Quite freaked out - disappearing tumour?!

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Hi everyone - please, has anybody experienced this, or at least heard of it happening? I’m really confused - here’s the story.

I just got back from what I thought would be a signing-off-after-surgery appointment (operation 21st December), but the surgeon informed me that ‘the pathologist can’t find the tumour’ in the tissue they removed from my breast. He/ she has been cutting & chopping but it doesn’t appear to be there.
What the ****?!

My G1 tubular tumour was small but hard. And it was definitely there the night before my operation! The surgeon commented that as it was small, it’s possible that the three samples taken during the biopsy were enough to remove it, and the subsequent hardness was just a lump of bruised tissue. But the biopsy was on November 7th - that’s six whole weeks before my operation!
Also, two days before the op I had to have a second biopsy on a second lump (found during the MRI) on the other side of the same breast, and they did an ultrasound that day to locate the lump - and the original lump was definitely still there, and still the same shape and size, I remember noticing with joy that in six weeks it hadn’t grown. (The second lump turned out to be nothing.)

So now I have to wait till next Friday to give the pathologist another week to find the lump - if not I’ll have to have an ultrasound to see, well, if it’s still inside - OMG!

I’m swinging between feeling a. completely ridiculous - maybe I never had cancer in the first place; and b. rather angry - maybe they operated unnecessarily or maybe they operated badly and will have to go in again. The surgeon also said that might be a possibility.

When I asked him if he’d seen other cases like this, he said yes, but didn’t elaborate - and I was just a bit freaked out and not able to insist he tell me more. Also, there was a student surgeon there too, who also had an un-explained feel of everything, plus the usual nurse wasn’t there so I didn’t feel very confident asking more questions. The surgeon also drained my breast of liquid, which I didn’t realise he’d be doing.

Finally, after having assured me at two different meetings that the radiotherapy would start around a month after the operation, the surgeon said today that the treatment would be two months, even three months from the op date. Is that normal? I’ve already arranged quite a bit around it, I guess I should have known better.

Sorry to sound so moany, I know loads of you are going through horrendous times.
FC
XO

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Hi Firecracker,

I have no experience of this happening - sounds as though it is a very worrying time for you and the uncertainty is horrible. I am, however, another tubular cancer person which is why I am answering. I was told that tubular is very slow growing and bc tends to be small. Mine was 8mm and they reckon had probably been there for around three years.I needed a wire excision so that they could find it during the op as there was no palpable lump.

I guess if yours was even smaller, it could well have been removed in a biopsy sample, I have heard of them being only a few mm big. Hopefully it will be discovered to have been removed and panic over, but just to say, I needed a re-excision (as I had DCIS around it) and was told that, given how slow growing it was, absolutely nothing would have happened with it that caused more of a threat during the time we were talking about from dx to end of two bouts of surgery. Even if - and I know this isn’t an attractive thought - they had to do another day surgery to tidy up something that is left, it isn’t something that is very aggressive so hopefully it would be more of a temporary, short-term than long-term problem.

Hope it is sorted out soon xx

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Thanks so much, Mary grace, that’s really helped me.

My tumour was/ is about the same size, so a fair amount would presumably have been taken out during the biopsy - but that was a long time ago, and the lump was still there six weeks later, just before the operation. And it was definitely palpable, as the surgeon reaffirmed today - I think he was also rather confused by the situation.

Anyway, the main thing, as you say, is that even if the most annoying scenario comes about and I have to have another lumpectomy, it’ll just be that - really annoying, but not life-threatening.

Take care, and thanks again,
FC
XO

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Hi FC,

No I certainly didn’t want another WLE or re-excision but it was an even shorter op than the first one and the scar looked no different than after the first one, just a bit of bruising for a few days but my SNB hurt a lot more in any case and at least they didn’t touch that.

It is a horrible time but you are very much where I was a year ago and I am now No Evidence of Disease, two surgeries done, rads was no big deal and it has gone hopefully never to return. At least tubular has an excellent prognosis and is hormone positive so can be blocked with tamoxifen.

Hope it gets sorted out for you soon

xx

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I am similar but not the same as im cup which is cancer of unknown primary presumed breast. All i had was cancer cells in the lymph node to this day they still havent found the tumour presumed it has left the body on its own and the lymph cells were early dissemination from the tumour where ever it was.On a bright note i have been in remission for 12 months now and finishing Herceptin next week. Try not to worry and take it as a good omen. They searched for my tumour for months.

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Thanks Mary grace & Hatty - it’s so, so reassuring being able to get some feedback about all this, and know that other women have been through a very similar experience.

As you say, Hatty, I should take it as a good sign that maybe the cancer has wandered of by itself, instead of worrying that it’s hiding somewhere, determined to cause more trouble. But wow, they actually searched for months?

And Mary, how were you with the tamoxifen? I’ve heard it can cause depression and quite major weight gain. Or maybe that’s herceptin… And thanks for the reassurance about radiotherapy been fairly straight forward.

FC
XO

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Hi FC, I haven’t gained any weight, lost my sex drive or anything horrible but I am a bit creaky first thing and I got a few hot flushes but they are settling down now. It hasn’t caused me any depression or anything xx

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Hello firecracker another Mary here
I went for my pre-op today and the surgeon and his intern could not find my lump …so they are going to do a wire localisation to make certain they find it at surgery!I have a dimple on my breast (which is what alerted me to a problem)and the lump is meant to be below that but I’ve never ever felt it.
I had just given permission for them to use my left over bits for research (its a major research centre)and it looks like there wont be much!
Best of luck with whatever happens with yours.

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FC there wasn’t somebody having a biopsy the same day who was told the didn’t have cancer but now mysteriously has? Mistakes can happen and although highly unlikely could it be at all possible the results were mixed up? Not very reassuring I know but I have heard of such incidences occurring rarely… Perhaps they could do a DNA check on you and the biopsy material to confirm you are one and the same.

An 8mm tumour is unlikely to be completely removed on biopsy… As although it’s small it isn’t eensy weensy… Or do you know how many cores they took I guess if they took 10 or 12 they potentially could have got it all but if it’s the routine 3 or 4 you would expect a fair bit still to be there.

Take care

Lx

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Thanks everyone!

Lulu - well that possibility did occur to me, and that’s why I was freaked out really, the idea that they may have operated for no reason.

BUT - and it’s a big one! My oldest sister (10 years older than me) was also diagnosed with virtually the same type of breast cancer at exactly the same time (in November) - and she lives in a different country, has a different name, etc, and we were both diagnosed without the other one knowing. Weird, huh?

So, terrible though it is that she’s also dealing with bc, it’s actually been strangely reassuring for me that she is - otherwise I would think I was going mad!
X

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That is such a strange coincidence… A couple of times iv had ladies who were sisters being diagnosed within a few weeks of each other… Makes you wonder if it’s some environmental factor they have both been exposed to.

Hope you get to the bottom of it.

Lulu xxx