I have some questions ladies

Hello KTCC

Thank you for your reply and information and my apologies for the late thank you.

After my mastectomy I sort of dropped off the radar of this site.  I just felt like I needed a break from all the breast cancer and boob talk.

I have recovered well and am planning a reconstruction in May.  I actually go back to the plastic surgeon this afternoon for another check up and chat about the next surgery.

I hope by now you are fully recovered from the mastectomy and maybe even reconstruction.

Sending best wishes to you on your continued journey.

Trena

Hi, I know this is a bit late in the day, thought I'd let you know my story in case it helps. I found my lump 07/11, and had FNA's then core biopsy over the next two weeks. The lump grew between each USS. I decided on a double mastectomy - lump was in the left - and to keep my implants, which were there from having had previous lumpectomies and being very lopsided! Up until I got the final path post mastectomy I was told by all USS techs that it looked like fibroadaenoma. Naturally me being me nothing was ever going to be straightforward! The mastectomy 29/11 went well, but on 03/12 I felt unwell - the antibiotics did not agree with my liver. My right drain was taken out on covering doctors (not surgeons) instructions on 01/12. I had a pig tail drain placed 03/12. This blocked. I then produced two massive haematomas one each side and on 06/12 had to have my implants removed. I finally left hospital 10/12, and produced seromas, which have been aspirated once, and need further aspiration as I write. My left nipple has not survived, it's a thick, black scab and I'm waiting for it to fall off. My right nipple is mainly ok - I've just lost the tip. In all this doom and gloom my surgeons have been fabulous and I have been brilliantly looked after - my nurses were all amazing, as were the staff at the Mater Breast Care Clinic at the Private Hospital. My chest looks awful, but I've been assured that it will start to look better soon. I've gone from DD to nothing, and don't regret my decision at all. I'm a size 10, so it doesn't look too bad ass long as I choose my clothes carefully. I don't regret my decision, especially after talking to my GP, who has been an incredible support. I may or may not have reconstruction - implants will be my only option. The lack of credible research concerns me, as does the possibility of a recurrence. I have not been offered any radio as yet, but will not be seeing my surgeon until the new year. I'm currently in Indonisia halfway to the UK to see my family, for a trip planned long long ago - I refused to miss it! Most of the time. I'm feeling ok, but once in a while I'm not. I guess that's normal. I just find the lack of information frustrating. Overall with all I have read I am certain a double mastectomy was the very best chance I could give myself, especially as I had a lot of fibrocystic changes in my right breast. I hope all goes well for you, and send my love.

Hi, I know this is a bit late in the day, thought I'd let you know my story in case it helps. I found my lump 07/11, and had FNA's then core biopsy over the next two weeks. The lump grew between each USS. I decided on a double mastectomy - lump was in the left - and to keep my implants, which were there from having had previous lumpectomies and being very lopsided! Up until I got the final path post mastectomy I was told by all USS techs that it looked like fibroadaenoma. Naturally me being me nothing was ever going to be straightforward! The mastectomy 29/11 went well, but on 03/12 I felt unwell - the antibiotics did not agree with my liver. My right drain was taken out on covering doctors (not surgeons) instructions on 01/12. I had a pig tail drain placed 03/12. This blocked. I then produced two massive haematomas one each side and on 06/12 had to have my implants removed. I finally left hospital 10/12, and produced seromas, which have been aspirated once, and need further aspiration as I write. My left nipple has not survived, it's a thick, black scab and I'm waiting for it to fall off. My right nipple is mainly ok - I've just lost the tip. In all this doom and gloom my surgeons have been fabulous and I have been brilliantly looked after - my nurses were all amazing, as were the staff at the Mater Breast Care Clinic at the Private Hospital. My chest looks awful, but I've been assured that it will start to look better soon. I've gone from DD to nothing, and don't regret my decision at all. I'm a size 10, so it doesn't look too bad ass long as I choose my clothes carefully. I don't regret my decision, especially after talking to my GP, who has been an incredible support. I may or may not have reconstruction - implants will be my only option. The lack of credible research concerns me, as does the possibility of a recurrence. I have not been offered any radio as yet, but will not be seeing my surgeon until the new year. I'm currently in Indonisia halfway to the UK to see my family, for a trip planned long long ago - I refused to miss it! Most of the time. I'm feeling ok, but once in a while I'm not. I guess that's normal. I just find the lack of information frustrating. Overall with all I have read I am certain a double mastectomy was the very best chance I could give myself, especially as I had a lot of fibrocystic changes in my right breast. I hope all goes well for you, and send my love.

Hi Nicole It was great to read your post. Such positive information. It was great you had such a speedie recovery being able to drive after 11 days is amazing. My surgeon is talking about immediate silicone implant reconstruction but I am questioning if radiation is an option as I am terrified of it coming back. I am suppose to meet with the plastic surgeon this week for his opinion on what he can do for me. Lots of decisions to make.... Kind regards Trena

Hi Vicki Thank you for your reply. Your story was very interesting & has made me realise I need to make another appointment with my surgeon for further discussions. He seems to think radiation is not needed but after my own research and reading other ladies stories it sounds like radiation could give me more peace of mind. I am terrified of it returning & of it popping up somewhere else as secondary cancer. I think I will eventually opt for an implant reconstruction, I don't think I could cope with more wounds & skin grafts after the mastectomy. Thanks again Vicki. Kind regards Trena

Hi Vicki Thank you for your reply. Your story was very interesting & has made me realise I need to make another appointment with my surgeon for further discussions. He seems to think radiation is not needed but after my own research and reading other ladies stories it sounds like radiation could give me more peace of mind. I am terrified of it returning & of it popping up somewhere else as secondary cancer. I think I will eventually opt for an implant reconstruction, I don't think I could cope with more wounds & skin grafts after the mastectomy. Thanks again Vicki. Kind regards Trena

Hi Trena, I have added you to the phyllodes tumor group. You can read through lots of blogs there and contact the various members through this group. I have also got a blog on the site that has my complete experience on there which includes mastectomy and reconstruction with an implant, plus a reduction of the other breast. The blog is titled "phyllodes tumor - is there anyone else out there?". This blog also has the stories of some of the other ladies in the group too. Please ask questions on my blog or within the group, as we are happy to help you as much as we can. Also please post your story if and when you feel ready. Best wishes. Katie.

Hi Trena, I don't have this diagnosis but am aware of a online support group for this type. See the link below. http://www.bcna.org.au/group/11746 Also, for you questions about reconstruction you are welcome to join the breast reconstruction group, link below. Plenty of info in this group dealing with your questions. http://www.bcna.org.au/group/61026 These groups are private, so just make a membership request, Cheers Louie

Hi Trena, I don't have this diagnosis but am aware of a online support group for this type. See the link below. http://www.bcna.org.au/group/11746 Also, for you questions about reconstruction you are welcome to join the breast reconstruction group, link below. Plenty of info in this group dealing with your questions. http://www.bcna.org.au/group/61026 These groups are private, so just make a membership request, Cheers Louie