Chemo or surgery first?

Hello all,
I am 25 and was diagnosed with breast cancer 9 days ago. Obviously quite a shock as for anyone who is given this diagnosis but with no family history and being so young think i have particularly struggled. Things have happened fairly quickly and feel like i have had every available ultra sound, biopsy, bone scan, MRI and CT.

Although I am awaiting results of the bone scan and CT chest and abdo I have been been given the choice of either chemo ( six sessions over 18 weeks) or mastectomy first. Then later radiotherapy and or hormone therapy if needed.

My cancer team have assured me there is no difference to having one or the other first as I will still need a full mastectomy due to the pre cancerous changes occupying a large area in the breast.

I initially thought chemo first but will i want to face surgery after going through 18 weeks of chemo?

Any thoughts, previous experience would be greatly appreciated!

Hiya,

Im so sorry you have had to join the club that no one wants to be in. Must be very hard for you being so young (even though its hard at any age). I feel for you I really do.

I personally think chemo before surgery is a good idea as you will know whether it is working for you or not.

I had quite a large lump (5cm x 8cm) so had to have chemo 1st to try reduce the size of it before my mastectomy.
Half way through the chemo (I was due 6 x EC) I had an ultra sound scan that showed that the lump had hardly changed in size so it meant that the chemo I was on was not working for me so I was changed to Taxotere. Again, half way through I had another ultra sound and this time it showed a major decrease in the size of the tumour.
If I had surgery 1st we would have plodded on with the EC not knowing that it wasnt working.

But thats my experience…

I hope your treatment goes well whichever way you decide to go.

regards

Julie X

hi
im the same as julie in having chemo first. i to had a large tumour, 10.5cm which after chemo had shrunk to half the size. hope this helps. good luck with your treatment.
maria

Hi CharlieChoo

Welcome to the Breast Cancer Care forums. As well as the help and advice from the many informed users of this site you may find BCC’s resource pack helpful which has been designed for those newly diagnosed. The pack is free of charge as are all our publications. If you would like a copy just follow the link below:
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Kind regards

Sam
BCC Facilitator

Hi Charlie,
I am sorry that you have to face this decision especially at such a young age. I am commenting only from a physical point of view and not from a medical one eg the shrinking of a tumour.
I had a mastectomy followed by chemotherapy and I do not think that I could have coped mentally or physically with enduring chemo first and then facing a mastectomy. My entire body screamed no more after chemo and even a blood test became a big deal I was so very weary.
Having said this, of course, everyone differs going through chemo.
It is such a difficult decision to make, I am sure that many ladies will answer you and help you through this time.
I wish you well.
Margaret

Hello Charliechoo

Sorry to hear your diagnosis, how awful for you and I hope that you have some support from family/friends?

I was diagnosed on 4 June, after a simple operation which was just meant to remove ducts. I had had a mammogram and an ultrasound which had proved negative, so it was a great shock for me too and like you there is no one in my family that has had cancer.

I wasn’t given any choice: my Onc said chemo first (4 x taxotere and 4 of something else), 3 weeks apart. Then mastectomy, with radiotherapy to follow and possibly hormone treatment afterwards.

I’ve had my first chemo which wasn’t so bad, bit like having a bad dose of flu really and I am due to have my second chemo on Monday.

I wasn’t sure at first about the way my treatment was handled (I live in France so needed to check out whether they were handling it like in the UK) but now I am glad that is how it is going. My tumour was/is aggressive and already stage 3 so I think that hopefully having the chemo first will zap the blighters to nothing.

Good luck and let us know what you decide

Hi Charlie,
You poor love, it’s hard to understand, isn’t it? But here we are.

Your question is one that I’ve been inquisitive about, as well. I’m being treated in Finland, which has a good record, I understand, & better ‘statistics’ than the UK (whatever that’s supposed to mean & I’m grateful but not interested in the details). Here, they almost never do chemo before surgery. I’ve asked about this and got a variety of feedback. Scanning and early detection has something to do with it because they would only consider chemo first if the tumour was very, very large with messy margins, which is relatively rare given the health service here. I’m not medically informed so don’t rely on my interpretation of my medical team’s explanation but, as far as I understand, chemotherapy - whatever the cocktail - is most efficient with incipient or ‘baby’ or roving cancer cells (I shouldn’t be going here, I really don’t know what I’m talking about, this is just a ‘gloss’). Finnish medical teams want to get the ‘mature’ growth out as soon as possible. Pre-surgical treatment is state-of-the-art. Mammograms are followed by ultrasound and needle biopsy of the growth. The next step is to inject the growth with radioactive fluid in order to be able to ‘image’ the sentinal lymph nodes - the 1-3 or 4 nodes through which lymph passes directly after contact with the cancer. This is so that the surgeon can find it/them pronto. Wide ranging scans are also administered to eliminate the possibility of established secondaries. These came back negative for me. Just before surgery the tumour is injected again (and wired for easy location) with a blue dye so that all the nodes in the area beyond the sentinels are very easy to find - all being blue. (Mastectomy is rare.) During surgery the tumour is removed along with the sentinels which are sliced & diced by a pathologist on the spot. If any cancer cells are found, ALL axillary lymph nodes are removed - in my case 19, 4 of which also had metastasis (meaning the cancer might be/is on the move). Then they stitch me up - leaving a very slightly depleted right tit & a scar that is covered by a well-chosen swimming costume.

The point of all this blague is that growth is gone and chemo starts. When it is over, a period of radiotherapy follows. And then stuff that I have not yet looked into. If I am right and chemo works best on ‘baby’ cells, then these 5 challenging months are aimed at reducing the possibility of secondary cancer in the various places it is known to crop up. Chemo can - and usually, but not always, does - reduce the size of the original growth whic probably makes surgery easier but as mastectomies seem to be so common in Britain anyway - so what? Finnish medical staff are bewildered and incredulous about the practice of putting chemo first - including my onc nurse who did 16 months at a London hospital. Why? they ask. Get the cancer out fast. Nor do they endorse mastectomy - the figures don’t support it any more. They do thorough excisions, and mastectomies as a last resort (I have a friend who had one but she is very small-breasted and the tumour was large and messy - reconstruction is considered cosmetic and comes much later because it can cause so many complications & ‘health’ is the first priority.)

After the challenging months of chemo - with the surgery scar well on the mend - they come back to the ‘mature cells’ which might have been left behind in the breast area & do the rads. which - so I understand & I’d really welcome correction - work best on mature cancer cells.

From an entirely subjective point of view - I would absolutely HATE to be going through chemo, which has its ups and downs, with a cancerous growth still sitting in one breast. I cannot see any point in it at all and would thorougly recommend surgery first when you are feeling fit. It’s a relatively easy part of treatment that also gives you a month or so of thought time before the chemo starts. Some people sail through chemotherapy, some people are hit hard; there doesn’t seem to be any way to predict how it will take you physically. As a professional anthropologist as well as a fellow sufferer, however, I can assure you that your mental strength will be tested by the experience: from what I have observed since my own diagnosis on Valentine’s Day this year, it feels more ‘positive’ to experience chemo as someone who is ‘cancer-free’ and undergoing whole-body prophylactic treatment, than someone who is going through this shite merely to - possibly - shrink a ‘nasty’ before operation. And then there is the fresh scar to fry with rads.

All silly, I know, but humans are, a bit.

You’ll find the strength, young one. Everyone does.

Keep laughing, M-L xx

Charlie
I am in the US and we have a pattern here of what is called Neo-Adjuvant therapy; chemo before surgery. I have a 4 cm tumor in my breast and have had 6 rounds of two diff kinds of chemo first. ML is right; sitting here with this darkness inside me is harrowing. It feels like walking around with a time bomb.

If your team is telling you will need a mastectomy anyway; then I would go for the surgery first to get rid of the cancer tumor. Chemo can then be used to “mop up the remaining cells.” But at least the majority of the problem will be gone and it will be gone so it doesn’t have a chance to spread.

As it turned out for me, the chemo is not working, so the turmor is growing and I am having my MS tomorrow. I can’t believe I am looking forward to it – but just getting the cancer out and returning my body to wholeness will be such a relief.

Of course, that’s just my point of view…but I think you are really asking for that. It is astounding what you will find yourself adapting to and coping with. Just remember that you are not defined by your breast cancer, your breasts or by chemo; you are much larger than the sum of all these things! Stay strong, girl!

Emily
xxx

Hi CharlieChoo

first of all, I’m very sorry to hear about your diagnosis, it is a very scary place to be…

I’ve also had chemo first and I’d like to give you some more information, I was also a bit taken aback by the idea of chemo first as I’d never heard about it so did a lot of research, and I can now assure you that a lot of protocols now do chemo first for larger tumours. This is done for several reasons:

  1. it makes it possible to verify if chemo works (as already said);
  2. it will also target and eliminate any rogue cells that are in your body, surgery doesn’t do that, it only removes the lump. After surgery you’ll have to wait a few weeks before you can start chemo, in during this time rogue cancer cells can still spread. This is why is done for people with larger more aggressive tumours, as there is more likelyhood tha it has started spreading (and it would not be visible)
  3. (this was true at my hospital but it may not apply) there was a bit to wait to have surgery, while chemo could start the following day, no time wasted.

In my case it worked a treat, by the end of chemo I had had a complete pathological response (ie no sign of cancer even in the breast tissue at all), and I was spared a mastectomy and full node clearance, having a lumpectomy and sentinel lymphnode only.

Surgery was not a walk in the park, but much better than chemo, (by the way I had 4 weeks between chemo and surgery to allow my body to recover), and I was fine wihin a week.

If you want to do your own research google neo-adjuvant chemo. As your doctor said there is no difference whatsoever in outcome, but it gives the great advantage of being able to feel (if its palpable) your tumour literally melt away under your skin. At least you know all the suffering’s really worth it, and as Julie said, you can change it if it doesn’t work.

Best of luck with your decision, hope everything goes well, whatever you decide.

Hi,

Sorry to hear of your diagnosis; it’s a scary time at the beginning especially with all this information being thrown at you - on a topic you’ve probably only given a passing thought previously - and then you’re expected to make a choice! I found making the decisions so hard and really wanted someone to tell me what was best. However, if there was better odds, then the experts would advise you. I think in this situation whatever decision you make will be fine, and the results are the same either way, so don’t worry too much.

I don’t know if it helps, as I see you’ve already had varying opinions, but I agree with Webmum. I was dx Jan this year with a large Grade 3 lump and given the choice - they said the size of the lump and my age (37) meant chemo was definite so I could have the choice. After much agonising and researching, I chose chemo first as it would see if it was working, and also there was a chance of lumpectomy rather than mastectomy for me, so it was worth a shot. (By the way, the appts the consultant/surgeon had “pencilled” in for me assumed this route, and also my onc said I’d made the best decision - but remember each set of circs are different for us all. My onc retired this year but I often heard comments of how highly regarded he was and also quite forward thinking, as not everywhere offers chemo first).

I had Sentinel Node Biopsy straight away and started chemo the following week. SNB showed 1 out of 2 nodes positive, but I was assured that as I was getting chemo, this would hopefully blast any such straying blighters. Chemo worked, lump shrunk dramatically and just 3 days ago I had a full node clearance, lumpectomy (having had wire markers inserted to mark the tumour) and breast reduction on other side, rather than the mastectomy I was expecting. I’m surprised to be up and about and not too pained or restricted in movement already - no driving or heavy lifting for at least 4 weeks - but I’m so much better than I expected. I’ve not had my pathology results yet, but am due to have radiotherapy in a few weeks too.

Chemo is tough, and we all react differently, but you can get through it. I had 5 weeks from last chemo to surgery, and in last week or two felt so much better; I guess only then did I exactly realise how tough the chemo is on you. But I felt up to surgery, had my head around it all and was prepared (another decision to make about type of surgery, mind you - don’t like the decisions bit!). I really think if I’d had surgery immediately I may have struggled with it, as it was all so new to me back then. I do remember thinking on dx that I wanted to get the cancer out of me as soon as possible - getting the treatment started as soon as possible was key for me, but being advised by my BC nurse that “treatment” would start as soon as chemo did, if I chose to have that first. In my case physcologically (sp?) I also had a boost half way through chemo which showed it was working - it made the discomfort “worthwhile” in my head. A different outcome or change of chemo then, would have been hard, but at least there’s the opportunity to change to something that works for you - surgery first and you don’t know I guess.

So I’m glad I decided chemo first, but everyone is different and whatever you decide will be right for you, I’m sure. Good luck with it all,
Ax

Please could I ask the last 2 posters (but hello everyone) a question. Like you, I have a large (more than 5 cm) tumour or tumours and from my lab report (its French so translation a bit confusing) it seems that from what they removed for biopsy I had necrosed tissue as well as active cancer cells. I believe that the dead tissue means that cancer was actually dying in some cells which I’ve read isn’t a good thing.

I’ve now had 2 chemos and my question is : how soon did you notice the lump/s beginning to go down please, after how many chemos? I can still feel something quite large, not a lump but then I never had a lump in the first place, it was all just a swollen mass.

I hope Charliechoo is ok and beginning to work out what she would rather do

Hi Peacock,
I can’t recall exactly, but think as I was about to get my third chemo, I started daring to think it had reduced a bit. Found it really difficult to tell though. The onc said he thought so at my third appt too, but my mammo/scan was the day after my fourth chemo. Lump had gone from around 5cm to 2cm, and then further mammos/scans after 5th and 6th chemo also showed some reduction but much less dramatic. By the end I had difficulty feeling it although it was still over 1cm. I don’t know mine was a lump either, just a firm mass at the side of the breast - difficult to feel the “edges” of a lump.
Sorry I can’t be more specific, and I’ve no idea what my lab report on biopsy said other than grade 3, 5cm and ended up triple negative - so can’t help with the necrosed tissue thing. But good luck to you - I hope its reducing with chemo - hang in there!
Ax

I know you asked for only the last two folks. But want to emphasize that if you feel the mass and it doesn’t feel like it is shrinking, say something!
You know your body better than anyone else.

My oncologist said that before the “lump” would shrink, it would get softer first. Then shrink.

We are not nurses here; we are people undergoing the process. So you might want to call and ask your breast care nurse about a translation. Or, you can ask the moderators…But I would suggest that you not guess and ask for information bout this.

Just a thought…

Emily
xxx

Hi CharlieChoo
so sorry you have had to join this site, especially being so you, but I am sure you will find it a great help and get lots of advice and make some good friends who will offer lots of support. I had a grade 3 lump size of 4cm and was advised to have chemo first to reduce and check chemo was working for me. I have had 3 so far and have 3 left and the lump has already reduced by 50%. Like you have been advised already, by having chemo first, not only are you getting the worse part out of the way, you will also be assured that the chemo you will be receiving will be doing the job. I took the advice of the doctors and am so glad I did. I wish you luck with whatever you choose. keep in touch and let us know how you are getting on
deb x

Hi Peacock

can’t remember exaclty, but I had 12 weekly Taxol+Herceptin, followed by 4 FEC and it had definitily halved by the end of Taxol, though we could tell the difference already after first few weeks.

By the time I started chemo, tthe skin had gone all red and inflamed, and the inflammation going down was the first sign of treatment working. As my oncologist said at the time…we got in there just in time. It was definitely a lump, and a big one, hat was even poking out of my breats when lying down.

I also had necrosis, which made Her2 testing difficult, had to be redone a few times. It happens because the cancer is very aggressive and the cancer cells are multiplying incredibly quickly. (my KI67 was 90%) But the other side of the coin is that the fast growing cancers tend to respond well to treatment, mine certainly did, it was 5cm grade 3. there was one palpable lymphnode, and they could see two on the pet scan, but these also became negaive at the end of the treatment (all 24 weeks of it!!). Try not to get too worked up about the necrosis thing (I still dwell on my very grim diagnosis, even afer the incredible outcome, bu I know I shouldn’t!!), it just means its fast growing, which you probably know already seen it is over 5cm, try to see on the bright side, that i should respond well to treatment! By the way what chemo are you having?

take care

hello webmum

I am having 4 x taxotere then 4 x something else (not sure what one but it will be 3 different types of chemo together).

It’s just difficult to poke and prod the breast because I am still sore after having the microdectomy. But the hard area so far doesn’t feel any different (but then i’ve only just had the 2nd dose so maybe it is too soon). I think they might do a mammo and ultrasound after the next one - although my cancer was not spotted by either of those tests beforehand so forgive me for not having much faith.

The onc told me yesterday that its not hormone receptive and I will probably have Herceptin following the end of chemo/mast/rads.

I am trying to look positive, some days I feel ok and others so down.

Hi
I had chemo first and would definitely recommend it! As mentioned before, just being able to monitor what is happening the tumour is great. For me, the tumour disappeared to such an extent that I didn’t need the op and went straight on to the radiotherapy - this was unexpected for everyone but what a bonus. I also felt that I had the chemo ‘out of the way’. I am 37 and the tumour was 4cm to start
Good luck with whatever you decide
xx