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

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 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. 

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

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'm glad to hear that the pain has subsided. Don't hesitate to contact your nurse if you have any further problems. They really are very helpful.

Kind regards,

Jolamine xx