Jane 

thats awful that it wasn’t picked up , good luck for your surgery I’m one year on I had lumpectomy ,had my first annual check a few weeks ago I also feel that a one year check being a mammogram is not sufficient it’s absolutely ridiculous just annual for 5 years and like you said yours wasn’t picked up in this way xx 

love Lara xx 

Well, as it was so widespread, 6cm, I had a mastectomy almost 3 weeks ago. Now it's come back as only 3 cm so I'm not sure where the rest of it went! Too late to do anything about that now. Although I have no mobility issues and felt fine for the first week after the surgery but I have now developed nerve pain. I feel like I've been scalded, I can't bare the touch of clothing, I can't wear the prothesis, and it's getting worse every day. I can sleep reasonably well but I'm exhausted by the afternoon. None of the medication touches it, is there anything I can do to reduce the pain? Does this eventually go away?

Hi Jane,

I'm glad to hear that you have now had your mastectomy, but sorry to hear about the nerve pain. I had a lumpectomy with my first bout and a double mastectomy with the second. I had a lot more nerve pain after the lumpectomy than I did after the mastectomies. There are an assortment of pain medications, but the stronger they are, the more tired they are likely to make you feel. I live in a street with speed humps and I found it agony to traverse these.

Are you sure that this is nerve pain - do you notice any swelling or heat in the area? I developed seroma after my second surgery and this was very painful. They don't like to aspirate these usually, because they often build up again. In my case, because there was so much swelling, they did this 3 times. Each time, I had great relief immediately after it was done and it became sorer, as the fluid built up again. It did disperse after a few weeks. Have you spoken to your nurse or seen her about this - if not, it might be worth doing so.

I hope that it all settles for you soon.

Kind regards,

Jolamine xx

Thanks for the reply Jolamine, good to hear yours dispersed eventually. Not sure if it's a seroma or not, seems to be from an area where there's no fluid or swelling but hard to tell. I'll be contacting them again after the BH weekend. I keep hoping it's going to improve but it stays the same, gruesome, hope it is a seroma which will resolve but worried it might be nerve pain. 

Hi Jane,

Have a word with your nurse after the weekend. Here's hoping that she can do something to hep you.

Kind regards,

Jolamine xx

Thanks Jolamine . I took note of what you said before and waited a few more days before bothering the nurse and it very suddenly started to subside. More or less pain free now! Must have been the seroma. X

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

I’m so sorry to read your posts . Please be aware that if you go for a delayed DIEP it’s about a two year wait , depending on where you live . They have not caught up yet after Covid so have a backlog , and ladies who have an immediate DIEP take priority . Age is not a barrier but general fitness is , as well as enough tummy to make a new breast . 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