Mastectomy then chemo or vice versa??

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Hi folks,

Still hurtling down my astonishing voyage of discovery since finding this lump (2nd July!). Had wide local excision and removal of lymph nodes on 25th July and have to say that I am mighty relieved by yesterday’s results - scans clear; only 1 or 19 nodes affected; and it is oestrogen receptive (which presumably means they can chuck hormone treatment at it as well??).

The relief of having the huge well of lymphatic fluid drained from under my armpit was also considerable (Doh! hadn’t noticed this rather alarming bulge, though had wondered why I was feeling a bit uncomfortable . . . .!!!). Notice, however, that it’s filling up again.

Not all great news. Lump larger than anticipated (4.5cm), cancer in breast multifocal and large field changes (?) throughout breast. So it has to go. They had, actually, warned me about this possibility last week so I had adjusted to this. I’ve been focusing on the advantages of replacing my saggy FFs (breastfeeding the 5 kids for a total of 12 years has brought these down somewhere below my knees) with a natty pair of Es . . . Is this shallow???!!!

Anyway, the consultant said that the team had agreed to chemo, then mastectomy, then radiotherapy, then the reconstruction. I did ask about the relative benefits of just getting the mastectomy over and done with first (not least because I don’t think I can see an oncologist for 2-3 weeks). He is happy to do this on the 15th August but is chasing up to see if I can see an oncologist and get on chemo quicker - in which case I’ll do the latter.

I get the impression that his offer to do the surgery on the 15th was partly a response to what he thought was my psychological need to get the offending breast OFF! In fact, I’ve proved to be far more adaptable than anybody (myself included) expected and i just want to do what’s best clinically.

Does anybody have any experience of this question??? My husband’s concern is that if I have the mastectomy first (is this what the acronym mx means??), it may delay chemo for another few weeks. My concern is that I’ll feel too shattered after the chemo to have the op that quickly and that if the chemo doesn’t work I’ve got cancer in my breast that might still spread (though obviously not through my non existent lymph nodes).

I don’t particularly want to ‘shape’ this decision too much - I’m happy to rely on the clinicians to tell me what to do. I’m not being ‘little womanly’ about this. It’s just that if I change the course of action and things go wrong, it will be hard to live with myself (though i might not of course have to . . . .!!!). But they seem to be giving me a bit of a ‘choice’ here and I’m a bit confused.

Any advice from you lovely ladies? I think Lemongrove suggested some US research that pointed to chemo first??

Liviaxx

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Hi Livia,
Decesions, decesions ha ! Well I can not give you advice just my experiences.My lymph glands were up at the time and my lump was quite big, so Iasked about having chemo first in order to try and avoid a mx (masectomy)and to shrink the tumour.
It didn’t work as planned and I had to have the mx anyway ! However they waited a month from my last chemo until the op,and I was told that that was standard practice. I wanted it all to happen quicker and as I was a private patient thought naively that it could !!
Psychologically having the chemo first was a better option for me. In my head It felt that It would stop the cancer spreading into my lymph glands and killing the tumour at the same time. Not only that chemo was the bit that i was dreading most, having heard the horror stories and losing my hair. ( It wasn’t that bad in the end )
On the other hand having a mx first gets the critter out and chemo mops up afterwards !! You just have to listen to what they advise you and go with your gut feeling. It’s your body, your journey and your life. Good luck with everything and I promise that there is light at the end of the tunnel …i have almost finished !!
Michelle xx

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Hi there, so sorry to read your news.

Breast uplift shallow? Nah!

Anyway, my story is not the same as yours but I did have my chemo first then surgery etc. My tumour was very large and located slap bang in the middle of my breast and this meant mastectomy (Mx) was the only option surgically. My surgeon who seems a very wise man, recommended chemo first to shrink the tumour (it worked pretty well) and then surgery. What I was told is that there is a ‘window’ of about 2 weeks for surgery which is 4-5 weeks after chemo completes (I am sure it’s not that precise, but that’s what they aim at). By this I mean 4-5 weeks after the last dose is administered, so technically only 2 weeks after the regime ends.

I think if you do surgery first it’s about 6 weeks recovery then chemo.

What the surgeon told me at the time is that his view is that chemo first is better, where appropriate, but that the research to date is inconclusive (not enough of us) and opinions vary. If I had wanted surgery first, he’d have done that. I went with his advice and it worked for me.

I had a skin sparing mastectomy and immediate LD flap reconstruction in February this year and started my radiotherapy about 7 weeks later (there was an admin mess up so I was delayed by a week, should have been 6).

Post operatively I was told that 80% of my tumour had been destroyed by the chemo and that 80% of what was left was scar tissue - so I was pleased.

I am now on Tamoxifen as I am moderatley ER and PR (hormone) receptive.

This autumn I will hopefully get my ‘finishing touches’ of symmetry surgery and nipple reconstruction! See, a vain vicar!

This is long and waffly but I hope it helps.

Just decide what is right for you.

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I was the opposite to Michelle. Was offered the choice in the hope that the lump may shrink but I just wanted rid of the damn thing so chose to have a mastectomy and then chemo. And my consultant was glad I did. The lump was 4.5 with margins … a total of 6 cms - so there was no way it would have shrunk enough to just take the lump (I have small boobs). I felt I could move on quicker once it was taken away and the chemo started a few weeks later - I recovered physically and emotionally very quickly from mx and just wanted to get on with it all. I also had total node clearance but only 1 in 10 had cancer … so I don’t need rads. Its a tough decision but in your heart you will know what you want to do.

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Recovery from surgery was four weeks for me … would have been three weeks but I had something planned so didn’t want to start chemo until after that!

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Hello Livia,

I am having my chemo first. Is is horrible thinking about this gremlin brooding away inside you - but you do get regular checks and if the chemo isn’t working, they swap you onto a different chemo.

By doing it this way you KNOW whether or not the chemo is working. If you have the mastectomy first you will never know whether the cells (if any) that escaped round your body are responding to the chemo you had. I’m just hoping I’ll end up like some other ladies on here who have had a complete pathological response - their surgery showed NO alive cancer cells at all. That’s my dream! Although I have a very lump, so don’t think it’s likely - have been told a 40% chance of this. Then I can be hopeful that any other b*ggers elsewhere in my body will have been zapped too (although realise that’s not quite so simple).

Obviously if you had no lymph or vascular invasion then this wouldn’t be quite so big a worry.

I guess you can see it as a gauge for measuring the effectiveness of chemo.

I’m not sure how tired you’ll feel after the surgery. I have felt knackered through chemo so am quite glad I came in to face it all fit and healthy. I usually feel better on week 2 after infusion, so would hope that by week 4 I’ll be feeling fine. But then it’s recovery from surgery and then rads…so it does go on a bit!!

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Thanks ladies. You are all wonderful (and thanks for not thinking me shallow!!).

Latest update - oncologist can see me TOMORROW (I can’t believe the speed at which my local NHS hospital works). I presume this will mean that chemo can proceed fairly quickly (only remaining problem being this rapidly expanding WELL in my armpit (AAARRGH!).

It’s a really difficult decision. One friend said that she was so overwhelmed (physically and psychologically) by the chemo that she just couldn’t have coped with the mastectomy afterwards. Then again, other people don’t seem to have such a terrible time (famous last words . . . ). Another potential downside of having the chemo first is that, having removed MOST of the tumour in the breast (not clear margins and signs of bits elsewhere), I’m not sure how much we will be able to track ‘progress’ (i.e. know if the chemo is working). This is a big source of freak out for me - in case the chemo is not particularly effective and I’ve left this breast with stuff potentially still growing - and spreading - in it.

Ghastly business isn’t it?! That said, I am truly touched by the kindness of people, including people like you who take the time to answer questions like this. Thank you!

Liviaxx

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Found it! Have pm’d you but now I know where you are!

My thoughts: I wasn’t in a panic, well not total panic! And so I had a think and asked for chemo then op - with the idea being that I would then only be coping with one thing at a time. It’s worked really well for me. I had immediate recon and will start rads in a few weeks. I know this isn’t normal practise but is becoming more common, it is possible but does take a bit more thought in the planning of both surgery and rads. There was a programme on woman’s hour about recons a few weeks ago you might be able to find it in their archives.

Doing it this way round has also meant the physical recovery is better (for me anyway) because I’ve got the energy to get up and move around. I’ve also got myself into physio and am having twice weekly massages to help ease the cording and tightening, the physics have said that I’m unusual in as much that they don’t usually see patients like me until months/years later because they usually go straight into chemo and so they’re not referred.

I’m 6 weeks on from my op - driving, walking, wearing my clothes (couldn’t for a whole dye to arm movement being restricted). Babs (my recon) is settling in nicely and we’re getting along just swell (pun intended).

Hope you catch this before you go out for your meeting, but if not you’ll have made a decision your happy with I’m sure.

Good luck!!

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HI
I had a large lump, lobular, sitting in the middle of my left breast, and although they put me on Tamoxifen to see if they could shrink the lump, an MX was always going to be the outcome. Then chemo, then rads. I wasn’t offered chemo first. I also want reconstruction but was told that a temporary tissue expander would be put in at the time of the MX because rads may damage the permanent recon, whicheer one I plump for.

I had my MX on the 19th July, also skin sparing with tissue expander. it went well but I know now why they say it’s a four week recoery…quite swollen, prickly sore skin, sleeping a LOT! but actually apart from that it’s really not as bad as I thought it was going to be. I’ll start chemo in about 2 to 3 weeks - still waiting for date. But if I could hae had an immediate recon at the time I would certainly hae gone for this - the tissue expander that’s been fitted is quite a weird shape, the port at the side of it is really the most tender area, and I’m not looking forward to the expanding of it! And then you must go through another major op for the recon. Staycalmandcarryon had her recon at the same time and is going to hae rads - and I’m really jealous of her!

But I think I’m quite glad I had the MX oer with by the time I get chemo. I had traces of cancer in one of the three nodes they took out during the MX - so the thinking is that the chemo will mop up any floating cells that are there rather than taking any more nodes out.

Sorry about the typos - one of the keys on my keyboard has stopped working - the one between u and w!

I wish you all the best with your decision and your appt at the hospital

Impatiens