Chemo before surgery - anyone else?

Hi
I was diagnosed three weeks ago with BC, had CT and bone scan the following day and sentinel node biopsy 10 days ago all of which came back saying that there appears to be no spread. The lump however is 8cm (which scares me) and I am triple negative. Because of my age (40) and the size of my lump they want to do chemo first (4 x FEC plus 4 x Docetaxel/ Taxotere starting on Tuesday) to try and shrink the lump before removing it in Sept, followed by radiotherapy. It’s a bit freaky not having it removed - my obvious reaction is 'get this thing out of me !!

Anyone else been through similar?

Sarah
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Hi Sarah,

Sorry to hear you’ve had to join us, bur YES! I was very similar to you, in fact had been dx at one hospital, who told me I would have surgery first, then chemo. As I was moving, they transfered me to another hospital, who told me they would like to do chemo first then surgery. So I was extremely confused, as I had already mentally ‘lost’ my breast, I wanted it gone. But they explained that doing it this way has many advantages, and having done some research, I agreed. My tumour was 5cm, and I had swollen lymph nodes, and also triple negative, and aged 44.
So I had 4 x EC (thats FEC without the ‘F’!) plus 4 x paclitaxel (similar family to Taxotere/Docetaxel) and have to say the response was fantastic, tumour was down to 2cm after 2nd EC, and I couldn’t feel anything by the 4th lot. When I had my mastectomy in Feb, they only found 1mm of live cancer cells, just a pin-head really, my onc assures me that this is very good for my prognosis. What they are trying to do by giving chemo first is to try and stop the cancer in its tracks. I don’t regret my decision for a second. Also I have heard that triple negs do respond well to chemo.
If you would like to know any more details, give me a shout…but hope that helps a bit.
Good luck
Shannon
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Hi Sarah,

Sorry you had to join us here but i am sure you will get lots of support.

I was diagnosed in Oct last year with a 6cm lump and a lump in lymph nodes in armpit. I was offered chemo first and i felt the same as you in that i wanted rid of it quickly but i asked my oncologist her opinion and she advised chemo first.

I am very glad i did, after the second chemo the lump had shrank dramaticaly and when i came to my mastectomy it been totally killed off as there was no sign of it so the mastectomy was preventative really, also the lymph node tumour had been killed off too. They were planning to give me more chemo after surgery but have said the results have been so good that they no longer feel i need it. will be having radiotherapy though for 4 weeks.

The good thing with chemo first is that they can see if the chemo is having the desired effect and if not it can be changed to another. If the surgery had been done first they have no measure of how the chemo was working (this is what my oncologist told me herself) but saying that there are lots of different ways of treating this disease and it all depends on your team of doctors and what they feel is best for you.

Are they just going to remove the lump in your case? I was told from the start that i would have mastectomy no matter how small the lump became so this was prob due to lymph node involvement in my case.

I hope this is of some help to you.
Keep in touch
Val
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Dear Sarah

Welcome to the forums, where I am sure that you will continue to receive lots of support and information from your fellow forum members. I also wanted to let you know that Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline:

breastcancercare.org.uk//content.php?page_id=7514

You may find our helpline useful to call during this time, they can talk to you about our other support services and also offer support, information and a ‘listening ear’. The number to call is 0808 800 6000 Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm. I hope you find this helpful.

Best wishes
Lucy

Thank you both Shannon and Val. Your comments have helped enormously ! I was starting to feel I was the only one having this order of treatment although I do know that the breast care clinic team here at Frenchay Hospital in Bristol are very forward thinking and they say that chemo first is the way a lot of hospitals will eventually go.

They have said they hope to do a lumpectomy rather than a full mastectomy (but that completely depends on how I respond to the chemo and I’m mentally preparing myself for the worst scenario - losing my breast seems a small price to pay as long as I get through this)

A bit daunted about the chemo, but SO glad to be getting treatment after all the tests and scans.

I hope you are both recovering well after your surgery - would be interested to know whether either of you worked through your treatment and, if so how that went.

Lucy - thank you for the info - this is an amazing website.

Will keep you posted on how it goes
Sarah
xxx

Hi Sarah,

Just to let you know that you’re not alone on your journey. I’m between AC chemo no 2&3 having been dx at end Jan this year. I’m 37, have a 5cm Grade 3 triple negative lump and one of the two nodes removed in SNB was also cancerous. I got the choice of chemo first or surgery first, although the appts they’d set up for me assumed I’d go chemo first (and for the same reasons you quote). It kinda freaked me out having to make that type of decision, but I opted for chemo first on the advice that you’d see if it was working. If surgery was first it would have been mastectomy, but they did say if chemo very effective, a lumpectomy plus rads might be possible. There’s no guarantees, so I’m also assuming it will be mastectomy, but that’s a bit off yet.

As for chemo, I’ve been pleasantly surprised. A bit queezy once, less able to concentrate and a bit more tired than normal, but nothing a few evening naps don’t sort out! My immune system is lower, and with a wee boy in nursery, I’ve had a few colds/sore throats which I’d normally not come down with, but if that’s it, I can’t complain! I work 4days a week, and have managed to continue that so far, although my work have been really supportive and I suspect I will need to be more flexible as my treatment continues.

I know everyone’s different, but don’t worry too much about chemo - at least it’s blasting the little blighters. And here’s hoping you don’t have too many side effects. Good luck with it all,

Ax

Hi again Sarah,

I have not worked at all through my treatment as i get full pay so decided to give myself a break, i know this is not the same for some people but to be honest i have been quite well through all my treatment and probably could have worked through it.

I was terrified of chemo but honestly i felt pretty good all through my 6 sessions, no sickness just a little tired and bad indigestion which was sorted easily.

Take care and hope all goes well for you.
Val
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Hi Sarah,

As to working, it may depend on your job. If you work in a busy social environment, with contact with lots of people, it may not be helpful, as you will be exposed to bugs and germs while your immune system is low, so it may no be advisable to continue. I was the other end of the scale, worked alone a lot, but in a job where I couldn’t be in for a week and off for a week etc, I needed to get long-term cover. Work were great and kept me on full pay, I’m returning back after Easter, working from home to begin with.

For chemo, it seems everyone reacts differently. On EC I did feel nauseous, but was never sick, as Val said, bit of indegestion and tiredness. I didn’t get any of that with paclitaxel though, joint twinges and pains a few days after treatment, which lasted a day or so, but was never bad enough to need painkillers. I was told I would lose my hair, so shaved my head a few days after my first EC, made me feel I was taking a bit of control, and have never felt bad about that aspect to be honest. I know some ladies do struggle with it though. On the plus side, you won’t be needing to shave your legs or underarms for a while!

Take care
Shannon
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Thanks a lot girls - feel a lot more positive about the chemo ! My job is mainly office based and I can also work from home if needed so there’s quite a bit of flexibility. I work for a charity and actually really love my job ( I know that’s unusual !) so wouldn’t want to give up completely - it’ll just be a great excuse to pass the really stressful parts of it to someone else !

Sarah
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hi sarah
i had chemo first to shrink my tumour that was 10.5cm.i went onto the neo tango trial and my tumour shrunk to 2.5cm.so having the chemo first was definately the best result for me.
good luck
maria

Hi Sarah

I also had chemo first, then surgery (I’m recovering now) and have radiotherapy and tamoxifen to look forward to! I wasn’t given a choice as the Drs wanted to see if the tumours shrunk first and ‘because of your age’, I’m 41. It turned out to be a good choice as the main tumour did not immediately shrink, it took about 2 doses to start getting softer and after that it did reduce but never completely went. The smaller tumour did disappear.

I too work for a charity 15 hours a week and found working really good therapy. But found I was able to do less as the chemo treatment went on ( 4 x EC & 4 x Taxotere).

take care

Pauline

Hi Maria & Pauline

The more I hear, the more it all makes sense having chemo first. Most of al being the fact that they can actually see whether it’s working and adjust the drugs if not. REALLY encouraging to hear that yours shrunk so much Maria - Everyone else seems to talk of their tumors in millimetres and mine is 8cm which has been worrying me - but thank you so much for the encouraging info.

Hope you are both recovering well
Sarah
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hya guys

At last i’ve found somebody going through the same procedure of treatment as me! was diagnosed 12th march and had first FEC on 20th. same again but 3 of each, surgery then radiotherapy. Started yesterday with immune boositing injections, but proved to be allergic so now off them. it seems Maidstone hopsiptal - despite the adverse publicity earlier in the year - are magnificent and very forward thinking too. So feel privileged than hard done by.

Good luck to you Sarah as the timing sounds very similar to mine.

jayne

Hi everyone

I am having my chemo first too (FEC x4 & Tax x4).

I have IBC so the option for surgery first wasn’t there, especially as my mass was 13cm, and literally groeing daily.

I wanted the mass out, like other people have said, but now realise that it realy wasn’t the best option for the best outcome. In honesty now I’ve got my head around it, I’m OK, but it was hard.

Good luck to you all, Rebecca

Hi Sarah and all the others who have contributed to this thread.

I too am having neo-adjuvent chemo and I understand your worries and fears. I’m 43, was dx in December '07, 5cm triple negative tumour. So far I’ve had 4 AC and one Taxotere (3more to go). The AC wasn’t too bad, apart having a hung-over feeling for a few days. The Tax has left me feeling exhausted but I’m pleased to report that I haven’t had any nausea. The tumour became a lot softer after the first two chemos and after four AC’s my onc reckons that she can no longer feel it. They won’t be able to say what kind of surgery I’ll be having until I’ve had another mammogram/scan.

I was advised not to work whilst having chemo as I’m a teacher and would be prone to infection, plus it’s a stressful job and is not the kind of work that you can dip in and out of, so I think I made the right decision to take some time out.

Good luck to everyone with their treatment. Look after yourselves. Liza x

hi sarah, hello to a fellow yokel! !i live in weston super mare and had rads at bristol oncology center, i too had to have chemo before and after my mastectomy and it shrunk the tumor considerably it was previosly 4 cm and by op dats was only 1 cm .i also had chemo after as a mop up .im now 2 tys on and so far ok.hope all goes well .do you see dcr tomlinson? shes lovely! take care lynn xx

This is obviously the thread for ‘ladies of a certain lump size !’ I think I mentioned before that all the posts I had read previously were all talking in millimetres instead of cms and I was starting to get paranoid.

Lynn - I see Dr Braybrook who also seems really nice and the breast care nurses are lovely. Do you go to any of the local support groups? I think I might give it a try but not entirely sure it’s my thing (although I’m really getting into this online support so who knows!)

Hope you are all feeling OK today - I’ve had my best day today and felt pretty much back to normal although quite tired after a few days back at work. Seem to get quite breathless when Im walking as well - I need to learn to walk a little slower.

Take care all
Sarah
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hi sarah
i had planned to work through chemo but once i started it i also became quite breathless and decided to stop work.next time u go for chemo make sure u mention the breathlessness to the onc.i was also very blue around my mouth so they adjusted my chemo and this stopped,
hello to everyone else too. i hope u r all coping well with yr treatment.

best wishes
maria

Hi Sarah
I agree, the feeling of wanting rid of it is the overriding instinct…and I was the same. But to see the progress as you go along and feel the difference in the lump is so psycologically beneficial too.

I had 3xFEC and 3xTAX last summer/autumn. Followed by a bi-lat mastectomy in November, then Rads Jan-Feb. Cannot believe it is all over now (and no more drugs as I am triple negative too).

I think the size very much determines the treatment plan (as well as nodes, spread etc) and mine shrunk from 5.3cm to 1.2cm - so very good result.

Wishing you well as you start your treatment, you will be surprised how much you can cope with and also how quickly the time goes.

Ali
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Thanks for the advice and encouragement - much appreciated !

Sarah
xxx