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Feeling gutted and wobbly

6 REPLIES 6
Maximiliana
Member

Re: Feeling gutted and wobbly

Flyingarcher, I'm right with you.

 

I'm waiting for my Oncotype score as well. I really really hope my score is low. It's frustrating not being able to plan my life with confidence until I receive my score info.Smiley Frustrated

Lizzie
Member

Re: Feeling gutted and wobbly

Hi Flying archer,

I'm really sorry that you are back in the limbo of waiting....and waiting again.  As Anniej said it is positive that they are being so thorough and you will end up with the best treatment plan for you.

I got results last Thursday that they had good margins and no spread to my lymph nodes.  They didn't have the results re whether it was oestrogen or progesterone +'ve .  I have,another appointment next week and have been told unofficially it is likely to be rads and hormone treatment for me so that is what I am banking on.

Take care and sending a big hug xo

Anniej
Community Champion

Re: Feeling gutted and wobbly

So go ahead, Flyingarcher, have that tantrum, you're  entitled to. The waiting game is awful, but at least everything is being done to ensure that you have the best outcomes. I'd hate to think you needed further procedures down the line. 😱 Best have your tantrum here and let them sort the treatment out . Big big hugs and best wishes for a speedy and happy resolution. X

Mumoftwo
Member

Re: Feeling gutted and wobbly

Hi Flyingarcher, I was in exactly the same position as you last year. At diagnosis I was told that I would be having a lumpectomy and rads and that chemo would be given if cancer was found in my lymph nodes but that it was very unlikely. After surgery my surgeon told me that my nodes were clear which was a huge relief but when I asked her if that definately meant no chemo she said that she couldn't say until the results of an Oncotype test. I was gutted and wish I had been told from the beginning that chemo was quite likely as it felt like my hopes had been raised and then quashed. As it happened my Oncotype score came back as 28 which is the higher end of intermediate but strangely as er/pr negative which renders the test useless. My hormone status was rechecked at my hospital and was definately strongly positive so I guess the Oncotype score would not have been accurate. I did not have chemo as it was felt that any benefit would be outweighed by the risks.  Whilst waiting for the results I had my long hair cut to shoulder length, bought silk pillow cases, stocked up on mild shampoo and did a lot of research on coldcapping as I was so sure that I would be having chemo and that wait was the worst part everything that happened. I know it's easy to say but try to stay positive as your results may be ok and treatment may be surgery and rads and no chemo.  Take care,  Michelle xx

SandraSussex
Member

Re: Feeling gutted and wobbly

Hi Flyingarcher,

I know it took me back to diagnosis when a doubt was put on my treatment plan! I cried like a baby and said I couldn't do it anymore!

I am still no clearer to knowing...I am having my hair done next week if I have to lose it down the line will have to cross that bridge!

I am terrified of chemo I tend to get every side effect going with medication....on my own with my 14 year old daughter as well! I don't want her to be frightened or nurse me either!

I am really sorry you have been put back to waiting. I was celebrating with you last week!

Sandra x
ann-m
Community Champion

Re: Feeling gutted and wobbly

It's perfectly ok to throw your toys out of the pram, flyingarcher!

Waiting on results is so stressful & you thought your treatment plan was confirmed only to get a some more uncertainty. 

But, as you say, it's best to get things properly sorted out now so that the treatment plan is as right as it can be. 

Take care

ann x

Flyingarcher
Member

Feeling gutted and wobbly

Having had the woo hoo on Thursday of all the cancer cleared HER2 negative so no chemo, geared up for rads, just been phoned by bc nurse.  They are sending Mr C to California for Oncotype dx testing so I might still have to have chemo.

 

I know it is really good that they are investigating everything and having read the info about it on here I can understand why they've done this but I've had since Thursday to think about another treatment plan.  Been really up beat to friends.  Shouted woo hoo from the roof tops and, paid lots to have hair done today.  Feel so deflated and upset.  Also worrying about what else hasn't been disclosed or is still needing testing.  The bc nurse said there was another test being done on the cancer.  I don't know how much more of this rollercoaster I can take.  It's been simple lump, rads the HER2 possible then maybe chemo back to all clear snd rads plus pills.  Now all thrown up in the air with everything and ages to wait.  

 

Just want to have a really big toddler tantrum.