Forum Discussion

Jenny_M's avatar
Jenny_M
Member
12 years ago

Help please

Hello

Can anybody help me understand my diagnosis.

I have been told by core biopsy at second ultra sound guided that I have an invasive ductal carcinoma NOT in situ.  This US said other mass of no significant finding.

The first US at a different radiology provided said  2 neoplasms of 6.8mm and 24mm.

Mammogram just said ''mass'' and where it was which looks to me like the 6.8mm one.

I am a public patient and the surgeon I got admitted to favouring radical approach ie; masectomy.  He got me to have a bone scan and CT scan of chest, lung and abdomen both returning no metestes - request was for searching for metestes.

I had all of 20 minutes with the surgeon and same next appointment with registrar and have been booked into a masectomy for 6 June.

Can anyone with a similar diagnosis advise what they did.  I am HR2 negative, ER positive and PR positive

I am lost and the registrar and surgeon who is not listed as breast surgeon on Royal Australian College of Surgeons.

I just feel as though everything has been rushed without explaining any alternatives such as breast conserving surgery.

Would appreciate any help or direction to someone I can talk to.

Jenny

 

 

15 Replies

  • There is so much to take in from diagnosis isn't there? I can only describe my experience for you, so hope some of this helps.

    My tumour was at the far side of the breast, near the surface and away from the nipple. It looked like a good candidate for a lumpectomy, so that's what I had. From the ultrasound and mammogram it appeared that I had a 28mm tumour. Further tests on the breast tissue removed during the lumpectomy discovered that the tumour was actually two that had possibly fused so it was not isolated to a duct. It was invasive and it was also closer to 50mm in total, which is more serious but still early breast cancer. I also had an axillary clearance as the nodes had tested positive. Usually, the surgeon would go in again within two weeks to remove more tissue.

    It was explained to me that if the margins aren't clear in the lumpectomy, then the surgeon can go in a second time to take more out and then you can have an MRI to see how things go but my surgeon said that if the margins weren't clear the second time, I would have a higher risk of recurrence. Since most of the affected tissue has already been taken, it would be difficult to guarantee clear margins and that would mean a third surgery for a full mastectomy.  I chose to go with a full mastectomy because it simplified my risk factors. My original surgery was at the end of last November, so I expect further surgery was difficult to schedule in our town at the time and I was keen to get into chemotherapy before Christmas.

    So I have a full mastectomy booked for after my chemo but before my radiotherapy. 

    Since my total tumour was larger, it was Stage 3, Grade 3, I had 5 out of 18 nodes affected, I am hormone positive ER and PR +ve, but herceptin negative. My chemo treatment involved 4 cycles of AC (every three weeks) and 12 weekly cycles of Taxol - I have three left. After surgery when they finally know what they are dealing with, your oncologist will figure out the best regime to suit your situation and also whether radiotherapy will be helpful - it usually is. I will have 5-6 weeks of radiotherapy after I've healed from surgery. It is a long road, but I am travelling fine, even with some delays in chemo from low white blood cell counts.

    My McGrath Foundation breast care nurse has been fabulous to clarify what I don't understand and I hope you have somebody with similar expertise to talk to. I am talking again to my private breast surgeon prior to my mastectomy to clarify some issues relating to whether I go for a tissue sparing mastectomy for a reconstruction after radiotherapy.

    Hope this long post has been helpful. Good luck with your surgery. It is surprising how "doable" it all is in the end.

  • There is so much to take in from diagnosis isn't there? I can only describe my experience for you, so hope some of this helps.

    My tumour was at the far side of the breast, near the surface and away from the nipple. It looked like a good candidate for a lumpectomy, so that's what I had. From the ultrasound and mammogram it appeared that I had a 28mm tumour. Further tests on the breast tissue removed during the lumpectomy discovered that the tumour was actually two that had possibly fused so it was not isolated to a duct. It was invasive and it was also closer to 50mm in total, which is more serious but still early breast cancer. I also had an axillary clearance as the nodes had tested positive. Usually, the surgeon would go in again within two weeks to remove more tissue.

    It was explained to me that if the margins aren't clear in the lumpectomy, then the surgeon can go in a second time to take more out and then you can have an MRI to see how things go but my surgeon said that if the margins weren't clear the second time, I would have a higher risk of recurrence. Since most of the affected tissue has already been taken, it would be difficult to guarantee clear margins and that would mean a third surgery for a full mastectomy.  I chose to go with a full mastectomy because it simplified my risk factors. My original surgery was at the end of last November, so I expect further surgery was difficult to schedule in our town at the time and I was keen to get into chemotherapy before Christmas.

    So I have a full mastectomy booked for after my chemo but before my radiotherapy. 

    Since my total tumour was larger, it was Stage 3, Grade 3, I had 5 out of 18 nodes affected, I am hormone positive ER and PR +ve, but herceptin negative. My chemo treatment involved 4 cycles of AC (every three weeks) and 12 weekly cycles of Taxol - I have three left. After surgery when they finally know what they are dealing with, your oncologist will figure out the best regime to suit your situation and also whether radiotherapy will be helpful - it usually is. I will have 5-6 weeks of radiotherapy after I've healed from surgery. It is a long road, but I am travelling fine, even with some delays in chemo from low white blood cell counts.

    My McGrath Foundation breast care nurse has been fabulous to clarify what I don't understand and I hope you have somebody with similar expertise to talk to. I am talking again to my private breast surgeon prior to my mastectomy to clarify some issues relating to whether I go for a tissue sparing mastectomy for a reconstruction after radiotherapy.

    Hope this long post has been helpful. Good luck with your surgery. It is surprising how "doable" it all is in the end.

  • Mine was directly behind the nipple,and quite deep.I live in Sydney,and I had my surgery at Sydney Private.I then had chemo at RPA.But like you,I didn't meet the oncologist until after surgery.During surgery they take tissue samples and send them away for analysis,then when you meet the oncologist after surgery,they have all the results and then they discuss with you,any treatment that you may need.Take one day at a time Jenny.Sending you a big cyber hug.xxxRobyn
  • I live in Petrie, QLD and am having surgery at Redcliffe Hospital.

    I contacted the breast nurse from Breastscreen QLD and she finally called me back and helped asmuch as she could.  she gave me the number of the breast care oncology nurse I have been allocated and she is going to call me back.  I am not afraid of mastectomy, I just want to why more than I have been told.  I don't get to see an oncologist until after the operation.

    Was yours located in the right quadrant,  mine is just probably two inches from aerola and not really deep in the breast.

    Again thank you for your help.  you don't know how much your reply means to me.

     

    Jenny

     

     

  • Jenny,you are doing the right thing,by questioning the surgeons recommendation if you don't feel comfortable.Where do you live? Can you call the hospital and make another appointment with a different oncologist.Can you go to your GP and get a referral?As for the core biopsy finding...I had a core biopsy and was diagnosed with Invasive ductal carcinoma.I was also Her2 neg and oestrogen and prog positive.This was last September.Because of where my cancer was located within the breast,my surgeon suggested a mastectomy and explained to me why.I was very happy with this,and went on to have chemo afterwards.I am really well now.I am sure other ladies will come on here and give you their advice too.Dont be rushed into something though.As my surgeon said,a few weeks isn't going to make a difference.Cheers xoxRobyn