Surgery May 2018

Hi Feenix, oh dear sorry you have more decisions to make.  My Mx no reconstruction was very straightforward and healed so quickly, but you really have to look at all the options out there as it’s definitely not something everyone can live with, I have completely accepted it and am finding losing my hair harder than losing a breast… Something my OH finds very confusing.  I’m sure your team will help provide you with all the answers you need, make that list!!!  Take care Kip

Oh no Feenix! Sorry you’ve had such c***p news. You have my full sympathy/empathy. I have only been given two options with regards to what kind of reconstruction I can have when I have my mastectomy in Jan. Have they said what would be possible in your case? It’s certainly an individual choice. I’m leaning towards going for a double mx with immediate reconstruction using my tummy!! It’s a longer op as it’s more complex and requires a vascular surgeon as well as an onco-plastic surgeon to work together. The recovery is also much longer but im not sure if I can face having implants which will only need replacing in 8 years or so. Using my tummy should last the rest of my life. However, If it doesn’t work there will be no options for me to have further surgery other than to go flat. I’ve accepted that. I think things will be a lot clearer for you once the MDT has fed back what it thinks should be the way forward. In many ways having fewer choices has made making decisions much easier for me. Do take care. Sending hugs and my very best wishes xxx ps Are they considering the Oncotypedx test for you pre further surgery?

Hi Feenix. So sorry to hear your news. Well done for getting your head around it. Go with your gut re recon.

So CDC, our next step today. We visited the chemo unit yesterday to have a look around and baseline tests. I had wanted to restrict my diet as I’m interested in the concept of fasting prior to chemo. However, my daughter had other ideas and did me a birthday brunch and made me a cake. Then we went out last night for a meal! Still feel full this morning so I hope the anti sickness works.

Hugs to all. Xx

Good morning All.
I got back from my trip to my Mums late yesterday and gave just been catching up on all your news.
Feenix - I am so sorry to hear your results. That’s 2 of us now who have had 2 surgeries and need further surgery. My results appointment is today…I am very anxious about it. The travelling yesterday wiped me out a bit so managed to sleep a bit but I am really not looking forward to my appointment. I am going to this appointment alone as have no-one to come with me.
Good luck today ktk and cdc with your appointments - what an appointment nightmare you have had cdc… Hopefully it will all fall into place today.
Glad your results appointment went well mcnullcc. Please do let us know if you experience any se on hormone tablets.
Keep strong everyone. I will let you know how my results appointment today goes xx

Hi all,

Just reading your threads about eating lots the day before chemo, I did the same in case I couldn’t eat afterwards and guess what… I can’t stop eating… blimey I am starving all the time, seems to stave off the sickness when I eat though (especially salty savoury things). 

Feenix - I found Flat Friends before I made my decision to go flat and it was very useful, I also was lucky enough to know somebody who had had a masectomy and remained flat and she was so open, showed me her scars, let me see her prothesis etc and it did help me make up my mind.  Interestingly I did feel that the surgeons etc were completely shocked that I would not want reconstruction and kept reitterating that I would be “flat when I looked down”… as if I hadn’t thought of that!!  Anway, post op and I can honestly say, for me, I have forgotten I only have one, I am very small chested anyway, only A cup beforehand so I think that does help, I’ve found Knitted Knockers" are a brilliant prothesis (free from their website or you can knit your own), very light, soft and comfy and I pop one in and nobody can tell and I forget its there.  Still haven’t got a silicon one from the hospital but not sure I will wear it as ladies say they are heavy??  Whatever you choose will be right for you. I think I was swayed by the shorter op and recovery time… I hate anything that takes a long time… i.e no ice cap!!

CDC - the recon from the tummy is a big op but I read up a lot about that too and women reckon its amazing, you get a free tummy tuck on the NHS … bonus!!

Looking back on all our posts (which actually is only a couple of months) I am amazed how knowledgeable we have become on these things, how we find our way around the NHS system and how strong we can be!  GO US!!!

All going well so far! Well dosed up on anti emetics so hope they do their job! PICC line insertion was fine and there are limitless cups of tea!! Witch regard eating, I think that the steroids make you hungry. Just go with it!! Kx

I’ve finally had a phone call to have my CT scan tomorrow!   Crikey, wasn’t expecting that, at least all will be done before my onco appt next week… dreading results… but fingers crossed!

 

Hi ktk
Glad all going well so far. I saw the Sister earlier who gave me a brief run down of what to expect. She was absolutely lovely and so reassuring. Was then called to my ‘chair’ but told I didn’t need to be there yet as I’m not cold/capping. Sent me back to the waiting room and still here nearly 3 hours later!! A nurse did come to say they are still preparing the chemo drugs at the pharmacy. They are soooooo busy but this is normal!!

How did the appointment go Jazza? Sorry you had to go alone. I’m another bod with two surgeries under my belt but now told I need a mastectomy. Just got to get through the 6 months of chemo first.

Will be interesting to see if anyone has other weird cravings! I’ve had endless cups of tea and biscuits and even a sandwich but still haven’t had any chemo yet!!!

Hi Kip, I never eat McDonalds but have had 2 since on chemo!
Feenix, Sorry to hear your disappointing results. We are at the mercy of the medics aren’t we? I hope it goes well for you from here x

Oh those leaky eyes Feenix, I can’t believe how much I’ve cried in the last few months and it’s never far away, wouldn’t think I’d have anything left to cry but it is better out than in.  

Hi Feenix

Really the flat thing I’m only (just) a B cup but I have to say the surviving boob looks enormous next to the concave other side of me. I can go without anything in certain tops, but in most clothes without my knitted knocker I’d look ridiculous. Only problem is because there’s no weight to it any bras ride up constantly and I have to pull them down every few minutes. It’s difficult. Had I had both sides done I’d probably not bother but one sided I have to. not yet been given a proper prosthetic which may sort the riding up issue because of the weight.

Sally

Good morning all,
I hope you slept well and are ok after appointments /news yesterday.
My news not good… Still not a good enough margin around the pre-cancerous cells. I need more surgery (same op as 2nd one). They do not want to do mastectomy yet, they say my reconstruction after lumpectomy is good and they just need to take another small amount of tissue. So back to the waiting game for me…waiting for op on 6th then another 10 days for results. bcn said she has known some women to go through 5 surgeries before they have got everything.
I am devastated

Jazza … really sorry about your results…It’s bl**dy awful going through that again for the third time… then the waiting for results. I had major meltdown yesterday … just hit me full on… I feel just as bad as before first op. I’m trying to look on the positive side and be logical about the whole process… and remind myself about the cancer I’ve already had removed and minimising the risk of recurrence. It’s just a shame dcis is such a tricky b@#gger. Sending a big gentle hug xx

Jazza - so sorry to hear you are facing more surgery, but the team sound like they are sure this time will be the final one, keep thinking of the nasties that have been removed already.   Big hugs…

 

Feenix -  Knitted Knockers:  I don’t have any problems with my bra riding up, not sure why?  But on their website they did mention that some ladies like to sew a small weight, or bead into it to give it some weight at the bottom and some stitch a small piece of velcro onto their bra and knocker to keep it in place.  I just shove my in the little pocket inside the bra and it seems to be fine, I guess its not for everyone.  The bras I have found best come from George (Asda) on line, very cheap, pretty and very comfy, I got post-surgery sports style bras from their too which did up at the front for immediate wear after surgery and from day 1 I could wear these with my softie prothesis from the hospital.  Also got a lovely post op swimming costume from George too, and you can get Knitted Knockers for swimming which have a waterproof lining (made from those scrunchy shower mits).

 

Love Kip x

 

Jazza,

So gutted for you. You must be so pee’d off. Hopefully the next surgery is the last one!

With the bras it may be me. Because they took away everything, and then shaved the chest muscle too I’m completely concave one side so there’s nothing to stop the bras riding up. I found the Asda post surgery bras unwearable as they are so uncomfortable. They are cut far too high under arm and rub on my scars. The best for me are primark raver backed bralets. Only a fiver too. They still ride up but not as quickly.

Jazza so sorry to hear about more surgery you really don’t need that with everything else you are facing. I will keep everything crossed that they get clear margins this time and you can start next round of treatment.

Good news from me is that ive been given dates for my radiotherapy planning appointment 13th July and hopefully will be starting treatment proper on 30th. Started taking hormone tablets last week only se is that I am feeling really sick bit like morning sickness. How ironic!!.

Love and hugs to everyone x

Mcnlucc glad the hormones are going ok, you must be coming out in sympathy for us chemo ladies with the morning sickness feeling!  

Feenix my mum knits me knockers using the four needle pattern, she said it’s essier but as I don’t know one end o of a knitting needle from another I wouldn’t have a clue!

Feenix meant to say I find the Asda bras slightly on the larger side but still order my usual size and they fit ok.  Haven’t tried anywhere else though to compare?

Thanks ladies.
I am struggling with this news…I know I will be having chemo, radio and hormone therapy and just want to get on with it. This third surgery puts everything back another 4 weeks. Was hoping this all would be over by end of the year. Had to cancel a trip yestetday to Florence I booked last year for July as I won’t be able to go.
Decided to go back to work for a couple of hours today (haven’t been since 2nd op)…the walk and distraction will hopefully do me good and I need to cheer up as out tonight for my Niece Birthday meal.
This is all just a long long nightmare…
Sorry to rant…I know it’s the same frustrating feeling for everyone. I think everyone affected by this should automatically get shares in a tissue company!!! (I cried through 2 boxes yesterday).
Have a good day all xx

Oh Jazza, I can only imagine your frustration, the waiting around for things to happen has to be the worse aspect of all of this, we can deal with side affects and results as long as something is happening.  I think going into work will help a bit, I am working again, all though I work at home, but it really does help to have something else to think about for a while and to feel “normal” again.   Keep you chin up and keep getting through those tissues, let it all out, shout, scream, cry, eat chocolate you’ll get there, you are just taking a little stopover on Shi’s aeroplane journey that’s all!  Take care, Kip xxx