Some reassurance please

Hi,this is my first post though i have been lurking since my Mum was diagnosed in January. We have found loads of tips and advice here but now need reassurance since her post op (mx) results.
After 6 chemo (3 FEC and 3 Docitaxel) she had a mastectomy 2 weeks ago, the surgeon found an increase in the tumor when he operated and seems to be questioning the efficiency of the chemo. Understandably my Mum is beside herself…what does this mean ? She’s due to start 3 weeks of radiotherapy mid August, and will have Herceptin treatment for at least a year. Should we be concerned or is this a case of too much info causing unnecessary worry?
Would love to hear from anyone who’s had the same experience or just anyone able to reassure us.
Thankyou so much for listening,

Rach could you clarify? Do you mean that after having had chemo, the tumour had increased in size? I suspect that this is what you are saying, but just wanted to be sure.

Rach is your mum due to see her onc again soon? I also had my chemo before the mastectomy and had been warned that if the mx lab results were not as good as we wanted i might have to have some more chemo after the op… I would give her breast cancer nurse a ring and see if your mum is now meant to be seeing the onc again… they should have discussed your mum’s results at a meeting where they all decide if more treatment is needed…

Theresa x

Rach I think the first thing I would ask is how certain they were of the size of the tumour to start with. In my case the lumpectomy revealed a larger tumour that predicted (went from 15mm at dx to 25mm after surgery), and I know of several others who have experienced the same thing. I wonder if this could be a factor in your mum’s case?

Hi ladies, thanks so much for your replies. Upto now we’ve been getting through this terrible time fairly solo. This forum has been a great help, we’ve consulted it often for tips during chemo and op.
Mum went for pre op tests a few weeks ago and was told that they couldn’t feel the lump anymore, needless to say we took this as great news and expected post op feedback to be all positive.
The surgeon said that according to the preliminary scans the tumor appeared to be about 4cm and post op was 6cm They didn’t mention changing her treatment plan and are continuing with radiotherapy in 4 weeks.
She’s been a real trojan throughout this but is now feeling pretty down (though the meeting with surgeon was only yesterday). I just want to give her some great tales of ladies who have been in the same boat and are now 10/20 years down the line, living life to the full.
Thankyou so much for your replies, they really help.
Rach xxx
Thankyou so much for your replies, i live abroad and try to get home

Hi Rach,

I can’t offer reassurance from 10 yrs + as I’m still undergoing treatment but you might find my story helpful.

My initial tumour size was 15cm (!!!) and the treatment plan was 4 x FEC, 12 x weekly Paclitaxol followed my Mx and ANC (at least 4-5 nodes affected at diagnosis) then 3 weeks of rads.

I had a scan after completeing the FEC and the tumour had reduced to just 4cm, it was marked with a clip in case it vanished completely before surgery. I then switched to the Taxol and had 5 weeks of that before having another scan where it was found that the tumour was beginning to grow again.

I was given 3 options:

  1. Continue with the Taxol as planned as it could still be having a positive effect away from the tumour site

  2. Switch back to FEC or to another chemo drug and hope for more shrinkage (but no guarantee)

  3. Stop chemo and continue with the rest of the treatment plan then consider more chemo after radiotherapy was complete.

I opted for no3 as I didn’t want to lose the window of opportunity for surgery given the size of my original tumour. Mx was successful with wide margins and the pathology showed that all my lymph nodes were tumour free due to the chemo. I had radiotherapy and am now part way through 3 more cycles of FEC as a precautionary measure as I didn’t have a full course of chemo initially.

So based on my experience I’d say that unless your mum had a scan before switching chemo there is no way to be sure that both the FEC and the Docitaxol were ineffective and even if they didn’t help the initial tumour they may have cleared any distant cells.

Has your mum had any scan to check for secondaries - I had MRI, bone and CT scans at diagnosis - and were any nodes affected? If they were all clear and they got clear margins with the mastectomy then there is a good chance that she is cancer free and even though the chemo may reduce the likelihood of recurrance there is still a good chance that she will have no further problems especially as she will be having herceptin to improve her odds.

The scan I had when my tumour started to grow showed that there were some areas of dead tissue within the tumour so I would ask if the pathology report gives any info as to whether the chemo had any effect on the tumour cells. There may have been more benefit than is immediately apparent.

If your Mum has had the tumour removed, nodes are clear (or have been cleared) and scans are clear then, regardless of what the future may hold, she has no evidence of disease (NED) which is where we would all like to be. Hold onto that and concentrate on treatments (rads, herceptin) that can help keep it that way rather than worrying about ones that may not.

Remember that many people have chemo after surgery, there are probably a number of them for whom it is also ineffective but they have no way of knowing, their situation is the same as your mum’s they just don’t know it. It doesn’t make any difference to their treatment.

Good luck to your Mum (and you) with the rest of her treatment.


Just bumping this up as such a useful last post and wanted to make sure the OP saw it.

Hi Rach not sure how helpful this will be. My BC was said to be 12mm after early u/s and biopsy axillary node was involved. Onc recommended chemo first. Had 3 then MRI scan showed no respose.Changed chemo and had 3 more Then MRI scan still showed no response(no-one was ever able to feel the tumour) Onc and surgeon together recommended WLE and ANC with a possibility of more chemo to follow. On Thurs last I got to see my pathology report although I had been told after surgery that it looked like there had been some response, and tumour was 2.2 cms at histology.I was assured that it had not grown during chemo and that the biopsy omly shwed a 'snap-shot’It was a relief that there had infact been some response although having a Grade 1 BC meant that tumour less likely to respond.No more chemo is recommended and I am waiting for a date for rads.I think as you can see from what the other ladies have said we all have had very different experiences and if your mum can have her questions written out for Onc and BCN that would help her clear up some of the confusion this seems to be causing for both of you.Take care Jackie

Bumping … For jacqui

Thanks midge

Thanks again ladies. Very helpful advice. xxx