Recently diagnosed, Grade 3 and confused!

Hi just seen my consultant, advised stage 1 grade 2. Also to this I have a small area of dcis by my nipple 12mm. My invasive area is about 5cm away from the dcis area, he said its small about 1cm.  I am having an mri for a more detailed look at my breast and sizing, I know the size can show bigger on mri but he showed me my mammogram and is it small so fingers crossed, my scan on my lymph nodes was fine, I have large breasts so still hoping for a lumpectomy if not theraputic mammoplasty. I cannot feel the lump it showed on my mammogram.  This group has been a great mode of support, can anyone offer me any support on theraputic mammoplasty pls.  I am awaiting my Her 

xxx

Hi Lalaou,

I have a similar journey to you , but I am half way through chemo. I had a lumpectomy and sentinel node biopsy in January.Unfortunately,they found three out of the four lymph nodes had cancer in them which came as a shock! So then advised chemo , another op to remove the rest of nymph nodes ,radiation and the osteogenesis reducing tablets.

Like you ,I was in shocked and felt overwhelmed after the “second diagnosis” of the lymph node spread,but know that I am half way through my chemo.  I started in March and hopefully finish in August. So it is easier once you get a plan , i , as you have something to aim for,

.Breaking down the treatments  in stages gives you some control.

So , my plan was 6 months chemo, than  4-6 weeks before surgery, so you get your strength back and then radiation.

Please don’t worry, the time frame is normal and the chemo will pick up any cancer cells.

Hopefully, this hads reassured you a little.but if not this  is such a great site for help, support and great advise

Thanks everyone for your comments and support so far.

I have now received a bit more information as I was copied into a letter sent to my GP but this refers to the lump as 44mm! So what started off as 'just over 20mm', then increased to 26mm, then 30mm, then 37mm based on the pre-op MRI scan is now even bigger than stated at the last consultation. I've had some brief contact with my nurse to ask about the sizing and was told that it isn't unusual for differences in sizes to occur due to different imaging mediums, and sizing being analysed in different ways, but if that is the case how do they decide the best surgery/treatment options?  I will be hopefully speaking to the nurse again prior to my oncology appointment to answer my outstanding queries but I don't understand why I was initially told that the tumour was small, and 'had been caught early' and was Stage 1, when they still don't seem to know exactly how large it actually is. Has anyone else had such big differences in sizing?

With regards the lymph nodes, the letter refers to the 'potentially higher risks of full axillary clearance against radiotherapy' and states that I have to think about the surgical options prior to the oncology appointment. I understand that they can only tell for certain whether cancer is in the other lymph nodes by removing them so presumably choosing just the radiotherapy option - and not knowing whether the cancer has all been removed or not - would be more risky than the full axillary clearance option? I have asked for a copy of the pathology/histology report and was told this will be provided at the oncology appointment so I'm still in the dark about about the size of the margins and amount of cancer found in the one lymph node that was removed. Has anyone else had to make a decision about full axillary removal versus radiotherapy and if so what sort of things did you consider? I appreciate that these type of decisions are based on individual circumstances but it seems as though I am being asked to make decisions without having the full picture so any thoughts/input from those who have had similar experiences would be useful.  Thanks x

Hi LalaLou. I am really sorry that you find yourself in this position. It doesn’t seem right for you to decide anyway. Yes a full report and a consultation with your oncologist is certainly needed.  I wish you well. Thinking of you. xx

Hi lalalou sorry to ask, but can I ask what has asked from the beginning pls, sending hugs xx

Thanks Nineteen. I've now had a chat with the nurse and that has made things a bit clearer. I won't have to make any decisions about the lymph nodes at the moment (wording on letter not great!) With regards sizing, 44mm is the size of the removed tumour and there were no clear margins so the actual size is still not known. Apparently MRI sizing is a good indication but things like shadowing can prevent the exact size being known. When they conduct a re-excision they plan to take a good sized area of tissue and hope that there will be clear margins but if not then a mastectomy may be considered. If the upcoming bone & CT scans show it has spread elsewhere then there will be a re-think of the treatment plan so fingers crossed everything is clear x

Hi Sharon - what is it that you'd like to know? x

Hi  how has your diagnosis changed pls, was your lymph node scan normal xxx

Does anyone know why vacuum biopsies are used to diagnose, I understand they take more tissue, is this because tumour is small, or cannot be seen on ultrasound many thanks xx

My overall diagnosis is the same - grade 3, hormone reception HER negative - but the treatment plan has changed. The ultrasound and MRI scans showed the lymph nodes as normal but the sentinel node biopsy, which was performed at the same time as the lumpectomy, identified cancer in one out of the three lymph nodes which were removed. The initial plan was radiotherapy but because of the cancer in the lymph node this has now changed to 6 months chemo followed by more surgery then radiotherapy. If small amounts of cancer are in the lymph nodes then this won't be spotted during scans, it will only be identified by biopsy.

With regards your question about a vacuum biopsy, I understand that this is simply a newer way of taking a biopsy than a core needle biopsy. Like you say, it takes more tissue at a time than a single needle biopsy, so I guess it's a simpler procedure, but it's not connected to the size of the tumour. I think I might have had a vacuum biopsy - did it feel like a stapler?