Hi ladies, I too am having neo-adjuvant chemo and happy to share my experience of treatment so far. My diagnosis is Grade 3 DCIS which is 5cm in size and HER +
I was due to have 3 rounds of FEC then 3 rounds of PTH (pertuzamab, doxetacal, Herceptin) pre op. It is planned that I have DIEP reconstruction after treatment followed by a year on Herceptin and Tamoxifen.
I had a mammogram and ultrasound between cycle 2 and 3. I was disappointed to hear that there was no change after two cycles of FEC and that Switching to PTH immediately was required. You feel like you've gone through the effects of 2 cycles of drugs for nothing. I felt pretty low. Anyway I was told that I should see the situation as positive because knowing the results meant I could switch to something that would work.
My side effects on FEC were a metallic mouth and my tongue was sore. Constipation was pretty bad and nausea. So I was prepared for the 2nd cycle armed with Lactulose and Movicol and we upped my anti-sickness, so that cycle was more bearable. Day 3 and 4 were my worst days, coming off the steroids were to blame, but on Day 5 there was a turnaround thank heavens! I kept a diary of each cycle and wrote down what I could comfortably eat, what my moods were, my energy levels and what I was able to do on each day. That helped me prepare for the following cycle too.
PTH gave me diarrhoea really badly for 9 days straight and fatigue like I've never had before. Apparently it's the Doxcetacel that's responsible for these side effects. To manage the diarrhoea I was prescribed codeine to act as a 'bunging' agent. As a mum of two and needing to run them about codeine was not such a great option when you need to drive, so I took it only at the end of the day to 'act' on my system overnight. I have less of a problem so far with my mouth which is good but food still tastes funny. I had chest pains which really scared me on Day 5, so under the advice from my chemo hotline I popped into hospital to have bloods checked and a CT scan to check heart and lungs. Everyone was great and nothing untoward was found. So again, this was just a symptom of the treatment for me. Due to the diarrhoea it is likely that I'll have a dose reduction on the Doxcetacel by 10-15% to help manage these symptoms but won't affect the treatment. So I'll let you know how that goes.
I am am due for my 2nd cycle of PTH on 29th September with 2 more cycles after that. Like most of you I'm not looking forward to the treatment but each time of going in I know I'm closer to the finish line!
I cant wait to have my operation, as I feel that having my lump physically removed (what's left of it) will rid my body of the cancer completely. Knowing it's still there for the next 9 weeks doesn't fill me with joy but then it's only 9 weeks 🙂
I wish you all the very best with your treatments. Chemo is pretty brutal, but ladies we can get through it!!! xx
Welcome Rosie, Hi everyone
I'm not on here very frequently as I'm finding I cope best by just getting on with as much normal life as I can, but it is nice to not be on the journey alone.
Since I last posted I've had my first chemo and next one is in about a week. First night after chemo was grim but otherwise not too bad. My tumour doesn't seem to have changed much (disappointing) but maybe that's normal. Like others on here my tumour is large, so I'll definitely have (and i want) a mastectomy. I had a lumpectomy on my other breast before starting chemo (tiny lump) and this lump has come back as non-cancerous which I'm grateful for.
Nothing really to report but just wanted to send everyone positive thoughts and good wishes
Hi, rosie14 - yes that seems to be how they do it here as well.
I saw my surgeoin on Friday, and he has agreed to remove the other breast as well as a precautionary measure and reconstruct both, but he won't remove the other one until next year. Not sure if it will be done at the time of the reconstruction or be another operation done separately.
one of the posters above queried if its always about shrinking the cancer. Whilst this is often the aim and might mean an mx is not needed, I know in my case it was more about mopping up any stray cancer cells in my body (as my cancer is very agressive but luckily so far hasnt spread beyond the lymph nodes) and getting that under control before surgery. The treatment might also make getting a clear margin easier, but my cancer is very diffused throughout the whole breast so even if I respond really well to the chemo I know a lumpectemy isn't going to be an option for me. Not really got my head around that but 6/8 chemo cycles still to go so plenty of time to think about it later...
Wow SJB you have been through the mill. I wanted to let you all know that I had neo-adjuvant chemo, was one of (I believe) only two in my monthly thread (May Moonbeams) to have the op after the treatment, and that I had really positive results.
I had my dx in nov 2012 (aged 65) then 4 months hormone threapy (Letrozole). At that point they did MRI scan and everyone was alarmed to find my tumour looked bigger than at dx (they often do on MRI apparently). So off to Chemo I went, with many adventures along the way. I finished mid-September and then battened down the hatches for the operation. I was given a choice between WLE and Mx but I calculated the size of the tumour (huge) in relationship to my bra cup(not a lot bigger) and the answer was pretty obvious. After all the ups and downs of Chemo, the operation (despite the anaesthetic, the admission to hospital with all that entails, the loss of a breast etc) proved to be a comparatively mild event.
During the chemo I didn't notice any change in the size and shape of the tumour, which had not shown up on mammogram and was hard to find on US. I felt at times I was going through chemo for nothing and the MRI after the chemo didn't show much shrinking. The path results after the op said it all: the tumour which had looked so big on the scan had reverted to pre-cancer and the largest malignancy they could find was 6mm in diameter. In other words, the chemo smashed up the tumour. This was a complete vindication of the chemo. It was also a relief to have SNB during the mx and to learn it was clear.
Throughout all this I had the assurance of the multi-disciplinary team that the chemo would stop the cancer in its tracks and with that as the bottom line what I went through was worth it. I also had the unforeseen benefit of all the others in the Moonbeams who had undergone the mx and the radiotherapy and I was able to draw on that when I was recovering! I also was the very last of us to finish chemo and have my op, so although I was the oldest in the group, I was the last to finish! LOL! I hope you all have the same good result as I have had. xxP
I was diagnosed in December and had my first dose of chemo just 11 days later, a week before Christmas! I had a total panic attack about that because the oncologist told me they wouldn't get me in before Christmas, so it would be after, then I had a phone call with an appointment before and it really upset me. I didn't know if I was coming or going.
I had a 5cm tumour with infected lymph nodes and ER+, but HER2-, although the biopsy results didn't all come back until February. I found myself going to hospital every few days through the remainder of December, and had my bone scan and CT scan after my first dose of FEC. It was all so overwhelming.
I was told that my cancer was very aggressive and that they needed to stop it in its tracks, and that going straight into chemo was the best way to achieve this. I've now had 3 cycles of FEC and had my first session of Taxotere last Wednesday. I had an ultrasound scan after the FEC to see what was happening, and my tumour had collapsed like a lump of jelly, although it was still about the same size, just soft and pliable. Also my lymph nodes had significantly reduced in size. My oncologist was very pleased with these results, which was reassuring.
I coped with the FEC quite well. It mainly gave me extreme fatigue, and made me hobble about like an 80 year old (I'm only 48), so I needed lots of rest. I had bad mouth ulcers each cycle and lost some fillings, but never had any nausea at all.
Taxotere though, this is a different beast. I felt fine for a couple of days and even took my son out for lunch 2 days after my chemo last week, but then it hit me over the weekend. I seriously question how older people cope with this. It's evil. I really hope I never have to go through chemo again, or I'll be asking to avoid Taxotere! I hate it.
Now that I only have 2 cycles to go, I've started thinking about my op. I saw my oncologist 2 weeks ago and she said I would see the breast surgeon again after I complete my chemo. I have already got appointments for a mammogram and ultrasound and am waiting for an appointment for another CT scan so they can take a look at everything afterwards. There is an element of doubt about whether the cancer had already spread within my lymphatic system, as some lymph nodes around my body were larger than usual. They want to keep an eye on them, as, if it has spread, this can be managed but not cured. That's worrying me but I'm trying to remain positive. At least it definitely hasn't spread to my organs or bones.
I was told 2 weeks ago that having a double mastectomy does not reduce the risk of the cancer returning, as if it does return, it will be secondary, elsewhere in the body. Breast cancer generally returns or spreads to the bones, lungs or brain. Not nice thoughts. I am concerned about ending up lop sided though, so asked about having a double for cosmetic purposes, to keep a "matching pair" if you like. I am currently a 44DD, and have heard that quite often you end up with the reconstructed breast much smaller than the other. I don't fancy that.
But as I won't see my breast surgeon until after the tests after the chemo, I'm guessing that my consultation with him will be about 2 weeks before the op, so not much time for discussion or understanding. All a bit frightening again. I wish I could talk it through at a more leisurely pace.
The whole experience feels like a rollercoaster, and I really wish I could get off it for a while. I'm tired and worn down now, but instead of looking forward to finishing chemo, I'm worrying about the op. There's no light at the end of the tunnel yet. Still have radiotherapy to face in the autumn, which I'm also dreading, and I know I'm going to need hormone therapy but haven't even been told how long for or when it'll start.
Good to "meet" others on the same sort of journey.
I have a large mass (14 cm x 8 cm) and have been told I'm grade 3 (some lymph node involvement) but still anxiously awaiting results of MRI/CT scans. I will have chemo first for six months and then mastectomy. I'm so encouraged by reading how you girls have seen good shrinkage. Like some of you my breast is hard and slightly out of shape. I had a clear mammogram 6 weeks ago!! ah me. Would love to support you and be in touch on our journeys.
I am a little confused about the purpose of neo-adjuvant chemo. My partner has had 4 chemo so far, 2 to go . Early reports suggest good shrinkage . I thought the purpose was to shrink the tumor to hopefully avoid mastectomybut that doesnt seem to have been the case for most on here ?
Hi Ashley, I also had 6 x fec-t before surgery last year & also had a complete response (lump was 45mm). I still had my lymph nodes removed & all 18 came back clear too! I hope you continue to feel ok & best to get the worst part over with first xx
I am due my 3rd Tax on Friday of 3 x FEC -T. I have been told my surgery is likely to be 3 or 4 weeks after this last chemo although I have not seen the surgeon again yet since the start of chemo.
When diagnosed I was shocked to be told I would be having chemo, I though they would just do a lumpectomy and I would have rads, I was shocked to have chemo at all let alone first. The surgeon advised that having chemo first would hoepfully shrink the lump enough to avoid a mastectomy and would confirm that the chemo was working as due to my age they wanted to treat my whole body.
My lump was 20cm x 10cm no node involement but I think there was a lot of tissue around the lump that they were concerned about treating. I think it was just before cycle 3 that I had another ultrasound and had a clip inserted they advised that the lump had shrunk to 16mm x 10mm. I was concerned that this was only a small reduction however I was advised that they were very happy with the result and that they were confident that the internal makeup of the lump was being killed. The radiologise who did the ultrasound said that they have to put the clip in as often they cannot find the lump after chemo, which sounds great.
I like you just wanted to get the lump out straight away but I have seen a really big change in my breast, at diagnosis it was obvious that there was something wrong, I had a hardness on my breast and it was misshapen, now my breast it soft to the touch and looks normal, I cannot feel the lump at all (although I am sure it is there somewhere). This has been a really big boost for me.
As to the side effects thats great. I don't think for one minute it is because it is not working, you are just one of the lucky ones. I did not suffer with nausea on fec, the main issues for me were strange mouth, no taste buds, constipation (which I urge you to keep in check) and indigestion (if you get this get some meds prescribed as they work wonders). I have been tireder on the Tax but not sure if that is the cumilative effect rather than the different drugs. Just make sure you do not try to keep doing everything you did before, rest more and listen to your body, I definately did too much in the beginning.
i am also on noe-adjuvent chemo, 3fec + 3 tax prior to surgery then rads. i will be getting 3rd fec next wednesday. i know how you feel re tumour still there,however I have been assured this is the best treatment for me and everyone has an individual treatment plan that is best for them,so dont worry too much,
I also had an MRI scan on Mon (after 2nd fec) to check how effective the chemo has been but wont find out results until 15th ( fingers crossed) if tumour has shrunk any.
I am triple negative so wont be going on to hormone drugs.
I am also waiting on results for BCRA1 genetic testing as I have a family history of breast cancer. at the moment the surgery plan is WLE but depending on results this could change.
I finished adjuvant chemo on Sept 3rd. I was ER+, PR+, HER+ and diagnosed last March. I had Ductal, Stage 2, 4.5cm tumor in the right breast with node involvement.
Please don't be worried. Now Ive had surgery and just finished radiotherapy and for me I can see that it surely was the right way round.
Some ladies have had two or more surgeries to get clear margins and the recovery time before you can start chemo can leave stray cancer cells to move around. Chemotherapy shrunk mine from 4.5cm to just 3mm. It was good to see it disapear and helped me through chemo. I had 4 x Fec and 4 x Docetaxol and Herceptin together and I knew that wherever they were trying to hide they were being killed.
I was also told that If those particular drugs in chemo were not working they can change them to those that do as they can see which will work for your particular cancer.
I also had a clot after my op so they had to go back in. I felt quiet unwell and the thought of having chemo after surgery (now I know what you go through) would not be my choice.
I then chose MX with immediate recon with expander implant which i didn't need, (I was told lumpectomy would have been fine), but I do tend to go overboard. They gave me a choice of radiotherapy and I said I wanted that too as it means they have to put in the more expensive expander to cope with rads. I only now have to have a small op in a year to remove the port from the expander making it permanent.
I am so pleased with how it looks too and Ive been offered a lift on the other when I have the port removed.
I really wish you all the best and keep in touch if you have any questions at all. I was the same as you with me being the only regular adjuvant patient on our April Angels thread. Love and prayers. Sandy
I was wondering if anyone else is having neo-adjuvant chemo. I start tomorrow, 8th Jan: 3xEC then 3xTaxotere. Then surgery after that and possibly rads, then hormone therapy x10 years.
There don't seem to be many of us neo-adjuvant folk around. Psychologically it's tough knowing all the women in my monthly chemo thread have had their tumours removed and I am sitting here all tumoured to the hilt like some kind of weirdo!