Neoadjuvant Chemo

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1

Hi Everyone,

This site has been such a help to me since I was diagnosed last March.
So many wise, articulate and funny ladies out there!

I’m hoping to start a thread for anyone who has a treatment plan which includes chemo before surgery.

I have seen a few postings on this site on the subject, and although I’m happy having this treatment & feel fairly well informed, I am always wondering why it seems to me to be relatively uncommon. Anyone else out there?

Are you having to make a decision about which type of surgery you will have?
And how do you feel about the long wait before surgery?
Has the chemo been successful? & what happens if it doesn’t quite go to plan?
Any thoughts on specifics like interim ultrasounds, marker clips, etc.?
Has anyone achieved a ‘complete response’?

The aim of the chemo in my case is to allow me to have breast conserving surgery.
Rads & hormone therapy to follow.

I am now nearing the end of 6 months / 8 rounds of chemo (finally!) and would love to be of help to anyone who is getting started, or to hear from anyone who is further along the way…

Best wishes to all,

Lomalinda

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Hi Lornalinda

I’m having chemo before surgery. Like you everyone I’ve talked to seems to have had surgery first and then chemo etc. I think a lot depends on the surgeon. The way it has been explained to me is that as I come under the younger category it means when I have surgery the tumour will have shrunk so there won’t be so much of the breast to cut away. Hopefully I will just have a lumpectomy. I also had a node biopsy before chemo started.

I don’t worry about the wait for surgery but do wonder what happens if the chemo doesn’t work.

I’ve just completed my first cycle of FEC - 5 more to go and had a marker clip put in today. Second cycle starts on Monday.

I’ve found these forums very informative and helpful - especially hearing from people like yourself who have been through the same experiences

3

Hi Both

I’m also having chemo before surgery although I’m well behind Lomalinda - had FEC no.3 (out of 6) yesterday. After surgery I’ve been told I’ll also have radiotherapy followed by Tamoxifen for 5yrs. The impression I’ve had is that this is more common for younger women with bigger tumours but I could be wrong. I’m 40 and lump was 5 x 2.5cm, grade 2 and hormone receptive.

I had a sentinal node biopsy prior to chemo with a 3/9 node result but this didn’t make any difference to their decision.

I’m quite happy to have the chemo first as I would prefer to have a lumpectomy rather than mascetomy if it shrinks enough. I’ve an ultraound booked for the 18th Sept to see how it’s going but I did have the lump manually measured with calipers just before FEC no.2 and it seemed to have shrink quite abit (although I wasn’t that convinced with the accuracy of this method!!)

I’ve not heard the term “complete response” before - what exactly does it refer to?

I too would be interested to know of anyone’s experiences when further down the road and what happens if the chemo is not effective.

Best Wishes
Sarah

4

Hi Ladies,

I’m also a neoadjuvant chemo gal, but am on the last leg of treatment, now in third week of five weeks rads.

I was dx jan 08 at age 37, did 6 AC chemo Feb - May, surgery July and now rads. I had 5cm lump, grade 3, triple neg. Was given choice of chemo first or not, but they’d planned treatments assuming I chose chemo first, and onc said it was no contest after decision made! Apart from possibility of less surgery, they also indicated you could see whether chemo is working or not, which you don’t see as well if surgery first. My initial concern was waiting so long to get cancer out of me, but BC nurse pointed out that treatment or attack on Big C started when I got first chemo, not when it was surgically removed. So that reassured me, and actually the time to get my head around everything helped before getting surgery.

I had SNB with 1/2 nodes positive in Feb. Then chemo; was told if AC not effective would change to 4AC, 4Tax, but halfway through lump had reduced to just over 2cm. so carried on with AC. Had several u/s which showed it was reducing, and marker inserted before surgery as remaining lump a funny shape. Not a complete response, and path report showed still 2.5cm cancer (even though latest u/s showed circa 1.5cm), but downgraded to grade 2 (poss as a result of chemo) and no further nodes affected.

Reduction in size of lump meant that I avoided mastectomy which would have been necessary had I had surgery first, but still had choice at surgery - either normal lumpectomy, but due to size of removal, would be left with large indentation; or removal and “reshape” with other breast reduction. I chose the latter after much deliberation, and am pleased with outcome. Surgery wasn’t as bad as expected and actually felt quite good about it as I’d improved in energy etc being 5-6 wks post chemo! Rads also ok so far, although I’m lucky in I work near hospital so no big travelling time for me.

Think that answers all the questions, but if you have any others, just ask!! Good luck with it all folks; it is a slog and you’ll have some down days, but take it a step at a time and you will get there! Look after yourselves,
Ax

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Hi Lomalinda

Thanks for pointing me this way. I am just starting the journey with 1st chemo (1 of 6 FEC) on 17 Sept and believe the chemo was offered to me first also for breast conserving surgery. I had noticed that neoadjuvant chemo is relatively uncommon. Could it be that a lot of women choose surgery first because they don’t like the thought of the tumour still being there? I know a friend who elected to have a mastectomy even though she didn’t necessarily need to.

I haven’t even thought about the type of surgery I will have due to the unknown outcome of chemo. I am fully expecting there to be changes to my treatment as time goes on. I’m sure it will be a rollercoaster ride.

What type of chemo are you having? Have you suffered any hair loss? Has the chemo made any difference to the size? Also, are you deciding on what type of surgery to have and if so what are your options?

Apologies for all the questions.

Sunny1
xx

6

Hello Lomalinda and all

I was diagnosed early in June, with an 8cm tumour which was aggessive, grade 3. I was told that chemo first was the best option to allow shrinkage of the tumour and because surgery at that time wasn’t a good choice. My nodes were not checked then either, so I don’t know whether any are affected.

So far I have had 4 / 8 Taxotere and 2 of herceptin as my cancer is HER+. I was told that I would still need a mastectomy because of the calcification in the breast, even after chemo. Following the 3rd course of chemo, my tumour had shrunk by half although I am not sure how they could really tell as the Onc only used some sort of ruler to measure it. My blood tumour marker is 23, but again as this was not checked in the beginning with diagnosis I don’t know what it was.

I will need rads after the mastectomy and will continue with Herceptin for a year.

I am having my treatment in France, and am currently changing treatment to a centre of excellence which is further away to travel to, but is meant to be one of the best hospitals in my part of France for treatment of cancer. I thought I was the only one having neoadjuvant chemo, until I started to research on this site and ask advice.

Can I just ask what a marker clip is please?

Good luck to everyone xx

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I had chemo first with a view to saving my breast (I was 34 at dx last Nov) which was one of my priorities when I was first dx. I think there are pros and cons of both options.

For me, I found the chemo more bearable because I could physically feel the changes to the tumour so I knew it was working so it seemed worth putting myself through it. Unfortunately, I still had to have a mastectomy as my tumour fragmented (calcifications) rather than shrunk in one piece.

When I got my results, I was glad I was mentally prepared (as far as you can be) for a mx as there was a second lump which was DCIS, approx 10cm - I assume if it had only been a lumpectomy, they may have found this lump and had to change to plan B anyway. I had no nodes involved which is probably because the chemo had killed off any strays - another plus side to chemo first that it gets to work on your whole body straight away.

I also had 15 rads and am now half way through Herceptin.

My thoughts are that the oncologists are the experts and if neo-adjuvant chemo is their recommendation, they know more than I do, so go with it. Hope this helps.

Good luck all.

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Hello Lomalinda

I thought I’d add my experience as well:
I was diagnosed about a year ago: IDC grade 3, 4cm. Lmphnodes not checked but a 2cm mass was obvious at scan and PET and clearly palpable.

I was immediately advised to have chemo first for the 3 reasons listed by others:
check efficacy of chemo
no waiting around for surgery and recovery period
reduce lump.

I was always checked manually but it was obvious it was working. I had 12 weekly Taxol + 4 FEC. Throughout I also had weekly herceptin and lapatinib in tablets. I was in a clinical study. By the end of treatment the umour wasn’t palpable anymore and scan/mammogram/MRI were all negaive.
I finally had a lumpectomy with Sentinel Lymphnode biopsy (they took 4 out), pathology report of lymphnodes and lump all negative. I have had a complete response. I then had 6 weeks radiotherapy, which I finished a monh ago.

My cancer was very aggressive with a KI67 of 90%(anything over 20 is considered high)! This probably explains why it responded so well, as my oncologis had said that the more aggressive cancers tend to respond better to chemo.

I am very happy that I could see the positive effects of chemo and know for sure that all the pain had not been for nothing. I know I have been extremely lucky with the results and I’m jus so glad I was in a position to know for sure that there was nothing left.

I am finishing my last few herceptins and am looking forward to having a long break from hospital afer that!

Bes of luck to all of you who are still having treatment, I wich everyone could have the same outcome as me!

take care

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Hi Ladies,

It’s a shame we have to meet under these circumstances,
but I have to say that I feel a renewed strength and optimism hearing from everyone here. This is especially good as I steel myself for my last chemo - which I will be having mid September.

Iah60
Best wishes for Monday. That’s great that they have put your marker in nice and early.

Sunny1
Looks like you might get some FEC tips here. I’m going to do a separate post for your chemo questions . Probably better if I post on your original thread in the chemo section.

Peacock
As you might have gathered from Scotta’s post, a marker clip is a little (titanium?) tag which is inserted whilst aided by ultrasound to mark where the tumour is. This helps in planning surgery if the tumour size and location is the main concern of the surgery.

Imi99

(clinical) Complete response is when the tumour is no longer palpable. Webmum is obviously the poster child for this one! I think it is: no response, partial response, or complete response. This obviously has implications for long term prognosis. Anyone have data on this?

Scotta, Shazza, and Webmum,

Thank you so much for sharing your experiences. I was really hoping to hear from ladies who are further along the way. It’s great to finally be able to compare treatment notes with others!

I can remember being so shocked when they told me my order of treatment, but once I calmed down and thought it through, it really made sense and I could see the benefits. I think we are all very fortunate!

The thing I’m finding hard at the moment is that until I have the post chemo MRI, I can’t discuss my surgery plans… I am hoping for a lumpectomy, though they haven’t as yet used this exact word with me, just WLE.
I am trying to keep positive and realistic at the same time. Scotta’s post is especially interesting since there is very little “real life” info out there about lumpectomies.

Well, I promise to be a bit more brief in the future, but it was just so good to hear from you all!

Lomalinda

XXX

Here’s my profile:

I’m 45
dx: March 2008
Type: IDC, Grade 3, ER+ PR+ HR2 -
Size: 1.9cm , appears to have reduced to 8 x 9 mm after 4 chemos.
Sentinel Node Biopsy, nodes clear
Chemo: 4 x Epirubicin, 4 x Docetaxel
Planned: Breast conserving surgery, Rads. (3 weeks?), Tamoxifen 5 yrs.

Other things:

MRI scan before SNB
2 ultrasounds (monitoring),
Marker clip inserted on completion of Epirubicin cycles (1/2 way).
Planned: MRI before surgery.

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Hello Lomalinda

I thought you might find this article interesting: google this title : Prognostic Value of Initial Clinical Disease Stage After Achieving Pathological Complete Response. You’ll find plenty of info there.

It is very encouraging reading, especially after a not so good initial diagnosis!

I wish the best of luck with your next chemo and hope you achieve great results at the end. It’s a cliche, but there IS light at the end of the tunnel and you will get there.

Take care all of you!

Webmum

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Hi Lomalinda,
I am 48 now I was dx in July 07 and had a 1.7 grade 3 tumour, I had option for chemo first and did research, cochrane institute had good summary of research that good for under 50’s and being used more and more. I decided as a grade 3 Id rather get the chemo in me quickly. I had 4 EC and 4 Tax it srunk to 0.6 virtually had gone, following those I had lumpectomy(WLE) and then 2nd op for wider margins and full lymph clearance, 1/16 were affected. Unfortunately I developed a seroma and had to go and have it drained twice a week then I got an infection so had a 3rd op, to clear infection and seroma. This was successful. I was so pleased to have chemo first because If I had had ops first it could of been 3 months until I had chemo. I had a clear mammogram in July then I had rads 25 and 5 boosters and am now on Tamoxifen for 5 years.
I am still abit tired from all treatment so am not back at work yet, but am feeling much more like me now.
I have weird new hair, it is very curly and a different colour, but great to have hair again.

Ask anything you want to know, if I can help I will,
Take care
Dawn X

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Hi Webmum,

Thanks for the article!

Now, I hadn’t seen that one before and I’ve been looking! There are lots of links on that page to others too…

Will be making large pot of tea before I start wading in to them all!

2 questions for you:

Surgery after complete response: What are they actually removing (aside from the clip!) when there is a complete response?

What is the K167 you refer to? I’ve only just asked for my pathology report, don’t know why I didn’t do so before…

Thanks for the pep talk too. This is the point where it seems a bit endless!

DawnCr

Hi! Thanks to you too!

Interesting that you had a v. similar size and grade to mine and what you manage to achieve.
Is that 0.6mm? If so, that’s tiny!

Sorry to hear that you had such a tussle after the first op; my best chemo pal had similar seroma / infection problems and it is NO fun. You sound very positive now though, like everyone here.

Same chemo as me too… Did your hair come back before you finished the TAX? I have a baby bird look at the moment!

Best wishes to all, esp. Iah60 with your latest FEC.

Lomalinda

XXX

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Hi,
Yes my hair started to grow back on taxotere, I was abit worried maybe it was not working but they said and on here it seems that quite a few peoples hair starts to grow back on the tax,but I lost my eyebrows and eyelashes on the tax and not on the EC, it all so different for different people.
Sorry it was virtually just coil that they removed and a slight bit left so not much to measure really. So def a good result for me.
I am interested in K167 is too so awaiting the reply, I havent googled article that was recommended but will do soon.

Hope next chemo goes ok you are nearly there!!!
Take care
Dawn X

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Hi Lomalinda

Thanks for your good wishes - unfortunately was really sick after this bout and didn’t feel well at all. hopefully they can sort the drugs out for next time. Also despite using a cold cap my hair seems to be coming out more than I thought so don’t know whether to continue.

Godd luck with your final rounds.

Lynn

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Hi Lynn,

So sorry to hear that you had a bad time of it on this round. I hope that they will sort something out so that you don’t have to go on like that. My chemo pal had some big oral capsules to take on the day & it did help a lot. Are you going to continue with the cold cap? I was too chicken to try it.

Dawn,

Hi. I was hoping to get info on this K167 thing when I went to my clinic yesterday.
But as they forgot for the second time to have my full path report for me, I forgot to ask about it!

Best to everyone,

Lomalinda

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Hi everyone,

was diag, in june 08, am 52, inv. duct. grade 3, 4 cms,
am on 4 tac, 4 tax… op, rads…
my 4th tac is on 25th sept.
b4 3rd tac lump measured (with pinchers) ouch, and not really seems to be shrinking
therefore onc will check again b4 4th and maybe start me on tax earlier
I haavnt been brilliant on tac, esp. the 1st week after each, difficult to eat, drink and spent much of it in bed but pick up in week 2/3 ready to be got at again!!!
I have read many posts on tax and if I’m honest am quite ‘scared’ about its side effects. Yes we are all different and maybe it wont be too bad, time only will tell. I dont know if the onc starts tax earlier whether I will just have the 4 or 5 to make up for 1 less tac.
I have lost my hair mostly, but unlike some I didnt shave it off so have a 2 inch downy covering!!! I have an nhs wig that doesnt look too bad but I save it for when I have to go out!!! Cried when hair was falling like autumn leaves, but hey, spring always follows…just got to get through this damn winter!!!
It takes a few weeks to get used to diag. and accept it. I feel like Im floating down river, stopping off every 3 weeks for treatment, then floating down for next one, soon I will reach the end of the bank where I dont have to stop off anymore and my… wont that sunshine feel so good (in the shade of course…)

take care all,
hugs and heartfelt good wishes every step of the way,
Chris x

17

Hi everyone,

was diag, in june 08, am 52, inv. duct. grade 3, 4 cms,
am on 4 tac, 4 tax… op, rads…
my 4th tac is on 25th sept.
b4 3rd tac lump measured (with pinchers) ouch, and not really seems to be shrinking
therefore onc will check again b4 4th and maybe start me on tax earlier
I haavnt been brilliant on tac, esp. the 1st week after each, difficult to eat, drink and spent much of it in bed but pick up in week 2/3 ready to be got at again!!!
I have read many posts on tax and if I’m honest am quite ‘scared’ about its side effects. Yes we are all different and maybe it wont be too bad, time only will tell. I dont know if the onc starts tax earlier whether I will just have the 4 or 5 to make up for 1 less tac.
I have lost my hair mostly, but unlike some I didnt shave it off so have a 2 inch downy covering!!! I have an nhs wig that doesnt look too bad but I save it for when I have to go out!!! Cried when hair was falling like autumn leaves, but hey, spring always follows…just got to get through this damn winter!!!
It takes a few weeks to get used to diag. and accept it. I feel like Im floating down river, stopping off every 3 weeks for treatment, then floating down for next one, soon I will reach the end of the bank where I dont have to stop off anymore and my… wont that sunshine feel so good (in the shade of course…)

take care all,
hugs and heartfelt good wishes every step of the way,
Chris x

18

Hi Lomalinda

Am thinking about giving up cold cap - it is uncomfortable at first and adds so much time to treatment and if its not working its not worth it. I got given a wig brochure this week so might have a look into that. Got another week or so to decide. Think I need to start anti sickness tablets on the day which might help.

Take care

Lynn

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Hi Lynn,

Yeah, the cold cap is a big effort if you don’t get the results you hope for.
Have to say that I’ve about had it with the headscarf thing… I had a strip of fringe which I used tuck in across the front, but I just can’t be bothered anymore! I bought a nice monofilament wig ages ago & I think I might start wearing it now, but it’ll need trip to the hairdresser’s first for fine tuning!

Hi Chris!,

Nice to hear from you. I love your river analogy; mine was 8 beads on a bar sliding across, one treatment at a time. Though the way I feel now it’s more like an 8 round boxing match! It’s good to have something to visualise, especially when you’re waiting around on the ward.

I hope the switch to TAX gets better results…. One of my oncs said that sometimes it’s the later rounds that make more progress. On the 25th you’ll be halfway through!

My last one is tomorrow, I am so looking forward to it I may not be able to sleep tonight. No wait, that’ll be the Dexamethazone kicking in!..…

Take care,

Lomalinda

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Hi Lomalinda

Just to say that I will be thinking about you tomorrow, you have done so well.

Becks (aka Rebecca!)

xxxxx