niece has DCIS, 3 lumpectomies and now needs mastectomy

[NinnyB]

my lovely niece found out she had DCIS after finding small lump 10months ago. Reassured it was early and non invasive. First lumpectomy didn’t have any clear margins, nor did the second. Breast surgeon said no need for mastectomy as so much healthy breast tissue would be removed unnecessarily. So she was persuaded to have 3rd lumpectomy. Today told needs mastectomy with exploration of lymph glands. Has anyone experienced anything like this? We are dumbfounded that despite their assurances each time that it could be excised cleanly she now needs radical mastectomy. We are also wanting help with deciding if she should ask for double mastectomy. Any help would be most welcome 🙏

[Happyrosie]

Your story is fairly shocking! However, I suppose it’s not as easy as we think: When I was first diagnosed, it was thought my lump was small enough to warrant a lumpectomy but they were not sure. I am extremely glad that I chose a full mastectomy as the lump turned out to be satsuma- sized . Huge, and would not have been removed in a lumpectomy. And I would have had to wait for three months for a full radical mastectomy

that was ten years ago.

As far as having them both off, this would only be necessary with certain types of cancer as I understand it. Please speak to one of more of the breast cancer charities.

[Zoony339]

I had routine mammogram recalled numerous biopsies after being inconclusive then told I had DCIS micro papillary refused me a mastectomy stating they only do breast conserving surgery for this but nothing to worry about ! Had lumpectomy waited for results to be told they never cleared margin so had to have a Wide excision no radiotherapy as was told not needed

15 months later felt 3 small lumps kept going back was fobbed off told it was fat necrosis then Mondors disease eventually after 3 months of constantly going back stating something was wrong plus they had got bigger I was given a biopsy and yep it had returned so had to have mastectomy and a few nodes removed that was in 2016 so keep positive but I wish they would listen to the woman and respect what she says

[Mymymy]

Hi NinnyB, did her breast surgeon explain the need to explore lymph glands if dcis is confirmed? Could MRI help confirm no spread to lymph glands? My dcis was discovered and confirmed via mammo, Ultrasound, MRI, and biopsy. I had 2 lumpectomies but the target clear margin could not be obtained. I then proceeded to a whole breast radiation with an extra boost on the tumor site. Your niece may want to ask if a radiation boost at the tumor site may help avoid the need for mastectomy. I would also suggest seeking a second opinion. Hope this helps.

[NinnyB in reply to Mymymy]

Very helpful, thank you

[NinnyB in reply to Mymymy]

wow that was a tough journey, so pleased you are at this side of it now. We will certainly explore the radiation boost but I think you’re right. Second opinion is needed. X

[smithtennyson]

My thoughts are with her. I've had two and 11 months later, a third is now under investigation, I'm dreading it !!

Unfortunately, without knowing the exact type of cancer she had, its difficult to say. Did she not have her lymph nodes investigated on her first lumpectomy and is she on a hormone therapy drug since having the operations?

[NinnyB in reply to smithtennyson]

Told it was DCIS. non invasive so no nodes involved at any stage, now they do need examining! At each lumpectomy told it was early non invasive but then it had spread each time. This third time Dr was so confident, ignored our discussion re mastectomy, and did breast re shaping making it a longer operation.She has a perfect shaped breast now which is just cruel to think it will be removed

We re sending you our best wishes and positive thoughts for your outcome to be good xx

[smithtennyson]

Was the hospital CMK ? They did the breast shaping on mine also, but they did take the first couple of lymph nodes out as a precaution, which I was glad that I knew for certain it had not spread. I thought they were all done as a precaution, but obviously not!! Mine was lobular though and the Consultant Surgeon who did most of the work was brilliant and I'd say second to none. Hope she gets it sorted xx

[NinnyB in reply to smithtennyson]

Thanks for your thoughts. We are in UK, local hospital. Thinking we need second opinion pretty soon x

[Nicu18]

Positive thoughts and prayers coming your way for your niece and you

[Redwrap]

Hello I don't know too much about mastectomies but if this were me I would seek a second opinion I hope everything goes well for your niece 🙏

[Poppies4life]

This is sad to hear for your niece, I was diagnosed with a 2cm DCIS from a routine mammogram so very grateful. Had been experiencing stabbing pains so explained that. Had no choice and had 10cm wide excision due to location near nipple, followed by 5 high dosage radiotherapy session which caused complications and a longer recovery. Was told that all margins were clear and my first year follow up routine mammogram showed nothing of great concern?! Not sure what message that is giving me. Having read your post ,even though told it is highly unlikely it will not return , I am not convinced that it won’t happen again. I wish her the best of luck on her journey and at the end of the day she knows her own body.