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have had to make a difficult decision and really struggling with it any1 else at the same stage as me

26 REPLIES 26

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Thanks Karen, My you have through the mill. I will hopefully get results on the 13th when I start my chemo I think I might my onco doc then.
Take care
Deedee xx
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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Deedee,

I had a mastectomy with imediate recon on the 14th May; the initial SLN was negative however with the pathology back it showed that the tumour and surrounding pre cancer cells measured 4.8 and was a Grade 3 (previously had been Grade 2) which was much larger than the mamogramm, ultrasound and MRi so sometimes they just don't know until they get in there what they are dealing with. Also on the pathology it showed that I had an inframammory node with cancer which was removed with the breast but also the SLN had a micro on it of 0.4mm which is tiny and they advised that I had two options.
1 to leave it and potentially nothing might happen with it or the radio therapy/chemo would get it or have a lymph node clearance. I had to say for me personally there was no choice and I opted for the clearance of level I and II and that was on the 24th May 2013. The took out 14 nodes and all 14 were clear so some might say that I had the op for no reason but for me I will never feel that way but can understand others who do. I had my CT scan last Saturday and I am off to have my bone scan this morning but I have to say prior to knowing that all 14 nodes were clear I was terrified about both of these scans and really my BCN says they are precautionary. Time will tell I guess.
I had a skin saving mastectomy so I was able to just get an inplant put in that will stay there and due to the extra op of the clearance tomorrow is my first "fill up". The swelling and pain has probably all gone (the arm is sore so it's hard to distinguish sometimes where the pain radiates from) but I can now feel the implant and it feels weird. It is soft as I can touch it but it feels hard almost like it is clamped to my skin; I am sure I shall get used to it but I am aprehensive of the fill up. I chose this implant to stay rather than the expander also because I didn't want another operation. I know it is hard to make these decision, I have found that, combined with the waiting is the most unbearable out of all of this so far.
Try not to worry too much about the CT and Bone scan although I can totally empathise with you when the fear creeps up!

Take care
Karen
x

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi everyone,
Thanks for your comments it really helps.
Got my oncologist appointment tomorrow then will see BCN.
Thurs my CT scan.
5th July, appoint to see another Doctor for breast recons, must be to discuss the operation although at this point I will be going through chemo at this point.
Take care everyone
Deedee xxx
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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Ooooops! Posted twice in error!
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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi DeeDee,
I was initially diagnosed in 2009 with a 5cm lump in my right breast. I opted for a mastectomy with immediate reconstruction as I personally couldn't bear the thought of waking up without seeing my own skin and a boob of sorts. I had the lat flap ( where they use the muscle from your back) and a silicone implant as I am ample chested and they needed to balance me up! It was a 6 hour operation but in my mind it was worth it. I still have to wear a partial prosthesis as they couldn't get my right side quite large enough. They were going to reduce my left breast at a later date but in 2011 I was diagnosed with secondaries so that's on hold. I also had radiotherapy on the right side after my reconstruction and this had been fine. My back and shoulder sometimes feels stiff and tight but I do a few stretches and it loosens up. I've also been lucky not to get lymphodema, which is something to be aware of.
Its a really tough decision, and your body will never be the same again, but all the scars are battle scars, hard earned, and a testimony to your strength at tackling this horrible disease. Please try to stay positive and focused, all the scans and tests are frightening first time round, but they get easier and become a part of your life, much as you don't want them to. Think of them as safety nets, to monitor and reassure.
Lots of love x x

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Dee dee,
In some ways it's good to have chemofirst. You'll be able to fully research your options for mx and any reconstruction.

All the best honey x

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Every1,
Still haven't moved on much. Got a letter for my CT scan on the 30th not seen Doctor to discuss anything or oncologist. Not quick enough for me. Going to phone BCN today to speak to her

Deedee xx
GMT
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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

I know this may not be relevant now but just wanted to say expanders can be temporary just to stretch the skin. The type I had was never meant to be a permanent solution thank goodness as it is very hard and can be uncomfortable. I had three top ups of saline which is put in through a port in the expander, located by a magnet. Originally I was to have the expander out and an implant put in. But as I had radiotherapy ps now says have to use a flap of skin, so I've opted for a tram flap which will make a new breast from my own tissue.
On the MRI front, they can be claustrophobic but I too found singing to myself helped. I've had 2 not bc related. i know some people do take a mild sedative sometimes. You could ask your gp if you think it will be a problem.
Take care
xxx

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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Melrose Thank you for that info it has helped a lot if I have to have one I will do what you said and hum ha ha
much love
Hilary xxx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Deedee

Emma has started a thread for the June chemo peeps - We are all pending our dates (except for Emma), but we all think that June will be our time.

Please come over an join us.

Take care
Martha xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi DeeDee
The MRI scan is just of your boobs. They use a contrast dye that highlights areas off concern so that when they operate they know exactly what is there and what to take away. The ct scan is of your vital organs to check the cancer hasnt spread. The ct and bone scan are routine so try not to read to much into them. Xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Martha,

I will let you know soon xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Deedee

let me know your date for starting chemo as we might be together. I'm hopefully getting my date on the 22nd.

Take care
Martha xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi, I got a phonecall from the BCN today she is having a meeting tomorrow with the doctors but it looks like I will be starting chemo 1st rather than have my mastectomy 1st not sure why hopefully find out tomorrow. Melrose still not had my date for CT scan yet but I may ask about MRI scan what is the difference ?xx
Deedee xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Hilary. I did have to take some Bach rescue remedy drops to prepare myself, a great thing to have in your bag btw. It was strange but I just imagined myself elsewhere and tried to hum songs in my head to the rythum of the noises the machine made!
It was about 20 mins and I managed to relax towards the end. My husband was in the room which was reassuring. For me it was worth it to know my good boob was clear and for the breast surgeon to know exactly what he was dealing with. Which was 5 tumours, only three showed on ultrasound and two nodes, although I had all removed.
Hope that helps xx
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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Melrose What did you think of the MRI scan was it very claustrophobic were you glad to get out of it and how long did it take
Hiilary xxx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Morning DeeDee.
Sorry you find yourself in this situation. I had a mx and full node clearance last month and will have chemo and rads. I was told I couldn't have an immediate reconstruction because the rads effect the elasticity of the skin and remaining tissue.
At the time of my diagnosis I asked for an MRI scan. This gave a clearer picture of what was there as well as checking my 'good' boob was clear. If you call your BCN you can ask if this us available to you too. I also had a bone and ct scan. Waiting for results is awful our imaginations run riot! But worth it to know exactly what we're up against.
Good luck and best wishes to you
Emma xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Thank you every1 for your comments, my head is all over the place at moment. I've to go and speak to my doctor this week to discuss operation and also i am getting a CT scan done as well. I also have a marina coil in, my doctor has said I need to get this out as it is producing hormones and making the cancer grow quick. So as you can imagine I am all over the place and can't sleep. Thanks every1 again this site really does help.

Deedee xxx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Deedee a tissue expander is put under your muscle and is like an implant but pumped up gradually to whatever size you want to be. Most of them are permanent now but can be replaced with implants at a later date
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Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Deedee,

I was dx in September 2011 and advised a mx but decided to refuse reconstruction and I am so glad I did now. At the time I did not know anything about options and it is difficult to make a decision you have to live with for the rest of your life when your head is all over the place.

When I went for my check-up with BS last month she suggested speaking to plastic surgeon who was in the clinic that day. The upshot is now having delayed reconstruction about Oct/Nov. Reason for delay is I had Herceptin and only finished in December so need a break from hospitals for a while.

Trust your instincts and find out all the info you can before you make a decision. Good luck.

Take care, Liz.

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Deedee, at risk of confusing you further by adding options - have you had a CT scan yet to check if there are any secondary tumours?

I too have grade 3 agressive bc, diagnosed Nov in a tumour 3.8cm. Was told mastectomy necessary until we discovered secondaries in the liver & lungs - then I progressed straight to chemo + herceptin. Obviously not good to have the secondaries, but it meant there was no point removing the breast and putting me through unecessary surgery. Now 5 months later, the secondaries have almost disappeared, the breast lump is <1cm and WLE is being suggested to "debulk" the tumor that's left.

My point is, the mastectomy or further tissue + lymph removal is all in a bid to stop it spreading and is likely to be followed by chemo anyway. So, if it had already spread (I sincerely hope it hasn't), it may not be beneficial to put yourself through surgery. Hence worth asking for a CT scan of the body if you haven't had one.

Good luck, you're in good company on this site.
Sarah

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi DeeDee,
I had initial surgery and the a mastectomy and nodes removed and also a reduction on my good side. That was about a 4 hour op. I had delayed reconstruction and had a prosthesis. I hada initial reconstruction 18 months later. There are many reconstruction options and you'll need to discuss these with your surgeon. Tissue expanders are quite a good idea as they are temporarypans you can at a later date have them replaced with your own tissue or implants.
It's a really big decision and so many things to consider. I wasn't happy wearing a prosthesis and couldn't wait for my reconstruction. Everyone is different and immediate recon wasn't recommended for me. Whether you'll be having radiotherapy will also need to be considered.
Good luck with your decision xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Deedee

I had my mx on December 12 2012, as you say, it is a long operation to have reconstruction. So I didn't have it because I have a lung disease and was advised against such a lengthy procedure. I have a prosthesis which I wear inside my bra when I go out. But at home, I don't usually bother. I was given the prosthesis by the prosthetics nurse at my Breast Clinic. She gave me a couple to try there and then (after scar had healed) . Good luck, whatever decision you make.

Poemsgalore xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Wendy, thanks for your comment, How are you after your op? sorry what does that mean then expander implants is that like silicone implants rather than having your own tissue from your stomache or back. And yes i have had lots of surgery when i was younger up to 7 years ago and just can't bear the thought of going back again for more surgery I know i have to.
Deedee xx

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Deedee I know it is really hard but having had BC twice I was adamant I wanted double Mx . I then found I had BRCA1 gene so it was a no brainer as to what surgery to have. I had surgery 2 weeks ago and had immediate recon with expander implants as like you I have had lots of surgery in my lifetime and did not want invasive surgery this time as felf I had had enough.

if you want to know more about my surgery please just ask about anything however small you might think your question is. I am here for you.

Wendy x x

Re: have had to make a difficult decision and really struggling with it any1 else at the same stage as me

Hi Deedee

In addition to the support here, please feel free to call our helpline on 0808 800 6000, our team are here to offer you further support and a listening ear during the week 9-5 and Saturday 10-2

Take care

Lucy

have had to make a difficult decision and really struggling with it any1 else at the same stage as me

I got my results last thursday the 16th. Got a WLE and SNB done on the 3rd of may. Results wasn't good was told it was an aggressive cancer grade 3 it has spread to my lymph nodes and more on my breast. Doctor said to go back in for more tissue away and two thirds lymph nodes. After speaking to my family I decided on going for full mastectomy as i couldn't bare the thought of waiting again for 2 weeks for more results and could be told the same thing. The only thing is, is the decision of whether I go for reconstruction as it is a 6hr operation has any1 not went for reconstruction and opted for prothesis.

Confused.com
Deedee xx