Partner has a lump after DCIS last year

hi

welcome to the online community, sorry you've had to come and find us

I too have lumpy dense breasts and if you can get a sympathetic radiologist, an ultrasound is the best way to double check anomalies, did she also have ultrasound on the right breast and the reconstructed left breast, she should have had but I've had to chase each time as they don't book because of staff shortages. I've had most of my treatment at the Marsden in Chelsea. 

Did she have chemo before surgery? The complete pathological response suggests she did but I would have expected her to be given Perjeta alongside the Herceptin? Which area are you in?

I was 'only' diagnosed with DCIS originally, and 'only' needed a mastectomy, it was the post surgery pathology that showed the invasive cancer and the Her2+ status, so I wasn't eligible for both as they're only given together prior to surgery. 

In my case the surgeons removed the main area of DCIS and reported clear margins but had actually failed to spot a separate tumour and if I hadn't realised that would have been a very quick recurrence !  Luckily (debate) it was painful and that's how I knew it was still there. 

I was also curious to know why nobody even glanced at the right breast up until last years mammogram and ultrasound ... I demand it now ... where the radiologist admitted that there was some suspicious calcifications in the right breast but since they hadn't changed in four years she wasn't too concerned and was keeping an eye on them, my breasts were both deemed equally suspicious previously and this seemed to confirm they had focused on the major issue I had with the left but overlooked the right. Maybe.

I had 4 x EC and 4 x T with H in 2015 then the rest of the H during 2016.

I've just read the post again and if they'd removed something from her right breast she would have had a scar ... I had a terrible time with nurses getting their lefts and rights mixed up. 

anyway let me know, not that it makes much difference to the outcome, you'll find out soon enough but I'm interested to know

Carolyn

xxx

 Hi Carolyn28

Thanks so much for your response, it’s so helpful to talk to people about things!

She did have an ultrasound on both breasts this week, in addition to the mammogram last month. Twice they said they thought the mystery lump was a papilloma but the technician, who wasn’t familiar with her case history at all, said he wanted there to be a biopsy “because I’ve been wrong before” – i.e. he thought something wasn’t cancerous before but it was, so he felt this needed checking out.

She had four initial rounds of chemo before surgery, as she was on a trial (ROSCO) this is what was planned. She had her surgery mid-August last year – mastectomy, immediate reconstruction, lymph node clearance and we understand they took out the non-cancerous papilloma too - and was then scanned again after surgery. That’s when she was told she had a complete pathologic response and therefore would not need any more chemotherapy. However, the full treatment plan including radiotherapy and Herceptin every three weeks would need to continue. We’re in London, and she did have Perjeta during her chemo.

She had scans of her breasts after surgery and before radiotherapy too. Separate to this she has a small cyst on her heart, which her initial cancer scans discovered, and has been seeing a specialist regarding whether this needs removing at a later date too. So she’s had various chest scans, as well as echocardiograms. As I say, she had a biopsy on her right side last year and there was no evidence of disease, and the papilloma was removed anyway.

Regarding the lump on her right being a scar, this is quite plausible. The person who was scanning her had absolutely no knowledge of her case, and was confused why there would be a lump on her right if her cancer was on her left. She did explain to him why but I think he maybe felt that the biopsy needed to go ahead anyway; we don’t have an issue with that of course it’s just puzzling that a lump could appear.

I hope we’ll have some idea of whether we’ll know more next week or not soon. I feel it’s more likely to be after Easter, because even if it’s benign the MDS team might want to discuss removing it anyway for peace of mind.

Of course, will be in touch if we hear anything! I hope it’s soon, the waiting around for news is one of the hardest things I find…

Best wishes to you also,

James

Update: we spoke to her nurse late on Friday afternoon and though the biopsy results won’t be back until the end of the month they’re 90% sure it’s a papilloma and nothing to worry about.

They said it was highly unlikely cancer could return given she was still in treatment, they just want to do the biopsy to be absolutely sure.

Thanks a lot for your response, we’re in for a little wait but have been told not to worry unduly. Easier said than done I know sometimes…

hi James

after all the errors in my diagnosis and treatment I'd be happy they're taking things seriously.

It is a worry, having a cancer diagnosis opens a door that can never be closed, introduces fears that can never be allayed ... how many analogies do we have for this ...

I didn't know that the Doors of Perception actually came from Blake's Marriage of Heaven and Hell.

Whatever happens it is better to find things early, it allows for the best and most appropriate and least impactful treatment plans.

Do you have some suitable distractions organised  ?

hugs

Carolyn

xx

any news ?

Hi there, apologies for the lateness in replying!

To add to the drama, we were due to go away on holiday (which we did) for a couple of weeks right before she had her biopsy results.

Very happy to report that the lump they found is benign (phew). It wasn't a papilloma, it was actually a fibroid around 1cm in size. They said that because it wasn't considered large (ie 3-4cm+) that no surgery would be needed. 

It's possible if it changes in size in the future they'd need to think about removing it though. Why didn't they find it before now? We believe that the chemo has made her breast tissue less dense, and so the lump was easier to spot post-chemo on her scans. 

She's now had her last Herceptin and is expecting to go back to work at some point over the summer. It's taken a long time to get to here but we're incredibly relieved (and thankful) for all the support we've had. 

Best wishes, and sorry for not responding sooner - didn't mean to keep anyone in suspense.

James