Confused

Hi - 7 years ago I had DCIS. Nothing invasive - had to have 4 ops to get a clear margin around it. Had radiotherapy. I have in June this year had a mastectomy because I now have Pagets breast cancer (a rare one but can come from DCIS). At the time of DCIS they said I could have gone through those 4 ops for no reason as it can do absolutely nothing BUT it can also grow into invasive cancer so that is why they offer further treatment to give you the best outcome. Hope I haven’t scared you with my story and I know it feels like they are going overboard but it’s better to play safe. Obviously you have to decide on your own treatment but consider it carefully xxx

Hi

Well, that is good news (in a way) isn't it?  Your DCIS was ER+ which means that it could have developed into ER+ IDC.  Ironically, when I was called for my first ever mammogram, I read the breast cancer care leaflet which talked about DCIS and how some women were diagnosed with DCIS and underwent operations needlessly because it might never have become anything.  I was really stressed and busy at that point and thought that I was bound to be one of those! ... glass half full thought there due to stress and VERY nearly didn't bother "wasting my time" and going for my mammogram as I felt completely well.  Oh boy, thank goodness I did!  As the explanation in the booklet was very much simplified I now realise.  
In actual fact I had DCIS and IDC, so I had no decisions to make, it was automatically made for me.  

Now I know that there are grades to consider as well.  Do you know the grade of your DCIS? grade 1 - 3, 3 being the fastest growing. I had IDC ER+ grade 2, and DCIS ER-, grade 3, so my DCIS could have grown into a different form of cancer than my IDC, very random! - but the DCIS was also fastest growing which in my mind made it more 'dangerous' to me than the IDC (ok, I know medically it wasn't, but I'm pretty sure at grade 3, I could have ended up with cancer very easily from a much larger area - 5.4cm of DCIS, 1.5cm of IDC.) No node involvement.

As has already been posted, it's worth thinking about the 'what if's'.  If you didn't have the treatment and then ended up with full blown cancer - how would you feel?  I hope she doesn't mind me highlighting her: Leolady56.  Take a look at her profile and you see what happened with her. 

The decision is yours obviously, but if you read posts on here and think that everyone has a bad time of radiotherapy or taking the tablets, then that isn't always the case. I was fine during radio. (15 sessions), just a bit of blistering under my breast and I have been fine on the tablets too.  

They get out the cancer/pre-cancerous cells, but there is always the possible chance that there are a few random cells elsewhere/ left and that is what the radio is for.  You are ER+, so your oestrogen levels are indusive to ER+ cancer, so the tablets will be there to try and prevent it happening. 

Your oncologist/team will have treated thousands of ladies and they wouldn't recommend treatment that they think is unnecessary.

Kindest wishes,

Hi thanks for the replies 

with my original biopsy at start of August I was told it was Invasive Grade 2 but when I went to get lumpectomy biopsy they said they just removed 12mm of pre cancerous cells. I’m just confused if I have had breast cancer or not ( don’t know why it’s important to me but it is ) 

Hi

My wife was found to have DCIS (next stage up from pre-cancerous cells) from her biopsy and this was found to be what they term as HER2+ positve. That meant mastectomy, 6 rounds of chemo a year of Herceptin 15 zaps of radiotherapy and 5 years of Letrozole.

So pleased that they found this from your biopsy at such an early stage - it is a very small step from precancerous to dcis so although you had a lumpectomy and are being offered rads and Tamoxifen as insurance and to ensure no single precancerous cells get missed you certainly dodged a bullet.

A lot of breast cancer cells are fed by oestrogen and the tamoxifen takes away their food supply.

Hope this helps with your confusion, do join the monthly breast group Radiotherapy Discussion when you get your dates through.

Take care, G n' J

I would want answers about biopsy results and then to check they removed the area biopsied . 

I had 11mm DCIS which was intermediate in biopsy and high after WLE.  I had 15 sessions of Radiotherapy.  No medications.

Just spoke to breast nurse turns out I had invasive ductual cancer very small area grade 2/3 AND DCIS grad high ( in fact she said very high) 12mm. The invasive is hormone positive so that’s why the hormone therepy and the radiation is to ensure they have it all.

makes more sense now!!! Nurses should tell patients lol