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

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

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

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

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.

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15 Replies

Hazel_M
Member
12 years ago
My surgeon's name at the Royal is Dr. Clement Wong. Before he specialised in Breast surgery he spent some time doing cosmetic surgery so of course my scar is very neat:) He explained things thoroughly, and when I asked for his help in deciding he was very confident that breast conserving surgery was the way to go for me. He added that his opinion was not based on what would be easier for him as breast conserving surgery was more harder for him to do than a mastectomy. I feel very fortunate to have got him as I am a public patient and when I went to the Breast Care department it was a lucky dip as to which surgeon I got. To be honest, I didn't know that Redcliffe had a breast clinic. I haven't had any experience at Redcliffe Hospital, just visited people there. After your blog I did wonder why you were going to Redcliffe as you are closer to the Royal than me. Whatever you end up doing, just make sure you have all the facts, then you can make an informed decision. Keep in touch and let me know how you are doing, I wish you all the best, take care,

Hazel xx
Liztay82
Member
12 years ago
Sorry to jump in I'm also have treatments at redcliffe hospital :) I never had surgery there though I had mine at caboolture we might run into each other
Sueb
Member
12 years ago
Hi Jenny,

I had my surgery in Brisbane at the Royal Womens Hospital. My surgeon was excelent. His specialty is Breast Cancer. Let me know if you would like his name.

regards

Sue
Jenny_M
Member
12 years ago
Firstly. If this goes to a post - not a guru on site yet - I just want to say I am overwhelmed with gratitude for all the replies. My warmest heartfelt thanks and to all - you are brave amazing people who make this world a better place. Each post has helped me uniquely bless you all Hazel I just wanted to ask how you found your surgeon and have you heard what Redcliffe hospital is like? Thanks heaps Jenny
mgndam1603
Member
12 years ago
Some wonderful stories from the ladies. I hope these help and give yiou food for thought.

Donna
mona63
Member
12 years ago
It is so important to feel confident in your team--well not so important maybe with radiation oncologist but the surgeon and oncologist are key--my surgeon made up her own mind with the different lumps shown on my breast scans--and rejected anything needed to be done on the other one and was very breast conserving in her approach. i didnt have all the scans you mentioned. There is also intersting research coming out of usa that 70% of mascetomies are not needed--

my experience is that i wasnt overly concerned about the surgery at the time but afterwards discovered that surgeon was so through --but also that the incision line is around the nipple so you cant even see the operation line or 'scar'--not a question i would even ask and i just assumed i would have a scar a few inches across; im just wary of surgeons or oncologists who seem to be automatic--or conservative in the worst way--both my specialists really looked at the results and then explained rationale etc

All the best
Mich_x
Member
12 years ago
Hey Jenny

Welcome to a wonderful group on this network that will help you in any way they can I am sure.

I would just say you want to take a step back and find out a lot more information before you have to agree to a mastectomy.

If you find it is the best path for you to go down on this new road you have unfortunately found yourself on then you can say yes to it but you have a right to find out further information first.

I wont chat with you about your diagnosis as I am not qualified in any way.

I do know that I didn't see the oncologists until after surgery but I know a lot of the doctors are doing chemo first before surgery more and more these days.

You need to get all your test results together and get a proper overall picture of it all. Take someone with you and speak to someone who is able to give you the answers that you need to know. Don't be rushed at your appointment or to make a decision. Too many people including myself rush in to things just because they want the dreaded tumour removed but later they say if I had have asked more questions and taken more time I probably would have done it different.

I just want to welcome you and suggest you find out as much info as you can until you feel right about what you have to do.

Good luck with it all huny. We are all here for you. Ask away and if we can help we sure will do so.

Mich xoxoxoxo
TonyaM
Member
12 years ago
Welcome to this network but sorry you've had to join us.It doesn't seem that you've had a thorough explanation as to why you need a mastectomy.At first it is a real shock and a steep learning curve.It often helps to get the surgeon to write everything down for you as it's hard to take it all in.From reading your post,I understand that you have two growths but only one had a core biopsy- is that right?"Not insitu" means the cancer has grown out of the ducts.Hercepton negative is a good thing and so is eostrogen +ve(in the breast cancer world!). Did the surgeon give you a reason why you couldn't have a lumpectomy? Don't let them rush you until you feel properly informed and confident with your decision and the surgeon.I have had both operations and they are similar painwise/recoverywise.Obviously a mastectomy takes more getting used on many levels.Please keep asking questions here and also with your breast care nurse.Have you ordered the "My journey kit"from this network?It's posted out free to you and has lots of information.Sending hugs, Tonya xx
TonyaM
Member
12 years ago
Welcome to this network but sorry you've had to join us.It doesn't seem that you've had a thorough explanation as to why you need a mastectomy.At first it is a real shock and a steep learning curve.It often helps to get the surgeon to write everything down for you as it's hard to take it all in.From reading your post,I understand that you have two growths but only one had a core biopsy- is that right?"Not insitu" means the cancer has grown out of the ducts.Hercepton negative is a good thing and so is eostrogen +ve(in the breast cancer world!). Did the surgeon give you a reason why you couldn't have a lumpectomy? Don't let them rush you until you feel properly informed and confident with your decision and the surgeon.I have had both operations and they are similar painwise/recoverywise.Obviously a mastectomy takes more getting used on many levels.Please keep asking questions here and also with your breast care nurse.Have you ordered the "My journey kit"from this network?It's posted out free to you and has lots of information.Sending hugs, Tonya xx
Hazel_M
Member
12 years ago
I live at Kallangur, quite near to Petrie. I had my surgery at the Royal Brisbane. You are right in wanting to know more, it's your body, it's your life. I had 2 tumours, one was 8m and the other 15mm, I was sure I would have to have a mastectomy but the surgeon said because both tumours were in the same quandrant of the one breast and very close together he would treat them as one. He was very confident that he could do breast conserving surgery which would not leave me lopsided. I am large breasted. He did manage to remove them and get clear margins and with no node involvement and I can hardly notice the missing part of my breast. I was also in the public system and was fortunate to get a very good surgeon who also works at the Wesley Hospital. He was able to give me a choice on what surgery to have, not all women are that fortunate. In the end, I gathered all the facts I was given and decided on a lumpectomy. What surgery you have depends on a lot of things and you need time to digest all the facts. At the Royal Brisbane there were breast care nurses who helped with any questions I had.