and 4x docetaxel with phesgo and I had some shrinkage but it didn’t disappear. After surgery I still had 15mm residual I think but the ultrasounds made it seem like I still had 4cm after 5 cycles.
I know it feels like it’s not worth it, however it is doing its job, and whatever is left they’ll get in surgery!
Hope your oncologist can offer some reassurance, good luck for the next few cycles 🫶🏻
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Hi Hedgehog i am her2+ only with DCIS and one invasive tumour which on the ultrasound and MRI showed only moderate shrinking which really worried me. The measurements were also very different on the ultrasound to the MRI which they said could have been due to the DCIS. I had a SMX 4 weeks ago and got my path results last week and there was 1.4mm of live cancer in what they removed so although it’s looking like I will be going onto Kadcyla I was expecting them to tell me the remaining tumour was somewhere between 1.3 cm to 2.4cm which is what the scans were showing.
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Hi @marionse25
I swapped from Letrozole to Exemestane and feel better, it’s not perfect by any means. But I don’t ache as much, I still have hot flushes and take Oxybutynin to reduce them.
I would be careful reading too much about what feeds cancer when it is provided by one person who is not a doctor. The lady is in America and has a mathematics/science degree but doesn’t say exactly what it is. I would rather listen to Dr Liz O’Riordan or a charity such as Penny Brohn who offer nutrition advice from qualified nutrionist Kim Wilcox. The charity and Dr Liz are also PIF ticked which shows that they have to back up any information they provide. See below.
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Woo Hoo 
Great news.
@hasnae87 so sorry to hear you are struggling post surgery. I think most have said it was easier than chemo but not saying it was ‘easy’. Risk of infection and poor healing is always something that can happen. I hope your temperature reduces soon but if it doesn’t please call for help as you may need intravenous antibiotics rather than tablets.
@boobitis I’ve not heard of the specific trial but Google said it test for cancer cells in bloodstream before surgery and follow up. Waiting is so hard but they will get the best treatment for you with all the facts.
Take care all
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Hi @hedgehog immediate caveat is that I was surgery first so no direct experiences to share but:
- I was told when first diagnosed and my team were debating whether to go surgery or chemo first that if it was chemo first then the aim would be mostly to help surgery in terms of taking as little as possible and still getting clear margins. I.e (or so I internalised it) the surgery is still the main part of the process in getting rid of The Thing, chemo is the belt-and-braces (either before surgery to support the surgery, after surgery to mop up any undetectable bits still floating around). So if you’re showing any response pre-surgery (and sounds like you are) then that sounds like A Win to me…
- I was also told that ultrasound wasn’t sufficient to fully identify the size/position of tumour and so I had to have an MRI as well. Coupled with @sooz1 and @kartoffel’s points about dead cells post chemo being indistinguishable on the scan, that also rings bells with what they said to me about not knowing for sure whether they’d got it all until they could inspect the actual mass that came out in surgery - I guess there’s only so much that they can know from the outside.
Which I think is mostly positive, but does mean more waiting and hoping, which is pants. So the main thing to say is to offer a virtual hug as you keep on keeping on 
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Hi @carrie5 thanks lovely:) yes, surgery first in 2 or 3 weeks deoending on the oncologist consultation. I cannot believe I am on investigating/waiting route for a month now🙈.
Distraction is a key, however it’s such a crazy feeling to have a summer and not hsve a summer if you know what I mean. Lots of love
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Hi @naughty_boob yes it’s testing ct DNA prior and post surgery. Aldo 6 and 12 months post. I think it is similar to this American Signatera test. Not sure what deescalario means in my case but the BN said that due to early stage, small size and clear lymph node they are looking at checking whether they can treat me with Phesgo, hormonal and radio and light or no chemo. It’s all still a wsiting and a maybe until post surgery pathology report. I am just scared it keeps growing and eating me up
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Hi @knock-knock Fingers crossed! This trial is apparently in place for 6 years now, I am sorry yours did not bring anything after all, but still good to try different approaches. Chemo or none I will get through it there is no other way and I will keep you posted, I just wanna see if it’s a very niche trial and what outcomes women had going on it xxx
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Thank you so much @anb1 @kartoffel @sooz1 @knock-knock @carrie5 (hope I haven’t missed anyone who’s kindly replied to my worries about non-shrinkage of tumour). You’ve really helped to get me out of the spiralling thoughts, much appreciated.
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You not alone thinking it’s still growing while waiting for treatment plan. I think we’ve all been there. I remember hearing Dr Liz O’Riordan saying that some tumours and cancer cells can be around for years before they are found and generally doesn’t grow as quickly as we might think.
Keep sharing and maybe call the BCN nurses.
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Hello buddies
Lots happening on here while I’ve been away in Margate for the weekend and as usual, everyone does an incredible job of supporting each other. I got the news just before I left on Friday that the patch on my chest does not look like cancer but that if it isn’t shrinking in a week I would be referred to the dermatologist. I also have no signs of malignancy in my MRI and mammograms. And so I feel I can relax. It was great to be at Dreamland on Friday night at the Jam/Ocean Colour Scene/Roger Daltrey concert just dancing away and feeling carefree. I wanted to share this because of all those of you who are in the midst of the nightmare. The bad times do pass and when we get those moments where we can really stop worrying and celebrate, then we must take them and wring the bloody life out of them. We have all been on the receiving end of that life-changing sentence ‘You have breast cancer’ and sure, we never really go back to life as we knew it, but the spring rains do come again and we can sure as hell learn to dance in them.
I feel rather remiss not answering people more individually tonight but I have to unpack and get sorted for work tomorrow. Please know that I am thinking of everyone who is going through tough times at present and sending you hugs, love and strength.
Love to all as ever,
Salbert
xx
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Great news about your scans and that you can be referred to dermatology if the patch in your chest doesn’t change.
Sounds like you had a fabulous weekend
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Hi @hedgehog
I had 4 cycles of TCHP before having the repeat USS and mammogram.
Now this sounds line the start if a joke but I didn’t walk into a bar! There was a radiologist, a surgeon and an oncologist. The radiologist informed me that only the pathology results would reveal if the treatment had reduced ‘it.’ The breast surgeon was more positive when he looked a his computer screen but didn’t elaborate and the oncologist said it hadn’t increased in size. They were all correct
As it hadn’t got bigger after 4 cycles then I took that as a win. The pathology results after my double mastectomy informed us all that the chemo and targeted therapy had done what it was supposed to do.
I’m thankful that it worked for me and I’m in awe that my 56 year old body got me through 5 months of chemo, covid then surgery after I had felt that it had let me down. I know we all get something but I never thought I’d get this. It came out of nowhere as I had no physical signs of it. Thank goodness for routine mammograms and the diligence of the two radiologists who looked at my scans and decided that I should be called back for second stage breast screening.
I’m not a fighting talk fan either. I opted to accept what was coming and walk alongside it. My route kept changing as results from investigations came in. I followed the path the health care professionals led me down as they knew the best route as they’d trod it countless times before. My family and close friends accompanied me. Sadly no bench slapping along the way like @salbert did. This is because the only bench I passed was filled with the hospital staff fagging and I’d have looked bonkers walking up to it to give it slap! I slapped my arse instead! X
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Probably won’t see this before tomorrow (I’m up late as per usual) but until your appointment I’d focus on it not getting bigger. It absolutely sucks when you don’t see as much shrinkage as you want (up until my last surgeon appointment I was still trying to shake the overly-optimistic thoughts that maybe I’d go in and it’d ALL be gone and I wouldn’t need any surgery after all) but better it doesn’t change size than increases and as others have said who knows how damaged those cells in it even are.
It’s most definitely not a waste of time cos hopefully all that toxic sludge we have to have injected has absolutely wrecked what remains in there, even if it’s on its last legs. If they can get a good margin that’s the main thing. And if you’re still early in your chemo plan then please don’t give up the faith. The other one is being battered/shrunk, hopefully the second one is going to get equally annihilated during your remaining treatments.
I was told from the off and for ages duting I’d need a full mastectomy and it turned out the last couple of treatments zapped that sucker and while a teeny bit remained it shrank enough to switch to a lumpectomy instead, nobody thought that was going to happen (least of all me). Your body may surprise you, give her time. She’s not finished doing what she’s doing yet.
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Fantastic news @gromit12!! So happy for you 
xx
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