Help please

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

Some wonderful stories from the ladies. I hope these help and give yiou food for thought.

Donna

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

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

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

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

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. 

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.