HI Jane,

Avery warm welcome to our forum.

I am sorry to hear of all the symptoms that you've had with your breast. I am not a doctor, but I understand that not all cancers show up with a mammogram or ultrasound and may therefore need additional tests. I had mucinous breast cancer, which didn't show up on mammogram either. I have had 2 bouts of this, 1 year apart. The second time I had a double mastectomy. Unfortunately, due to previous non-cancer related surgery, I was unable to have reconstruction. That was all 14 years ago and I still lead a busy and fulfilled life.

It is good news that you don't appear to have any spread. The decision about reconstruction is always a difficult one. There does seem to be quite a long wait for a delayed one, although waiting times seem to vary throughout the country. Have you been told how long you might have to wait for a plastic surgeon to become available? It would certainly be easier to have everything done in one go. Try to tie your care team down to a specific time scale for immediate reconstruction before making a final decision.

I am not aware of any age related restrictions for Diep. It is probably more important that the skin is healthy to make this a viable option.

Whatever you decide, I hope that you reach the right decision for you. Do you have a date for your mastectomy soon?

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi there , so sorry to hear your diagnosis . Looking on here it seems apparent that a delayed reconstruction is classed as “ cosmetic” ridiculous I know , and therefore ladies have been waiting about two years for surgery . For immediate reconstruction and DIEP they need two surgeons . Having a DIEP requires enough abdominal tissue to make a new breast and age is not a barrier. It’s a big decision for you , but I advise to do a little research first . I wish you well x Let us know how you are doing. 

Hi J

I’ve just gone through this and currently recovering.  I had this in 2019 with radiotherapy, but this time I’ve had a mastectomy with tissue taken from my belly.  None of this showed on a mammogram and they thought it was a cyst that was removed and tested.  I had surgery at a hospital in London which was organised so quickly.  I’m shocked that you will have to wait this long.  Have you asked if you can travel to another hospital as I know there was lady from Bham who was on my ward.

Hi, hope it went ok , I’m waiting for a DIEP any tips? 

Hiya

I'm not sure what tips i can give, bit I'm surprised I'm not in pain, I'm just very tight and uncomfortable under my arm where there nerves are so you do get numbness.

Looking at my breast now I do wonder if I should of had an uplift on the other breast at the same time, but its still very early days and can decide this later I guess.

It my emotions I seem to be struggling with at the moment not what I look like.

I hope this helps and wish you all the best.

Thanks for your reply Jolamine, reassuring that it's not just me who's cancer was missed on mamogram and ultrasound. I'm pleased you are well. The date for surgery is a week tomorrow. I should have thought it through more but when I saw the surgeon I wasn't in a position to take too much time out for a diep but a couple of days after agreeing to the mastectomy and delayed reconstruction, my family circumstances changed and I could have gone ahead. Now everyone's taking holidays and it's more complicated seeing new people and revisiting the decision. 

Hi Higgiash, Thanks for the reply. Again, a mamogram not showing it was BC! Have you just had diep as well as the mastectomy or was it later? I'm happy to travel if needs be but not sure I want to wait long as a few month,s ago I was told it was a single duct ecstasia, nothing to worry about, and now it's widespread. I hope you are recovering well without any pain. I am expecting a BC nurse to phone me today, I'll ask about referral to another hospital. 

Hiya

It's definitely worth asking if you can travel especially if you can be seen quicker.  Is yours hormone related.

I had it all done at the same time, and also had nipple and areola removed, but used skin from stomach to replace this.  I think in a few months time I can have nipple replacement and a tatoo to make it look as normal as possible.  Just waiting on results of tissue and lyphnods to see what happens next.  

Hi Jane,

As you can see from other replies, this does happen. It is impossible to think everything through when you see the surgeon. It takes time for everything that you're told to sink in. There is still time to revisit this decision, if you want to. I agree with LCR. There are a number of ladies on this site, who have been waiting 2 years, or more for delayed reconstruction. Some of these were told that it would be carried out in 9 months to a year. Why not write down any questions you have and have a chat with your breast care nurse initially?

Please let us know how you get on. Remember that we are always here for you.

Kindregards,

Jolamine xx

Hi everyone, thanks for your replies. I am seeing the BC nurse in a couple of days. They approached the surgeons but they can't bring forward any diep surgery and I'm not happy to wait another few months for a new date and risk it spreading. I'll probably go ahead with the simple mastectomy next week and join what seems to be the ever increasing wait for reconstruction. I guess it's still a good plan as long as the wait doesn't go on forever - I don't mind a year, which is what they said originally, but I'm not going to be happy with a two year wait. I think I am still in shock from all the stuff around diagnosis and what would have happened if the second surgeon hadn't taken it further. I had always thought mamograms were supposed to be good at picking up cancers, especially as mine seems to be widespread now.