neo-adjuvant chemo: a warning

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Hi Everyone

This picks up on an issue that has been mentioned by others, but having spoken to my surgeon and BC nurse today I felt it needed to be stated again (and again, and again).

One of the reasons that neo-adjuvant treatment is given is to reduce the size of lumps prior to surgery so that women who have larger tumours that are borderline for lumpectomy/mastectomy have a chance of getting away with less surgery.

Some of the chemo drugs are very good at shrinking tumours, even to the point of them disappearing from sight. This is where the warning comes in. If the surgeon can’t see the tumour they may have to take away a large amount of extra tissue (or even the whole breast) because they have to be sure they have removed a safe margin of healthy tissue around where it was. This is not what you expect once you know the chemo is working well.

If you are on a drugs trial (e.g. neo-tango, like me), the trial protocol states that all tumours should be marked by inserting small metal pins before chemo starts, so that if they disappear the surgeon knows where they were. However, the drugs trial DOES NOT PAY THE UNIT for doing this, and because of this some centres (like mine) are reluctant to insert markers as a matter of routine. It is an expensive extra procedure, requiring a quite lengthy appointment with the hard-pressed radiographers and an additional mammogram to check the marker is in the right place.

BE AWARE OF THIS. I had an ultrasound today after just 2 months of pax/gem chemo and my lump has shrunk from almost 3 cms to less than 1 cm. I am having markers put in next week.

If you have an unmarked tumour that starts to shrink significantly, please do contact your bc nurse and ask to have it marked. The alternative may be a mastectomy EVEN THOUGH THE LUMP HAS GONE. This is not what we want or deserve, and should not be necessary.

Spread the word.

Cheers. Stockbeck

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Hi stockbeck

Thank you so much for posting this, it’s like a breath of fresh air to hear someone backing up what I have been saying since December last year. What a shame though that I ony found out about the insertion of pins when it was too late!

I find it very upsetting when I post on here and others trivalise what I am saying and trying to warn others about, I was one of those ‘lucky’ ones who got 110% response and was lucky enough to get away… NOT… with a Mastectomy and it hurts inside still, even after 7 months. I am stuck in a blasted rut that I cannot drag myself out of even though I’m now cured (ha, ha, hee, hee…) according to my Onc!!!

I shall be prinnting this and loads of other bits on here about this subject to provide to my soclicitor to back up my arguments with the trust.

Good luck with your treatment.

Cheers
Lynn

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Yes I think its very important that women know this. Good luck with your campaign. I know that Breakthrough Breast Cancer are currently reviewing their treatment guidlines and you might want to contact them about these points.

I also think its important that women also know that neo adjuvant chemo has two purposes…to shrink the tumour and provide information about how well the tumour repons to treatment.

best wishes

Jane

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I am writing this on a high after just having my dressing off after a WLE and being presented with an almost perfect Left breast, with the only scar around my nipple, only just visible after 10 days. (my lymph node scar is large, ugly, inflamed and infected but that is another story and would have happened whether I had a WLE or mastectomy) I aplogise to Lynn (as she has communicted with me before), if I am being insensitive! I totally understand how she must feel, I have had a sleepless week, awaiting my results, dreading having to have a mastectomy if things didn’t go to plan.

I would certainly recommend having chemo first, but I was lucky I responded very quickly to chemo, my tumour completely disappeared until it was undetectable on ultrasound. I went early (on Lynns advice) to have markers inserted, but was lucky to have a mole right next to the tumour. My margins were clear and I am delighted with my surgery my breast looks ‘normal’ is still slightly swollen and I know is affected by radiation when i start that, but I appreciate I am lucky to not need any further surgery.

So I also stress the importance of getting markers in plenty of time (do some places do tatoos like for radiotherapy?)my hospital are very good and markers are routinely done.

If making more people aware can prevent unwanted mastectomies and the associated heartaches it is a good thing.

When I began this journey at the beginning of the year I could never have believed that my breast could have been preserved to such an extent.

Another benefit of chemo first worth mentioning is I was unaware how many lymph nodes were infected. We thought just one during 6 months of chemo, but after having surgery evidence of cancer was found in 10. If I had known that at the beginning I would have had a worse prognosis and more worries. I was told at a later date, when all of the cancer had by then been zapped/removed.

Hope my story helps others, it is possible to come though breast cancer with your breasts almost intact.

Nicky (still celebrating)

p.s.sorry must add I wanted very much to keep my breast being only 41, but I appreciate some people (my Mum included) just want to get rid of it and others don’t always have a choice so I hope I haven’t offended anybody or upset anybody who is not happy with the results of their lumpectomy.

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I think you are highlighting something which is really important and Ive often wondered about why women seemed to be having chemo first, some people’s lumps shrinking massively, and then them still having mastectomies later - although I do see that it gives a chance to see how the chemotherapy is working.

Nicky41: Im a bit confused about what you are saying about your lymph nodes. Why did they think it was just in one and are you saying that after chemo there was cancer in 10 of the lymph nodes? Was it just microscopic by the time you got to surgery?
I think its fantastic that you only have a little scar, I had to have a mastectomy due to my lump which was only small (1.4cm) being just behind my nipple - I also have small breasts so there you go, by the time you take a good lump out there wouldnt have been much left!

Pauline

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Hi Stockbeck

I was gutted when I read your post. I too am on the neotango trial. My tumour started at 11cm by 10cm with evidence of the lymphs being affected as well, it is grade 3 and apparantly very invasive. The oncolgists told me that there were two reasons for having chemo first, to shrink the tumour but mainly to get rid of any stray cells (liver lungs etc) I was never given the option of markers or anything other than a full mastectomy and node clearance. After the chemo my MRI scans showed no evidence of any tumours but last week I had a the full op.
I don’t suppose there is much I can do now and I guess the most important thing is that hopefully I will be free of this wicked disease. Never the less we are not given enough information and do not have enough choice. A much greater understanding is needed and it is infurating that are options are determined by cost.
Thanks for your post and I hope it is not too late for others.

Chanel

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I too had neo adj chemo and have now had my mastectomy to be told that after 6 x FEC and no interim scans or offers of markers - the chemo has barely shrunk my tumour and it was still 9-10cm.

If I had known that it was possible to have markers I would have insisted on them and the interim scan and I would not have wasted all this time.

Very frustrating and thanks for rasing this information for others!

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Nicky,
That is amazing that your nodes had cancer and now it is gone, that must give us all real hope about the effectiveness of chemo. I was really dreading my last 3 chemos which are going to be Taxotere but all this talk about shrinking and disappearing cancers has made me think that it will all be worth it! I know that there can still be recurrences but at least this gives us a really good shot of getting rid of it.

Pauline