They want to start me on chemo first...b4 surgery

Hi :frowning:

I was newly diagnosed with br cancer 4.5 weeks ago, they told me it was a grade 3, 4.4cm IDC, with 2 possible nodes affected post MRI screening.

I am a bit concerned because my family and I were expecting that I would be starting with Surgery first and then Chemotherapy afterwards…or at least to be given a choice of chemotherapy afterwards…but we were told that ‘in my case’ we should do Chemo before [which I ended up agreeing too, but was a little miffed given that all the literature and everyone I’ve read, seems to be having surgery first or chemo last if you will] which would start as soon as next week. :frowning:

My big fear is that I won’t be strong enough or at least I would have given myself a battering before ending up having surgery later.

Also, they keep saying about how it is going to ‘shrink’ the cancer and mop up the systemic random naughty cells that may have entered the bloodstream and ended up anywhere else…

but if they do surgery after chemo, isn’t there a risk of seeding the cancer, even if it is shrunk? They said I wouldn’t have chemo afterwards again but that it would be radiotherapy.

:S

I just read another woman’s post, and her decision not to have the chemo after the surgery, and I was just thinking about it.

I’m of the opinion at times that we can cure it ourselves with a radical overhaul of our lifestyle – be that proper diet with a relaxed stress free lifestyle and lots of humour in our lives…but maybe i’m being a little hoi poloi about that.

I suppose I’ve read so much about how chemo not only lowers ur immunity, but if having chemo before surgery lowers the immunity, then how am I going to help my own body fight the cancer too?

:frowning:

There is that feeling that chemo is like a poison…like im about to poison my body to get better…its hard not to feel that way…but I am nervous I have to say.

I was told that this is the new way they are trying to deal with it all now. That the mortality/morbidity rates supposedly are better [i don’t know about this]…that according to the NICE guidelines, this is better to have the chemo b4 rather than after surgery, [but ‘granted there are no studies done to show this’]…

I suppose in my mind was that at least if you have the surgery, then you know where you stand - that the big thing is out, the nodes will be removed, that we can see what or where they stage me, and that we can see if we want to go down the chemo route.

I read also that some say Chemo is just a big word that all are afraid of but in reality the experience is not as bad bad as the movies or some make it out to be.

I think we would all not like to have chemo if we could. But I though that maybe the idea behind chemo was to mop up the cancer that couldnt’ be gotten too after surgery, the cancer that existed in the lymph nodes as micrometastases…as opposed to before…which tho it may shrink the tumor…would it clear the nodes, is the prognosis better and is there really no risk of seeding during surgery even tho it is supposedly shrunk and supposedly easier fro the surgeons to handle…

I was looking on site, and I couldn’t find anyone else in the situation I am in, [perhaps I haven’t looked hard enuff], who are starting Chemo first before surgery.

I would love to hear from you if you are.

I just wanted to wish everyone the best and success with their circumstances and decisions.

Zee.

Dear Zee,

I read your post and wondered if you may find it helpful to talk through things with someone on our Helpline. They are able to give advice and support to help you through this difficult time.

Breast Cancer Care also have a telephone based peer support service where you would be put in touch with a volunteer who has had a personal experience of breast cancer. You could ask to speak to someone who also had chemotherapy before surgery. The link to find out more about this service is below:

breastcancercare.org.uk/server/show/nav.518

You could ask someone on the Helpline to refer you. The Helpline is open tomorrow from 9.00am to 2.00pm and on weekdays from 9.00am -5.00pm. The number is 0808 800 6000

Kindest regards

Janet

Facilitator

Dear Zee
It’s always really difficult at the beginning because you have so much thrown at you and you have to make pretty quick decisions - or in my case I was just told what treatment I was having and their were no decisions to make but lots to do and get sorted out before I had my first lot of chemotherapy.

I was in a similar position to you in terms of 4cm (at least) lump and lymph node involvement, grade 3. I was told that the chemo was first to halt the growth and shrink the lump and make sure any rogue cells that may have escaped were killed off. I was also given an injection after each chemo session to boost my white blood count (as chemo affects this in some people) this helped to keep my immune system stronger and I finished chemo (6 sessions) and had my operation exactly 3 weeks later - I had no problems with having the operation - I didn’t feel that bad or weak or anything and I was on my feet pretty quickly. I don’t know whether I’m just one of the luckier ones in terms of don’t really feel any different (energy wise) to how I felt before. Def a bit more delicate though and need to eat/drink regularly.

I had a mastectomy and this was partly because I had DCIS (ductal carcinoma in situ or in other words cancer which hadn’t yet become invasive but had the potential to) and to be honest, I was pleased to get rid of the whole breast and lymph nodes to give me the best possible chance of beating this horrible disease. I’m now 2 years down the line from diagnosis and doing ok. I also had a year of herceptin and 15 lots of radiotherapy treatments after the operation. Haven’t had reconstruction yet but that’s on the cards.

Hope this helps a little and I’m sure there are plenty of others who’ve had chemo first and who will post.

Best wishes
Ruby x

Hi Zee

I was diagnosed with IBC a very aggresive type of BC last August and Like Ruby was basicly told what was to happen and it did happen very quickly. Within 2 weeks of diagnosis I had had scans to see if the cancer had already spread anywhere, got the results back and started 8 sessions of chemo.

I was luckly in that I had an oncologist and chemo unit who prescribed as much as they could to deal with the side effects before they happend.Chemo took 6 months and they were hard but not unbearable and any problems I found that someone on this site, or the nurses at the hospital, could answer for me. It was reassuring to feel the lump shrinking over the months and by the time surgery came there was very little left.

Surgery happened 3 weeks after the end of chemo(A bi lateral Mastectomy) and although I was tired, as anyone who had major surgery would be, I was up and about very quickly -in fact I was only in hospital 1 night and then treated at home.

15 sessions of rads followed, which finished last month and now I have to finish a years course of Herceptin and 5 years of Femara. With a diagnosis of Breast Cancer life will never go back to how it was before but at the moment I feel good. My energy levels have returned and I am doing all the things I was doing before, maybe with the exception of taking life for granted.

We all have to deal with this rotton disease the best we can - I am content with the treatment I have received from my hospital so far, and I know that if I have further problems in the future they will deal with them for me to the best of their ability. I hope you are as lucky with your health team.

Ask anything you want and I will do my best to answer

Take Care

Andie

Hi Zee

Quite a lot of women have chemotherapy before surgery. This is usually done when the cancer in the breast is quite large or there is definite evidence of lymoh node involvement. The practice of chemo before surgery is more commion in the USA but it is increasing here.

There are 2 reasons for chemo prior to suregery:

  1. To try to shrink the tumour so that less radical surgery may be sed (ie. WLE rather than mastectomy.)

  2. And this is more important:-to assess response to chemotherapy to inform omcologist about what treatment may be necessary in future.

Statisically I believe that there is no difference in survival between those having chemo before surgery and those having it afterwards(among women offered chemo prior to surgery.)

I had AC chemo before surgery (6 cycles) I was concerend about being fit enough for surgery but I was fine. The AC chemo did not shrink my tumour so I still had to have a mastectomy and then further chemo (taxotere) after surgery. I know of many women who have had excllenyt results from the chemo and have seen their tumours significantly reduce.

Would we could heal ourselves with a radical overhaul of our lifestyles…I know or know of quite a lot of dead women who thought that.

I think you should seek as much information as you can from your own medical team and from the cancer helplines: BCC, or Macmillan for example.

best wishes

Jane

Hi Zee,

I very rarely post to these forums nowadays but feel that I should for this post. I was also given chemo before surgery for a grade 3 4cm+ breast tumour and 2cm palpable infected node. Like you I worried that this seemed to opposed to the norm and that I wasn’t convinced that this was the right treatment at all. All the information on the internet seemed to biased towards chemo before surgery was just to shrink the tumour so that the breast could be conserved, but I was much more interested in the long time survival benefits (and I was originally told and accepted the fact that I would eventually have a mastectomy whatever).

In my case this approached may have saved my life (or at least extended it) as JaneRA says the response to chemo is much more evident before the breast is removed and give the oncs valuable information. I was given 2 cycles of AC chemo (which is similar to the more prevalent FEC chemo given nowadays). This didn’t seem to work (lump appeared to grow)and I was doubting the sense in having chemo at all and seriously questioned what I was doing to my body. I was then transferred to another chemo called Taxotere
and this produced a much better clinical response in my case.

I didn’t find surgery too much of a problem to deal with (though this was delayed due to naff information given to me as to how long the time schedule between chemo and surgery should be).

This is a very difficult time and I truly sympathise with the demons playing with your thoughts at this time. I can just say that
that the fact that I am coming up to 5 years in Sept with no signs of recurrence can give you some hope that this is the might be the right course of action for you.

As Jane says, do ask (and keep asking if need be) for information from various sources to assure you are happy with what is best in your situation.

Good luck
Roberta
xx

If humour cured all, morecambe and wise would still be with us

I like a laugh but sadly I believe more in the results of randomised controlled trials when it comes to medicine.

We know cancer treatment works better than leaving well alone in 99% of cases, particularly with high grade cancer and large tumours.

Yes we’d all like to have a cup of tea and spirit it away with a faddy diet but no such luck

Mole

As Roberta says these early days are horrendous as you struggle to get your head round the whole notion of cancer at what it means and your mind is reeling. Well mine was. I had no idea what I did and didn’t believe anymore. When you are a health freak and still get cancer it is galling to say the least.

Many people start out by hoping that cancer is something that can be cured with a positive outlook and a better diet. As time goes by you will probably come to find - as many people do - that that is sadly not true. However eating well and trying to be as happy as you can in your life is no bad thing - each to their own.

What is it with the term “mop up cancer cells” - can’t the oncs come up with anything more definitive and precise? It doesn’t seem to matter where you are being treated in the country it is THE buzz phrase. It is used as a kind of dumbed down shorthand everywhere.

With pre-adjuvant chemo they can see how well (or not) your tumour responds to chemotherapy. That is incredibly valuable. For those of us who had it after surgery it is a leap of faith that it is doing any good. Chemotherapy IS poison - but it is poison that is endeavouring to save your life.

Good luck with it all - these early weeks are so baffling and terrifying.

I really worry about all the woo that’s out there about “curing cancer.” There’s a growing tendency these days to mistrust science and not to understand the principles of critical thinking and evidence. Modern medicine has to undergo lots of trials to check that it works, and to understand the contra-indications and side-effects - “alternative” medicine… doesn’t. But it presents itself as “softer,” as being based on “ancient wisdom,” etc, and people are tempted.

A lot of the “evidence” you get for this woo is anecdotal (and I’m afraid could be outright lies.) Yes, someone with a low-grade, slow-growing tumour in-situ could live for years without surgery or chemo - but if you’ve got an invasive Grade 3, get ye to your surgeon before the thing erupts through your skin (like it used to 100 years ago)

Of course chemo is toxic - it’s supposed to be. And yes, it’s nasty. In a few years, there’ll be better treatments, and we’ll look back on it with horror - but for now it’s the best weapon we have, and it’ll be scientist who discover the new treatments, not “alternative therapists” waving their arms around redistributing our energy fields.

But there’s a very good (scientifically based) arguement that diet and exercise can help prevent cancer, and prevent recurrence. It’s to do with chronic inflammation - not the acute sort you get with an infection. Google “chronic inflammation cancer” and you will find some stuff on it - most of it far too scientifically dense to understand, but some of it is helpful. The main thing being that they have found blood markers of chronic inflammation, and these can be reduced by diet and exercise.

So guess who’s starting swimming again as soon as I’m over the chemo!

I can only reiterate what others have already said. My tumour was very large and I was told I would definitely have a mastectomy whatever, but that I would also have chemo first.

All I can say is that the chemo worked really well (FEC), the CT scan showed that the cancer had gone from lymph nodes and the tumour itself reduced by about 75% - this means that I know that the chemo has been working which is the big plus of having it first.

I won’t lie to you I found going through chemo very hard indeed. I had a lot of side effects that took a while to control but I kept reminding myself that the cancer is life threatening.

I am going to have a double mastectomy next week. I will have had 7 weeks break since last chemo and I have needed that to recover well enough for the surgery. The surgeon and oncologist will guage when you are fit enough. I am surprised by how much I have picked up in those weeks. When I was lying in bed after my last chemo completely fatigued I did not think I would be going swimming, going walking, having people over for drinks tonight etc before my surgery.

I have changed my diet to a much healthier one which I feel has helped me quite a bit and also cut out alcohol completely. I see this as a way to strengthen my body for all the treatments, boost my immune system etc. Personally I don’t see the healthy diet and medical cancer treatments as an either or thing. I’ve opted for both.

You can ask why they’re not doing chemo after and whether that is definite. I am going to have further chemo and how much will depend on what they find from the op. I am also going to have radiotherapy.

I have found it helpful to ring the helpline to get further information and then use this to have better informed discussions with the oncologist and surgeon.

best of luck with it all.
Elinda x

Hi Zee,

As you can see from these posts, quite a number of us had chemo before surgery. My story is a little different because it started 19 years ago with my first diagnosis. I had a 5cm tumour Grade 3 and a bit of a mixture but the notes from back then are a bit vague. I had one of the chemo regimes little used now of MMM and was told chemo first because of the size of the tumour (I wasn’t told back then of the benefit of chemo first to see if it was the right one for me!) It clearly was because that tumour shrunk visibly on the first chemo of 6. By the end of the chemo it couldnt be found on a mammogram. I don’t think today it would have been left at that but I had no surgery, just radiotherapy to follow. There wasnt the www or forums like this around so we accepted what the professionals told us. I did have 5 years clear after the chemo and unfortunately it did come back again in the same breast but as a new primary. It is very encouraging when you can see & feel that chemo really is working. We all react differently to chemos and the MMM regime for me was a very easy one, but subsequent ones I have had were really tough but we get through it because the alternative for me is unthinkable.

I do hope that all our stories are helping you to understand more and enabling you to have discussion with your oncologist at your next visit.

Dawn

I was diagnosed with an 8cm + tumour which turned out to be IBC last June. I had 6 rounds of taxotere chemo, which was tough but I got through it and now it seems a distant memory. After the 3rd chemo round my tumour had shrunk to 4.5 cms, and by the 6th one it had shrunk to 2.5 so in my case the chemo definitely worked.

I had a mastectomy in November, one month after finishing chemo. I was glad to have it as for me it was the start of a new round of treatment, 25 radiotherapy sessions.

I live in France and was at first not sure of what they were doing, but after researching and checking on this and other forums I found that neo adjuvent chemo is quite common in larger tumours.

I am glad I had it that way. I understand your feeling that you want to be rid of the cancer, but, remember the chemo will be killing it and your body will recover in time.

It’s worth it to have your life, but good luck with what you decide to do.

Hi Zee,
i just wanted to say that i chose to have the chemo first as there was a delay in my diagnosis.(6months!)
A week before my chemo was due to start i was in such a state,i could feel the cancer eating away at my nipple and was ina lot of pain ( i have grade 3 multifocal invasive ductal) 3 tumours and node involvement,not thought to of spread.
As soon as my chemo started literally a week afterwards,I could feel my breast changing,after just one cycle my lumps were literally blown away,i can stll feel them a little bit and have had 3 cycles now.But I tell you something the physchological lift that it gives you to get through the chemo just knowing that its working is amazing.
Yes ive got a double mastectomy (my choice-docs advised single,as its only in one breast but id like to go with precaution)With immediate reconstruction to look forward to ! I know thats not going to be a walk in the park,but knowing the chemo is doing what it should prior to this gives me confidence that i done the right thing.
Onc said IF any stray cells had gone through the nodes that its highly unlikely theyre still there after what its done to the lumps.
Just my opinion and everyones different,i went with my gut instinct,mainly based on the fact that it cud take a while to get chemo in if theres complications with surgery etc ie drains,infection etc.
Good luck with what you decide.xxx

Hi Smallstar,

Thank you so much for your post, it was kind of you to reply.

I’ve decided to go ahead with the chemo aswell. I’ve got a friend who is an oncology nurse, and she was saying that this is the way they are planning on moving forward for women with breast cancer… it seems to show better progress/healing times etc seem to be better.

I really wish you so much success with your treatment, and I have to say it was encouraging to hear that for you, you were encouraged by chemo having an positive effect on the cancer.

I can only hope for a positive outcome too with chemo first.

I thought about it alot over the last week. I believe that I feel more resolved with the idea of starting chemo first. I think my family have come to terms with it also.

Thank you so much for your post Smallstar,it was helpful for me.

:wink:

I wish you the best…

Dear all,

I only just realised that there was a page full of comments! My eyesight is going for sure!

I am truly touched by the response, the replies from all of you.[Thank you Ruby, Andie, Jane, Roberta, Dawn, Peacock, Molennium, Elinda, Susanne, msmolly, and Janet] It certainly helps to talk about it, and I am so grateful for all your comments and the sharing of your experiences. Truly. I think I will be busy reading and re-reading all of your comments in detail, and will consider your experiences and thoughts and ponder any questions I may have.


An hr later…

I wanted to say that I wish all of you the best where you are now, and the stage in your treatments. I was encouraged by the comments about chemotherapy demonstrating to not only the doctors but yourselves, that it was having an effect, before the surgery. I noticed elinda, you mentioned you’re having mastectomy soon, I wish you all the best with that and recovery. Thank you for your post and sharing your insights with me and your experience of your recent chemo. I really hope all goes well with the upcoming surgery.

Dawn, it is true, I don’t know how anyone managed without the www, the support on this site alone is testament to how lucky we are to have it now, and I am grateful for your post. I’m grateful to have this facility. Yes, everyone’s stories have been invaluable to me so far.

Peacock, thank you for your post, how did you find the radiotherapy, are you still having them? This is what the docs told me, that after the chemo, and the surgery, it would be radiotherapy.

Roberta, thank you so much for posting, I’m glad you did, it was quite reasurring to read your post. I’m glad to hear how you are doing 5 years on,I pray it stays that way for you. Yes, the demons are there, playing with the thoughts, but I have to say I’m feeling better for having read everyone’s comments. I think things are certainly getting a lot clearer.

Andie, I really felt like messaging you personally. I can only related to how I’ve felt in these last 4,5 ish weeks or so, and how I agree, about not taking life for granted. Suddenly it’s like, ‘What was I doing all this time?’… Thank you so much for posting your experience with everything so far.I hope you continue to be pleased with the way your health care team are taking care of you. From my experience so far they have been quite kind. I was also told that I may start on Herceptin, if my heart is strong enough for it. Thank you for your offer of answering any questions I may have.

Jane, thank you for your post. I had no idea that chemo b4 surgery was more common practice in the USA. Thank you letting me know that. That is helpful. I’m not sure yet what chemo it would be that I start next week. I suppose it’s FEC…not sure. I shall have a read about AC and taxotere. I like to be informed about these things. I havn’t yet tried Macmillan. But the BCC have been very helpful the last two times I called them. Very very helpful. They deserve the donations they get.:wink:

Ruby thank you so much for your post. Apart from the fact that I have IDC, yes, you are right, I think my treatment plan so far, sounds like the path you’ve already taken. So they’ve said it will be chemo, surgery - mastectomy or reconstruction I have no idea yet, radiotherapy and then herceptin, Gw. I hope that you continue to do well.

Msmolly, I have to say yeah, I think you get tired of hearing ‘mopping up the cancer cells’…I agree!! Thank you for your post. As I may have mentioned somewhere, yes, I think this is the main thing reasurringme, that the Chemo having an effect on the tumor can be seen, and hence…we can know that there is a chance of beating it.

Suzanne, your post made me smile a little lol. I agree, I’m actually not a fan of alternative therapies so much, I do believe that diet may help the body repair itself perhaps during chemo or at least boost the immune system somehow ie less sugar, more veggies and things like that;) I suppose denial is what makes one wish one lived in some magical disney movie where there was some fantabulous freaky healing mushroom.lol. Thank you Suzanne, :wink: It’s all about being real. It’s like elinda was saying, it’s eating well and medical treatments together that is a given. Confers the best chance. Eating well I suppose if I’m not too sick :wink:

Molennium - :wink: I agree, I think I was after the RCT for chemo before surgery, I suppose because I was told no studies had been done, I wasn’t entirely sure where my docs were coming up with this information. However having asked about it on here, and the lovely lady at the BCC helpline, and also someone I know who actually administers the chemo, I am starting to feel certainly more reasured about this process. Or at least hopeful, that I’ve agreed upon the right choice.

I appreciate all your replies, thank you.

It is true, it does feel like it’s all at you in one go , this week alone was a lot of ‘investigations’ as it were. It’s a rollercoaster ride for sure.

I hope to update soon.

Bless you all,

Zee.

Hi Zee,

Just to add to the above, in the hospital in which I was treated many of the people I came across seemed to be having the chemo first! My chemo (4 x AC and 4 x Taxotere) actually completely obliterated the tumour (3cm) and it was indetectable on ultrasound on the day of the surgery. I was able to then have a successful WLE.

I am not sure which surgery you are having but one thing to add, if you are planning a WLE, please insure that you monitor the tumour shrinkage. I was lucky that I had a mole immmediate above the tumour so the consultant was able to locate where the tumour was, otherwise I would have had to had a mastectomy. Apparently they can insert tiny marker pins too.

I am certain that chemo first was right for me and I hope that you too are happy with your schedule. Good luck as you start your treatment!

Nicky

Hi
I cant help you much with your questions as they are mine as well! I was told on Thursday I have a large tumor in my left breast and then went for yet more tests on the calcifications in my right. I have a bone and CT scan on wednesday and get all the results Thursday, my Chemo is already booked for Friday. Like you they have said I need to have chemo, have already told me I am having masectomy anf then six weeks radiation. Did not ask any questions as shell shocked and could not talk to nurse when she phoned as had my children with me. was planning not to tell them until after I have found out if it has spread on Thursday. Main worry now not starting Chemo first but will they just leave me if it has spread? Having a Picc line put in on Wednesday so does that mean they will still give me Chemo even if it has spread? Sorry just wanted to contact somebody that appears to be in same situation as me but have now posed more questions for you! Good luck with it all and although I have never used a chat room etc got a feeling that this may be a lifeline for me as can ask questions without getting upset and dont have to put on a brave face. keep in touch x

Hi Zee,

I’ve only just seen this thread. You’ve had a lot of good advice & info already….I just wanted to add to what Nicky has said about monitoring the shrinkage.

I had one of the clips she mentions inserted about half way through my 8 neoadjuvant chemos (4 x EC, 4 x Docetaxel). I think I had the most shrinkage during the first couple of rounds. Because of that, I had several ultrasounds, though the original plan was for just one after the fourth chemo.

I didn’t manage a complete response like Nicky, but my tumour resolved itself quite neatly, without breaking up. I think it was under half the (3cm) original size, and downgraded from a 3 to a 2 in the end.

I also had to have a guide wire inserted just before my op (segmental mast.) Both the procedures were similar to having a core biopsy: unpleasant, but worth it. You should also be having an MRI after you finish chemo, to help the surgeon plan your op….

So it looks like having chemo first was the best thing for me too. In my case, I would have had to have more surgery. But I’m not sure that there are any real statistics just yet about prognosis after neoadjuvant vs. adjuvant….

Jac, I have read more than one study / stats saying that some of the best responses to neoadjuvant chemo are on so called larger tumours.

Good luck with your treatment & all the best to everyone,

LXXX

Hi Zee
my niece had breast cancer 18 yrs ago age 32 she was in the Royal Masden,she recieved chemo first,i remember well she was very ill at first but luckely she never needed surgery after recieving the Hickman Line the chemo was fed into her body for a long time months in fact,today she is fine.Hope all goes well for you.x

H Zee,
I too had chemo before surgery as my tumor was large 9X11cm
I had 4x4 4 EC & 4 Taxotere (just finished).
My tumor is now 3cm and I had 2 nodes involved, at my last scan they couldn’t find the nodes at all although I still have to have them removed.
If you have chemo first it does take longer to recover after the surgery, as you said cos your body has already had a bettering.
I do think it was the right decision for me to have chemo first, infact all the women I know persoinally have had chemo first.
The chemo might not be as bad as you think?
The SE are things like sore throat,heartburn,thrush, nothing that you can’t deal with.
I have my op (mx)on 1st July then rads.
Hope all goes well for you love caronx