Hi Jane

I hope you are well and recovering from your surgery. I found your post so similar to how I am feeling.

I've just joined as I have been diagnosed with invasive ductal cancer. Like you and others, the cancer was missed when I first saw a consultant in September 2022 and I was told the lump was prominent tissue. After speaking to my GP I was referred again in October 2023 and the 1st biopsy was clear. A 2nd biopsy and MRI,CT scans showed a malignant tumor 6 x 4 x 2cm, which at 38C is most of my bust and the cancer is also tethered to my skin. The scans show that the cancer is currently contained in the bust but as spread outside of the ducts. No cancer is showing in lymph nodes at the present time.

I have now been referred for a mastectomy and maybe immediate diep reconstruction.  I am awaiting results from onco type dx test before a final treatment plan is made. Although I would prefer an immediate reconstruction, like yourself I am concerned about waiting times and cancer spreading. I have not been given a timescale as yet, but everything is going round and round in my head. 

Any advice would be appreciated, thank you xx

Hi there Smor, Sorry to hear that you have been through the mill with this and had such a problem getting to a diagnosis. Not surprised you feel like it's going round and round in your head, I felt a lot like that as well. It's partly the shock I think, knowing you were right all along and it was missed. I'm not sure what advice I have but I can say that after a few weeks the only real issue I've got now is an itchy back due to wearing a bra, which I didn't before the mastectomy (36B) and now need to wear to hold the prosthetic boob. Now I've got hold of a nice prosthesis you can't really tell it's not real in most clothes although I've not risked a swimming costume yet. My area currently has waits of about 18 months to do a delayed deip reconstruction and I've already had a scan to check the blood supply to the area they'll take tissue from. Because my dcis cancer was still confined to the ducts, I was told the increased 'risk' from waiting wasn't serious if I opted to queue for immediate reconstruction but a number of other things affected my decision, including a current family situation (needed to be able to drive and provide care for someone in the short term) otherwise I'd possibly have opted to have it all done at the same time, but then again, not if the wait was more that a few weeks, and I know my anxiety would have gone through the roof. At the time I wasn't sure if I'd regret wanting to get on with the surgery quickly but after all the faffing around getting to the diagnosis I was actually very relieved to hear that I could avoid both chemo and radiotherapy and the immediate mastectomy without reconstruction would be considered 'curative'. I knew I didn't want a synthetic implant, which would have been quicker and easier, I wanted something permanent that didn't need replacing in 10 years time. Now I'm still going to have to decide if I want a second surgery for deip in a year or so when the time comes, or if I am happy to live with the current situation permanently. I guess it'll be an equally complex decision for you as well. It's not easy, it's probably based on the various risks involved, one surgery or two, length of wait when you are worried about it spreading, how you feel about your body image... Anyway, after a few weeks it's settled down and causes no problems apart from having to wear a bra when the elastic makes me itchy. Good luck with whatever you decide, and hope it goes well. Big hug, Jane

Hi there Smor, Sorry to hear that you have been through the mill with this and had such a problem getting to a diagnosis. Not surprised you feel like it's going round and round in your head, I felt a lot like that as well. It's partly the shock I think, knowing you were right all along and it was missed. I'm not sure what advice I have but I can say that after a few weeks the only real issue I've got now is an itchy back due to wearing a bra, which I didn't before the mastectomy (36B) and now need to wear to hold the prosthetic boob. Now I've got hold of a nice prosthesis you can't really tell it's not real in most clothes although I've not risked a swimming costume yet. My area currently has waits of about 18 months to do a delayed deip reconstruction and I've already had a scan to check the blood supply to the area they'll take tissue from. Because my dcis cancer was still confined to the ducts, I was told the increased 'risk' from waiting wasn't serious if I opted to queue for immediate reconstruction but a number of other things affected my decision, including a current family situation (needed to be able to drive and provide care for someone in the short term) otherwise I'd possibly have opted to have it all done at the same time, but then again, not if the wait was more that a few weeks, and I know my anxiety would have gone through the roof. At the time I wasn't sure if I'd regret wanting to get on with the surgery quickly but after all the faffing around getting to the diagnosis I was actually very relieved to hear that I could avoid both chemo and radiotherapy and the immediate mastectomy without reconstruction would be considered 'curative'. I knew I didn't want a synthetic implant, which would have been quicker and easier, I wanted something permanent that didn't need replacing in 10 years time. Now I'm still going to have to decide if I want a second surgery for deip in a year or so when the time comes, or if I am happy to live with the current situation permanently. I guess it'll be an equally complex decision for you as well. It's not easy, it's probably based on the various risks involved, one surgery or two, length of wait when you are worried about it spreading, how you feel about your body image... Anyway, after a few weeks it's settled down and causes no problems apart from having to wear a bra when the elastic makes me itchy. Good luck with whatever you decide, and hope it goes well. Big hug, Jane

Thank you so much Jane for taking the time to reply. I am so pleased that you avoided chemo and radiotherapy and that you did not regret your decision.  I suppose I will just have to wait and see what treatment plan they recommend and take into account surgery waiting time. Just wish I had a crystal ball to help me decide. The pressure to make the right decision seems immense at the moment. Take care xx