Hi, thank you for your response and sharing your own experience with me. Despite what you have been through reading your message feels positive in terms of treatment and makes me feel hopeful.  In terms of your reconstruction does it look realistic and are you satisfied with how it went?  Over how many surgeries did it take to reconstruct and did you opt for an inplant or your own skin reconstruction and if so which part of the body did you get the skin from? In terms of reducing scarring is there anything you would recommend?  Chemo wise does it make your body feel hot or cold, or do you not really notice any effect? I am prepared that I may lose hair and finger nails.

Hi Rose,

A very warm welcome to our forum.

I am sorry to hear about your diagnosis. I haven't had chemo, so can't help you with that, but I have had a double mastectomy.  I had a lumpectomy, a year prior to having this, but discovered a second cancer in the same breast, less than a year later. I actually found the double mastectomy easier to cope with, than the lumpectomy. Unfortunately, I was not a suitable candidate for reconstruction, due to previous, non-cancer related surgery.

There were two things that I found helpful post-surgery. One was a heart shaped cushion, which I placed under my arms initially. The other was to have day and night wear which opened at the front and didn't have to be lifted over the head. These were also helpful for post-surgical examinations. I have previously stopped breathing under general anaesthetic, due to having a narrow oesophagus and now need fibro-optic intubation, so this was a worry for me, but fortunately all went swimmingly.

It is good to hear that there has been no spread. Do you have a date for the start of chemo yet? Chemo is often the first mode of attack, as this often reduces the size of the tumour before surgery takes place. 

I sincerely hope that your treatment starts soon and that it does what it says on the tin. Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Rose, I had a diep flap reconstruction, where they took tissue and skin  from my stomach for the reconstruction. I am really pleased with my new boob, as it's now smaller and very pert. I will be having a second surgery, to reduce healthy breast to match. I think some people do have both done at the same time  I was told that as my surgery was already 8 hours, they would rather do a second surgery. Could be an age thing, as I'm 62. I will also need to get a nipple tattoo at some point, as that had to be removed also. My breast healed quite quickly after surgery. I have had a slight issue with tummy wound. It goes from hip to hip and most of it has healed nicely. However, one little section  about an inch and a half long, still hasn't healed properly. I'm still having weekly wound check at the hospital. It's gradually getting there, but this section of scar will be a little wider. It may be because I had a previous scar in the same place, from having a hysterectomy  but who knows. 

In preparation for chemo I started walking 2 1/2 miles everyday with hubby. It was great for the mindset and we even managed it on the day after chemo sessions. I also cut all alcohol and made sure I was eating healthily. Plus I did up my water intake, as prior to chemo I didn't drink enough water. I did often have a snooze in the afternoon, due to being more tired. I did bought a lovely soft blanket to snuggle on the sofa, which I still use, now the weather had turned colder. But I was able to do my usual jobs around the house and cook meals. It's early days regarding scarring, but I have bought some bio oil to use. 

I was on EC-T chemo, 3 cycles of EC, then 4 of T (for me this was docetaxel). I did lose my hair, but bought a couple of wigs and lots of lovely hats. I was really worried about nail damage, someone recommended a product called polybalm. I used this throughout chemo and had no problems with nails at all. If you go onto YouTube and look it up, it is very informative. I hope this info has been of some use to you  xx

Hi Jolamine, 

Thank you for sharing your experience and the support, as well as the tips re a cushion and also the clothing.  I start chemo this Monday.(tomorrow) and have to have 6 rounds. 

Hi, 

Thank you for the response it has been useful.  It's not a nice thing to know other people have gone through this because obviously no one would want any one to go through it but it is good to hear that people can get through it all and it makes it seem less daunting if that make sense.  Again thank you for sharing.

Hi Samroz,

I am sure that you are feeling a little nervous about starting chemo on Monday, but hope that it goes well.

Don't forget that we are all here to support and advise you where we can. Please keep in touch and let us know how you get on.

Kind regards,

Jolamine xx

Hi all, in terms of an update I had chemo yesterday it took them a fourth time to get the canula in so I was bit of a human dart board for them but it was not an issue.  Another patient showed me their port but I think I will stick to canula for now, I look away when they try to insert it.  I was in ward with 5 other patients and we sat on some comfy seats, I was there for 7 hours but took a book and also chatted to some of the people. I was well looked after with offers of drinks and snacks.  I didn't have a reaction to the chemo so that is good but was reassured that if I had a reaction that anti-histamines and steroids are what are given to respond to reactions.  I was offered a cold cap for hair preservation but opted not to go for it, I was told it can cause migraines in some people and that it can hurt for a few minutes and it is only 50% chance it will work anyway.  I have been given anti-sickness pills and some steroids which I need to take, and some injections that need to be injected 3 times into my stomach each day.  So far after eating when I got back (admittedly I did have KFC) I had 2 stomach cramps and some diarrohea but all was ok. This morning some tingling in my feet and arm for a few minutes, and a bit of acid reflux but overall I feel good, no sickness, tiredness etc,  Next chemo round 2 out of 6 on the 16th December after bloods are taken to check it is ok to proceed.  

I know you guys have been through all this before but wanted to post an update with as much detail as I can so that any one who hasn't can be reassured that the chemo doesn't seem to be anything to be worried about, although I do appreciate that other people could have side effects and so could I going forward in terms of constant tingling in feet and hands, or effect on the heart/stomach etc as it's early days so far.

I am going to a music gig at a theatre on Saturday so know I have to be alert for temperature changes and go to A and E immediately if there are symptoms if an infection.   I will keep posting updates to this thread as and when just in case anyone else might find them useful or reassuring.

In terms of diagnosis I am also looking into whether I could have been diagnosed earlier because I was experiencing discomfort under the rib area and tingling in my underarm prior to the diagnosis which I don't think was investigated thoroughly, so my advice is to anyone if you know something is wrong and they can't figure it out press for an MRI or CT scan.

Hi Rose, so pleased to hear that your chemo went well yesterday. Be sure to let your team know if the tingling in your hand and feet continues, as they will want to monitor this. I opted for a port, but it wasn't fitted until after my first 2 chemo cycles. I'm really please I had it fitted, as even only having chemo via cannula twice, it did start causing discomfort in my arm, which lasted several weeks. I still get blood tests through my port, when needed. Also, I have zoledronic acid infusions every six months for 3 years, which is also done through the port. I also suffered with diarrhoea at times during chemo, which they gave me medication for. I hope you continue to do well, take care. Xx

Thanks Pippin, I'll see how I get on and keep the port option in mind. For some reason whenever I have bloods taken or needles inserted most medical professionals find it tricky, then occasionally there is someone that gets it first time.  Hope all is continuing to go well your side on your recovery journey, thank you for the support. Rose