Since diagnosis I’ve tried so hard to be positive and only think of getting better, but now I’ve started chemo I’m worrying about it all, the hospital have assured me this is the right way around for me chemo then a mastectomy as I have multiple tumours in my breast and it has spread to the lymph nodes. My cancer is grade 3 and triple negative. Im looking for some reassurance that this has worked for other people, after my first chemo a wk ago I’ve had barely any side effects a little tiredness and pukey first day or so but now I’m back to normal self and I’m scared it isn’t working. Been scaring myself online as well about the triple negative thing I just wish I could go back a year to when I was 31 and had no worries!
Hi Sarah,
My situation is slightly different to yours. I have had a lumpectoy and sentinol node biopsy, and then starting chemo in the next few weeks, although I have read lots of other posts where ladies have had chemo before surgery, so you are not on your own in that sense. I think it’s usually to try and shrink the tumors a bit and stop it spreading. The onc look at every case individually and they will be giving you the treatment they feel is best for you - I know its easier said than done but you have to put your trust in them. Not everyone has really bad se with chemo, but it doesn’t meant it’s not working.
If you have not already joined a chemo thread I am on the June Jewels one, I am similiar in age (33), however they are ladies of all ages and from different parts on the country, and they are great bunch and we support each other, and also have a bit of a giggle.
Take Care
Fate
Hi Sarah
I’m in my 40’s and had a grade 3 tumour (triple Negative) (thought it was 5 cm to start but ended up being 2.6cm after)
My consultant firstly suggested that I should have chemo first to aim to shrink the tumour as apparently both TN and Grade 3 tumours do tend to respond well to chemo. This was with the aim that it would shrink sufficiently to do a lumpectomy. I also understand that this is the more recent way of doing it.
However, at the time I was very stressed and requested an immediate mastectomy as there was no guarantee (of course) that I wouldnt need a mastectomy first. I didnt fancy having the surgery post chemo although to be honest I’m not sure I’d do the same again.
I have since met many women where chemo has been very successful in shrinking tumours significantly and they have had lumpectomys.
Good luck
x
Hi Sarah, I am triple neg, having chemo first. Mine is less than 2cm, so quite small. The reason I was given is sometimes triple neg doesn’t respond to chemo, so no point putting you through 6 sessions if it is not helping.
Don’t worry about the lack of side effects it means your body is coping better better with it than others. It doesn’t mean its not working.
I have had 3 sessions of FEC and will have MRI next week to check it’s working. If it is they will carry on with chemo and operate after, if it’s not working they’ll either change chemo or just operate.
Either way you won’t have the uncertainty of whether the chemo was effective. The good news is j was told by my Onc that grade 3, if they do respond to chemo they respond really well. I had a marker put in mine so if it shrinks to nothing they can still find the aRea to operate on.
Hope that helps a bit.
xx
Also, I know it’s difficult not to, but try not to trawl the internet, there is a lot of old stuff and scaremongering, things have moved on for triple neg, and they do understand it better than even 6 years ago.
If you want to read about it stick to the trusted sites like this one and Macmillan, etc.
Big hugs to you xx
Thanks ladies 
it’s really comforting hearing from other people in the same boat and further on than me, I am getting fec-t but they said they would do tests like MRI after the 3 fec. It just feels like a long time to wait when it could spread elsewhere in the body in that time. The hospital have been really good tho I can’t fault them, things just take time I guess.
Xx
Hi Sarah
I’m another who had chemo first mainly due to the size/position of my tumour. According to my onc its very unusual for tumours to grow during chemo.
In fact the treatment plan for more aggressive types of breast cancer such as inflammatory breast cancer tends to be chemo first.
The advantages of chemo first is that they can see how your tumour responds and also the results may change the extent of surgery needed. Triple negative and grade 3 tumours also generally respond better than hormone positive, low/intermediate grade ones.
My cancer was hormone postive/apparently grade 2 and I had a suprisingly good response to chemo and had a small amount of DCIS after my mastectomy but no invasive disease. I’m also glad I did chemo up front as it enabled me to come to terms with the surgery I needed (I still had to have a mastectomy due to the position of the tumour and the fact that I still had a lump at the end of chemo).
Whatever your decision good luck.
Hi Sarah, I’m in the same position as you at the minute. I’m 38 yrs old triple negative with at least one positive node. Having FEC D 6 cycles planned then surgery. However I think it’s pretty flexible if FEC working possibly surgery then 6 doxetaxel. I have rationalised chemo first as being better for the following reasons.
- If it is node pos, it’s on the move. We need systemic treatment quickly to stop any more of the little buggers moving about our bodies. Of we had mx first then prob waiting 8 to 12 weeks to heal and get chemo.
- We can see what’s working, if FEC isn’t cutting it move to taxol, if you have mx first no way of telling if chemo has helped.
- Somewhere between 20 and 40% of triple neg can get a complete pathological response to chemo. Ie the tumour melts and disappears completely. If this happens your prognosis is excellent at over 90 %.
im stressing a bit a out feeling too good but its only cycle 1 for me and hair will be out soon, that shows its deffo doing its thing. I’m drinking loads, exercising and eating light. Just trying ton be NORMAL, whatever that is anymore. Keep in touch it sounds like we are both in a similar place so maybe can support each other. I’m a palliative care nurse specialist and worked in onc for 8 yrs before that so have a bit of knowledge as well. Xxx chin up xx
Hi Sarah
I was in your exact position a year ago, multiple tumours, TN , grade 3, into lymph nodes. I went through chemo first with no probs, had FEC-T. I had a week of feeling tired and some nausea and then the other two weeks carried on as normal. I even asked were they sure they didn’t want to give me any more just to make certain. I had u/s and MRI half way and then at the end and it showed a very good response. I finished in November and had bilateral mastectomy and lymph node removal in January. When my pathology report came back from the breast/lymph tissue they had removed there wasn’t one cancer cell found. It was kind of good they had done it first then at least I could see that it was working well.
A year on I don’t know where the time has gone, I do have 3 young children who don’t let me think about it much and who don’t let me be anything but positive.
Keep going, you can do this, Vicky.xxx
Hi Sarah
I was in your exact position a year ago, multiple tumours, TN , grade 3, into lymph nodes. I went through chemo first with no probs, had FEC-T. I had a week of feeling tired and some nausea and then the other two weeks carried on as normal. I even asked were they sure they didn’t want to give me any more just to make certain. I had u/s and MRI half way and then at the end and it showed a very good response. I finished in November and had bilateral mastectomy and lymph node removal in January. When my pathology report came back from the breast/lymph tissue they had removed there wasn’t one cancer cell found. It was kind of good they had done it first then at least I could see that it was working well.
A year on I don’t know where the time has gone, I do have 3 young children who don’t let me think about it much and who don’t let me be anything but positive.
Keep going, you can do this, Vicky.xxx
Hi Ladies,
I was only diagnosed last Tuesday but confirmed yesterday:( Grade 3 but not hormone fed apparantly! I am also having 8 sessions of Chemo first before surgery so really hoping it shrinks! I was worried that this would go against me rather than having the lump removed first but your messages have helped 
Dreading the Chemo but to be honest want to get started so i know something is happening and that it is starting to kill this vile disease:( I’m terrified it will spread in this time but trying to stay positive! Sending good luck and wishes to you all xx
Hi girls,
I’m also grade 3 (although not TN) and with secondaries from the start. Docetaxol chemo shrank the tumour by 70% and now I’m going for lumpectomy not the mastectomy required before.
Sarah
Hi Sarah, thats great news! that makes me feel more positive and that this may just happen to me, hopefully Good Luck with the Lumpectomy x
Thankyou all for your lovely encouraging comments I think I was having a panic day and this has really helped me to know I’m not the only one, and at last a major side effect my hair started falling out last week! Im weirdly chuffed and my oh shaved it off, we both like my wee head! i feel like jessie j! went to see the nurse before my chemo no 2 on monday and he thinks my lump under the arm has come down in size by 1/2 cm and the breast a little too, although I’m not convinced the breast has come down as it was swollen after biopsies anyway, but as he said it hasn’t grown so that is positive. After round 2 the slight symptoms of tiredness and queasiness I felt on the first day or so last time have been magnified a little this time I’m much more tired lack of energy and the queasiness has stayed more than 1 day, but if I eat something I feel better so all is good, I’m feeling more positive so I just want to thank you again for your comments xx
Helen how are you doing have you had round 2 yet? Xx
Hi Sarah, very hard to keep following the posts on here so sorry for not getting back sooner. My 2nd FEC is tomorrow morning. Like you I have been pretty lucky with the side effects. My hair was shaved off last Tuesday and most of the rest has now come out itself. I’vSO still been walking and going to the gym etc so trying hard to maintain fitness levels etc. I think my tumour has shrunk, it has flattened and feels less defined. but like you I was so swollen after The biopsies etc outs hard to remember how it felt before. Hope you are doing well. Please send me a message if you want to talk privately etc. xx
Hi ladies, do you know about the facebook group that has been set up for younger ladies diagnosed with breast cancer? It’s got around 600 members who discuss everything from TN to looking after their children during treatment, to getting out the other side! If you’d like to join go to their main page and send them a PM with some info about your dx, your age, where you’re from and how you heard about them. You will find lots of other ladies who are sadly in the same position as you, but all offering support and advice from their own experienes. The link is facebook.com/ManchesterYoungerWomensBreastCancerNetwork if you’re interested.