Hi, I have had a very interesting journey so far to say the least. I was diagnosed with DCIS in the right breast back in December 2012. Went to have lumpectomy 21 Jan and it was cancelled. Went to have Surgery again on Jan 30th but they couldn't perform the localisation as they couldn't see the DCIS. Cancelled again. They say that the biopsy must have removed too much. I was sent for an MRI. This is where it gets interesting. MRI shows something in the left now. Need an ultra sound and biopsy. Had that done and got results yesterday. Yes it's cancer in the left now. A bit surreal but I must be honest I kind of expected it after the way this journey has gone so far. I believe someone was watching over me. If they had performed the lumpectomy to begin with they would not have found the left cancer. It did not originally show in mammogram and an ultra sound wasn't done on left when they were looking at the right. Now I will have a double mastectomy I just don't know the date yet. It has been a long long journey to get here but I'm glad we are finally moving forward. I'll get new boobs that won't sag anymore that's a bonus. :-)

That is amazing that you are getting recon so quickly in the public system.Can I ask who's doing your diep surgery? I'm not sure where you live but I have started up a support group for the hills area called Kellyville breast buddies and we will be meeting this Friday at Flower power cafe at Glenhaven at 10am.You are more than welcome to come. Tonya xx

The diagnosis has sure dragged out for you.But sometimes things work out for the best and it looks like that for you. There are advantages to having a double mastectomy -you'll get the same size new boobs, no more mammograms, no more worry of cancer returning in your breasts, hopefully avoiding radiation and chemotherapy.In hindsight,I wish I'd had a double cos lopsided is a pain.Anyway,I hope you get a date soon so you can get it over with. Tonya xx

Strange how everything turns out isnt it , your well on the road and you sound like a pretty calm and sensible person? or you may dispute that! Amazing how the bc throws a spanner in the works but I think we all gain something from it. Good luck with all your nexts steps. Regards Adean

I was diagnosed 3 months and still no closer to a surgery date. The Royal brisbane says they haven't received my referral to see dr there and my dr at Radcliffe says he faxed it thru. Don't you think they would just resend the dam thing? Hmmm. Is 3 months too long to be waiting for this? I initially was having a lumpectomy for DCIS in the right. They found invasive in the left and have advised double mastectomy. I would like immediate reconstruction so they are sending me to surgeon at brisbane to assess if that's possible then if he can't I go back to Radcliffe for just mastectomy. He recon can be done I then stay at brisbane. I am getting more and more anxious by the day as I am getting paranoid now that it is spreading. Can someone please let me know how it all works pretty please. Surgeons give you minimal info. Grrrr. Thanks ladies. Xx

Lumpectomy to mastectomy in 60 seconds

15 Replies

TonyaM
Member
13 years ago
When you ring your surgeon tomorrow,maybe ask for a copy of the referral to be posted out to you.Or better still,pick it up. Don't wait for the referral to be put through-just ring the plastic surgeon's office and make the appointment.You should be able to do that.Also tell them to contact you and bring your appointment forward should they get a cancellation cos this happens all the time.Louise is right - take matters into your own hands.Go get em girl!!

Tonya xx
TonyaM
Member
13 years ago
When you ring your surgeon tomorrow,maybe ask for a copy of the referral to be posted out to you.Or better still,pick it up. Don't wait for the referral to be put through-just ring the plastic surgeon's office and make the appointment.You should be able to do that.Also tell them to contact you and bring your appointment forward should they get a cancellation cos this happens all the time.Louise is right - take matters into your own hands.Go get em girl!!

Tonya xx
Marnz
Member
13 years ago
Thanks so much Louise. I'm calling surgeon tomorrow to get it resent. Fingers crossed I can get it moving. Xxx
LouiseTurner
In Memoriam
13 years ago
Hi Marnz, you are really getting the run around. I found that doing my own research for reconstruction was really hard, but in the end was worth it. I agree the doctors don't 'discuss' much. To fill in the gaps I found that the breast care nurse was invaluable. Even without having had surgery you should have access to them. I found really early on that no one was really looking out for me except me. They would have gone and done whatever recon they wanted rather than try to suit me. Sounds harsh but they are busy people and work to a routine. My initial surgery removed the IDC tumours but left high grade DCIS, I think this makes us in a similar situation now in that we are waiting for surgery. One breast surgeon said 3 months wait was fine, the other said 6 months is fine. Pretty scary waiting, but ok I reckon. I was terrified they'd separate the mast from the recon as I'm public, but instead they just put me in for both procedures within 3 months. My point being, that you are in a position that you should be able to push and get just what you want/need. Maybe insist on the referral being resent, or given to you. Take your recon ideas to your appointment, and push politely for what you want. If you don't get the response you need, go to someone else. I found the plastic who did the procedure I wanted and asked for a referral to them. I had an incredibly frustrating and upsetting time, but knew I had to push on to get the result I wanted, coz its my body and I have to live with it. Don't give up...stay strong and on track, jump up and down if you need to. Yes it's hard, but you can do it. You've got to look out for you. Take care, Louie
LouiseTurner
In Memoriam
13 years ago
Hi Marnz, you are really getting the run around. I found that doing my own research for reconstruction was really hard, but in the end was worth it. I agree the doctors don't 'discuss' much. To fill in the gaps I found that the breast care nurse was invaluable. Even without having had surgery you should have access to them. I found really early on that no one was really looking out for me except me. They would have gone and done whatever recon they wanted rather than try to suit me. Sounds harsh but they are busy people and work to a routine. My initial surgery removed the IDC tumours but left high grade DCIS, I think this makes us in a similar situation now in that we are waiting for surgery. One breast surgeon said 3 months wait was fine, the other said 6 months is fine. Pretty scary waiting, but ok I reckon. I was terrified they'd separate the mast from the recon as I'm public, but instead they just put me in for both procedures within 3 months. My point being, that you are in a position that you should be able to push and get just what you want/need. Maybe insist on the referral being resent, or given to you. Take your recon ideas to your appointment, and push politely for what you want. If you don't get the response you need, go to someone else. I found the plastic who did the procedure I wanted and asked for a referral to them. I had an incredibly frustrating and upsetting time, but knew I had to push on to get the result I wanted, coz its my body and I have to live with it. Don't give up...stay strong and on track, jump up and down if you need to. Yes it's hard, but you can do it. You've got to look out for you. Take care, Louie
Marnz
Member
13 years ago
Hi Tonya I still don't have a date for anything at the moment. I'm in limbo. I've been told today to wait til end of week or mid next week to see if its thru by then. Lets not forget Easter is coming so I figure my chances of getting seen are another month away. It's the only thing getting me down. :-(
Marnz
Member
13 years ago
Hi Tonya I still don't have a date for anything at the moment. I'm in limbo. I've been told today to wait til end of week or mid next week to see if its thru by then. Lets not forget Easter is coming so I figure my chances of getting seen are another month away. It's the only thing getting me down. :-(
TonyaM
Member
13 years ago
Big hospitals often misplace referrals.I've learnt the hard way and now I always ask for the referral in my hand and then personally take it to where it needs to go.We are all different but with each time I had breast cancer,I wanted surgery straight away - get cancer out of me! The first time I waited 2 weeks and the second time I waited 3 weeks.I can understand your concern but I guess it's a longer wait if plastic surgeons have to be co ordinated for reconstruction.The plastic surgeon will probably go over your options ie. expanders for an implant later or a diep or tram flap or other.Reconstruction is something you can always do later if you are worried about the operation date dragging out.Is your visit to Brisbane soon?
TonyaM
Member
13 years ago
Big hospitals often misplace referrals.I've learnt the hard way and now I always ask for the referral in my hand and then personally take it to where it needs to go.We are all different but with each time I had breast cancer,I wanted surgery straight away - get cancer out of me! The first time I waited 2 weeks and the second time I waited 3 weeks.I can understand your concern but I guess it's a longer wait if plastic surgeons have to be co ordinated for reconstruction.The plastic surgeon will probably go over your options ie. expanders for an implant later or a diep or tram flap or other.Reconstruction is something you can always do later if you are worried about the operation date dragging out.Is your visit to Brisbane soon?
Marnz
Member
13 years ago
I was diagnosed 3 months and still no closer to a surgery date. The Royal brisbane says they haven't received my referral to see dr there and my dr at Radcliffe says he faxed it thru. Don't you think they would just resend the dam thing? Hmmm. Is 3 months too long to be waiting for this? I initially was having a lumpectomy for DCIS in the right. They found invasive in the left and have advised double mastectomy. I would like immediate reconstruction so they are sending me to surgeon at brisbane to assess if that's possible then if he can't I go back to Radcliffe for just mastectomy. He recon can be done I then stay at brisbane. I am getting more and more anxious by the day as I am getting paranoid now that it is spreading. Can someone please let me know how it all works pretty please. Surgeons give you minimal info. Grrrr. Thanks ladies. Xx