Hello Liz

I'm so sorry to hear about all that you've been through particularly since your post-surgery check-up last month. It sounds like it's been a real rollercoaster so I'm not surprised that you feel up, down, sideways, and confused! 

As you say it's great news that nothing else was picked up from the recent CT scan but obviously, there are still questions and concerns that you have. It's unfortunate that you're having to wait a little while to be able to discuss this with the Oncologist but hopefully, when you do see them they will be able to give you some answers and reassurance. 

In the meantime, I wonder if you might find it helpful to talk things through with one of our nurses. It might help to put those thoughts in order ahead of seeing the specialist. If you'd like to chat with them they're available Monday to Friday 9am to 5pm on 0808 800 4040 and I'm sure they will be happy to offer any advice, information, and support they can as well as help you think about questions you might want to ask. 

I'm sorry that you find yourself back on this rollercoaster Liz, particularly at a time when you might have felt that your reconstruction surgery would help close this chapter. Just know that we're here to listen and support you if we can whilst you wait for news and for whatever next steps might be recommended to you. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thank you so much for replying, yes, that's exactly how I was feeling, the diep surgery was an end to a stressful five years. 

I now feel right back at the start with all the uncertainty and worry but then I think everything will be fine, nothing to worry about, move along please! 

Thank you for listening and signposting me to the nurses, I will work up the courage to phone.  It's difficult talking to my husband as he has also been in an awful place after thinking I was handed a death sentence last month and now so much confusion.

thanks again Liz

Hi Liz,

A very warm welcome to our forum.

After finally getting your reconstruction, this unexpected finding must have thrown you for six. I had 2 bouts of breast cancer within a year of one another and I know just how worrying I found it, waiting for the results of my biopsy. I had a lumpectomy first time around, followed by Tamoxifen and experienced all sorts of side-effects. I was diagnosed with stage 1, Pure Mucinous Breast Cancer and assured that it was unlikely to return, as it was one of the less aggressive types. When I had the second bout, I had a double mastectomy and took Letrozole for 6 and a half years.

My positivity was just building up after the first surgery, when I discovered the second cancer in the same breast. As you can imagine, my positivity disappeared overnight and it took quite some time to build it up again, but I did, and I'm sure that you will too. That was all 14 years ago and I still lead a busy and fulfilling life. Did the surgeon go ahead with your reconstruction, despite finding this rogue lymph node? If so, this certainly doesn't sound like a death sentence, but a new chance at life. Much and all as you could have done without this, you were fortunate that it was found at the time. I am delighted to hear that no further cancer was found after your subsequent CT scan.

I am not a doctor, but I expect that your oncology appointment is to discuss the surgeon's findings and the possibility of any recurrence. They may well offer you further treatment as a precautionary measure. There are new treatments coming out all of the time and it is certainly worth listening to what the oncologist has to say, before dismissing the possibility.

I sincerely hope that things go well for you from here on.

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

Kind regards,

Jolamine xx

Hello Jolamine and thank you so much for all your kind words, I really appreciate all that you said and I am truly sorry for all the heartache you've been through.  I'm trying my hardest to be positive and not dwell on negative thoughts, especially through the night.

My plastic surgeon was fantastic and did a fabulous reconstruction and mastopexy which has left me with an actual cleavage and good symmetry, more than I ever expected and fabulous after being lopsided for 5 years. He really is a lovely man and the team at the Hospital are amazing, kind and a supportive team.  It's great he spotted the lymph node and I will be forever grateful to him for removing it there and then. 

I did actually spend the last month thinking this is it, end of the line etc etc. It's the waiting, not knowing and all the awful thoughts in your own head that make this a very hard lonely journey at times. I've gone through so many mixed emotions that I'm really in a strange place and waiting again for the oncologist meeting is making me very fractious.  On an intellectual level I realise this is ridiculous and won't make a difference to the outcome but I can't seem to help having this little devil on my should making me feel that I'm going slightly bonkers.  Physically I've healed well and am really surprised at how quickly I've recovered. I'm very lucky I've been able to take time off from work to heal properly and am/was hoping to return full time next month. 

Can you tell me if Letrozole was easier than Tamoxifen? Quite soon after my mastectomy and taking Tamoxifen I went through the menopause so I assume now, 4 years post menopause, I may be offered L instead of T.  Have you ever considered a reconstruction or are you content with how you feel? My mastectomy scar never bothered me at all, it was always the symmetry that was an annoyance, along with a huge silicone prosthesis that I grew to hate with a passion. 

Did you have the same type of cancer second time around and was it missed the first time? 

Good night, sleep tight, don't let the bedbugs bite

Sleep well, I'm off to browse my Kindle to keep me company through the night

Liz xx

Hi Liz,

I am delighted to hear that you are happy with your mastopexy and actually have a cleavage. I couldn't have reconstruction, due to scar tissue from previous non-cancer related surgery. My lumpectomy left me with a deep groove in my breast, which my second surgeon did his best to tidy up, but I still cannot wear anything low-cut, unless I close the front of my clothing to a certain level to hide this. I found some lovely little gem topped pins, which are often enough to do this. I also have a selection of various inserts that I can attach.

I cope fairly well with a selection of various prostheses for different activities. I used to have large breasts and the silicone prostheses that I have been given, are extremely heavy. Every time I go for a new pair, I am told that they are getting lighter all of the time, but they're still too heavy for my liking. I have taken to using M & S foam breast forms, which come in different sizes and are nice and light. I now use these for every day and only use the silicone ones for dress wear.

I am glad to hear that you have healed well, but fully understand your emotions. Those little gremlins seem to get especially busy in the early hours of the morning. Have you ever attended a "Moving Forward" course? These can be helpful in getting you to a more positive place. It is also helpful to speak to others, who are going through the same unsettling emotions as you are.

I did have the same type of cancer both times. I also had a third scare just 6 moths after my first operation. My consultant thought that it was cancerous too, but a biopsy proved otherwise. However, when I had the third scare, he announced that he was sure that my other breast was pre-cancerous, so we decided on the double mastectomy.

The effects of most of the hormone therapies are similar. I found that Tamoxifen made me feel a lot more depressed about things, but Letrozole played havoc with all of my joints, to the extent that I had to have both knees replaced, during treatment, as well as a number of eye operations (5). The hot flushes, brain fog, lack of concentration, nausea, weight gain, thinning hair, swelling in my arms, joint pain, insomnia, headaches and extreme exhaustion, etc, were there with both medications. However, I would still go through that all again if I had to, as it's given me an extra 14 years.

I see by the time of your post, that you are having trouble with sleep too. I hope that reading your Kindle has relaxed you enough, that you are now in the land of nod.

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

Kind regards,

Jolamine xx

Soooo, that was a long wait for an appointment! Finally saw the oncologist today and had a very sad two hour discussion, I was so certain that due to the time of appointment it was going to be a quick conversation and all was fine.  Turns out it was a very long conversation and now we're going down the ECT route. Three cycles of EC and nine rounds of T.

The amount of information given is huge, walked out with pages and pages of mind boggling reams of paper.  Gave it all a quick skim, preferred to gloss over the side effects as I'll deal with them when I have to, and promptly started making a folder for all the important stuff...

Apparently the MDT are a bit puzzled and can't quite decide if this cancer is a new development or a lurky one from 5 years ago but, and I didn't know this, only a biopsy was taken during my recent DIEP so the cancerous lymph node is still sitting quietly brewing behind my ribs but the oncologist said there may be more.  Bit taken aback by this as I thought it had all been removed in November and nothing showed in my very recent scan, which is a bit worrying too.  I think I must have very thick skin or the cancer is very good at hide and seek.  

The oncologist said sometimes it just comes back. He did explain I'd probably have to take Letrozole after the chemo but we decided we'd talk about that another day.

Anyway, thank you Jolamine for all your kind words and support. I do expect I'll be on here again a ranting and a raving when my chemo starts in a few weeks.  I'm now researching microblading for my eyebrows and hoping I can get it done before treatment.

Take care and thank you again Liz xx

Hi Lizjon,

That has indeed been quite a wait and, by the sound of things, a considerable shock. I am sure that you feel quite upset that the rogue lymph node is still in situ and that you now need chemo. I hope that you find somewhere to carry out the microblading before this starts. Don't worry about the Letrozole, until you see what the chemo does first - it's enough to deal with one thing at a time!

Are you going to try the cold cap?

I'll still be here for the ranting and raving once chemo starts, but I'm so sorry to hear that you have to go through chemo this time.

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

Kind regards,

Jolamine xx

Thank you Jolamine, I've researched microblading and there's not enough time for it unfortunately but never mind, I'm sure I'll cope. I've bought a lovely head covering and a fabulous wig (nothing like my own hair but I thought why not!) as no, I've decided not to cold cap as it's only 50/50 and I'm just going to get my hairdresser to give me a short crop before chemo starts. 

I'm working up to telling my adult children as I've not told them anything about the last two months.  It was very difficult five years ago having the chat, my youngest was only 15 and very angry with me, and I'm dreading it.  They've all been so excited about my reconstruction and could see how it made such a difference to my confidence.  

Tomorrows challenge will be packing a chemo and a hospital bag and then put them away until needed, I do like to be organised for all eventualities. We're very lucky that we're only 5 minutes from our hospital unlike when I had radiotherapy which was an hour and a half away, that was exhausting every day for three weeks.

thank you for all your support, I just want you to know it makes such a difference when someone replies to you and you don't feel so alone at such a difficult time. You really are a star x