Recently diagnosed and feeling so very scared and alone

[JD-W]

Hi Daisy,

Just thought I’d check in and see how you were doing?

Hope all is well x

[daisydi]

yep still feeling fine but Im hoping there wont  be a big dip soon ...

[JD-W]

So pleased to hear you are ok Daisy...you seem to be doing really well and sound so positive..well done you 😊 xx

[daisydi]

Hiya I feel ok thank you.  At least one is done.  Have had numerous anti sickness meds and I think that really is the trick and have been drinking lots of water.  Hope I'm not being lured into a false sense of security.  I am a bit frightened to go to bed as I live alone but just have one more tablet at bed time and hopefully will go to sleep with no probs.  Fingers crossed.  Hope you are ok xx

[JD-W]

Hi Daisy,

Just wondered how you got on today with your first chemo...been thinking about you and hope you ok x

[JD-W]

Hi Daisy,

Thats wonderful news and made my day so you must be over the moon 😊

I’m ok thankyou...my skin broke on my last rads session so given some special cream for that...very sore 😱

Had my 2nd Zoladex injection on Monday and started Letrozole last night...woke up this morning feeling like I’d partied hard 🥴

so pleased for your results Daisy - well done and be lovely to keep in touch whilst you going through your treatment x

[daisydi]

Hi Julie CT results were clear so I will start chemotherapy in about 2 weeks and radiotherapy around August.  That will take me up to a year since diagnosis.  How are you getting on?

[JD-W]

Hi Daisy,

Good to hear from you and glad you’ve got the CT Scan done. As we know the next part (waiting for the results) is a struggle but I’m keeping my fingers crossed for you...I know my surgeon and BCN told me that they very rarely see bad results following lymph node involvement so try and keep as positive as possible.

Ive just comleted #10 of 15 sessions and really feeling it now. I saw my Onc in the week who told me I was doing ok but have developed slight lymphodema in my breast 😱 He brushed it off and told me to keep massaging in the cream and if that didn’t work he’d refer me to the clinic 🤦🏼‍♀️ The Rads also seem to have set back the progress I’d made in my arm too so worrying about that now too.

Im seeing him again on Tues for another update and to start the Letrozole and bone tablets and arrange my 2nd Zoladex injection.

Sending you lots of good luck Daisy for your results 👍🏻

Keep in touch

Julie x

[daisydi]

Hi Julie, this is my 3rd reply as they do not seem to post.  Im ok ish just had CT but now of course worrying about results and what the future holds.  You must be nearly finished now.  This has been such a long journey for me and just need to get treatment started.  Hope you are ok x

[JD-W]

Hi Daisy,

just wondering how you were and how you got on today.

Julie x

[JD-W]

Hi Daisy,
I can relate to you saying you are finding it hard to accept it’s happening to you...I am exactly the same and really struggling mentally to ‘accept’ this rollercoaster I joined back in October.
I know we need to keep positive but unlike the ‘old me’ I find that very hard these days.
I’m so happy for you though that you did eventually get to keep your boob.
Keep in touch
Julie xx

[daisydi]

Hi Julie, not sure about anything yet. Got to have CT scan and nuclear medicine bone scan to check for spread and then see oncologist.  Cant see chemo beginning before March.  I am finding it really hard to accept that this is happening to me but it is and I just have to deal with it.  I was so hoping to avoid chemo but then I didnt want to lose my breast either so I suppose 1 out of 2 is a positive...?

[JD-W]

Hi Daisy,
Great news that you can keep your boob..you made the right decision to go for a 3rd attempt 👍🏻
I know you’ll be disappointed about having chemo..it’s another hurdle for you.
Do you have a date that your treatment starts?
What’s your hormone treatment? Have they discussed that with you?
Julie xx

[daisydi]

Julie my third op was successful so can keep my boob but another 3 nodes pos so thats 4 out of 24 they removed so will be going on to have chemo/rt and hormone so basically the lot.  Happy days!

[daisydi]

Thanks Julie.  I am seriously in meltdown again!  Praying for good news but fear it wont be.  Hope you are coping well with your r/t.  Will let you know xx

[JD-W]

Hi Daisy,
Just wanted to wish you good luck for your results tomorrow.
Will be thinking about you.
Julie x

[Mai7]

Well done daisydi, take it easy. xx

[JD-W]

It sounds like you are doing really well Daisy...well done you xx

[daisydi]

my arm feels a bit heavy and sore not nerve pain though. Boob is sore, drain is draining. waiting for district nurse.  Oh the joys ....

[JD-W]

Hi Daisy,
Great to hear from you 😊
Well done you 👍🏻
How does your arm feel? X

[daisydi]

I'm done and home. Just another waiting game now. Thank you for thinking of me.x

[JD-W]

You will be scared as I was...I know how you are feeling...but we have to keep positive 🙏🏻
This forum keeps me positive hearing how inspirational everyone is and there are so many good news stories 😊
I’ll be thinking about you tomorrow x

[daisydi]

Thanks Julie feel like a been waiting a very long time for this op.  I am super super scared.  Have to ring hospital at 5am to see if there is a bed!  I am praying for a good result x

[JD-W]

Hi Daisy,
Just wanted to wish you good luck for tomorrow.

Julie x

[Jobey68]

Carol Lina, its normal to have pain and numbness after lymph node surgery, it takes a while to settle down and all the nerves to come back to life and mine is still a little numb nearly 4 years on.

Of course if it's worrying you speak to your clinic to get checked out but it's very early days for you and I remember my node incision was far more painful than my lumpectomy one. Xx 

[Carol Lina]

Thanks, Daisy. I hope you don't feel so numb and painful as I am. It's making me nervous 😥

[JD-W]

Hi Daisy,

So glad youve got your next date and sending you lots of good luck.

Julie x

[daisydi]

Hi Carol Lina, I didnt have pain and numbness from the biopsy because the surgeon removed the sentinel nodes through the incision in my breast as I had a mammoplasty.  When I spoke to my surgeon on Wednesday about the axillary clearance I am having on 10th Jan he told me to expect pain and numbness as they have to cut a nerve to get to all the nodes.  They also said it was very important to do the exercises and if there was any swelling on the arm to get it seen to as quickly as possible.  So I expect what you are feeling is normal.  

[Carol Lina]

Daisy, I wish you all the best. Fingers crossed for you! 😃🤞

Can I ask if you felt numbness and pain in your arm and armpit after lymph node biopsy? I'm around ten days after surgery and still feeling so much pain and numb (not on the cut, but on the surrounding area). I don't know if it's normal 😥

Wish you a good weekend and Merry Christmas. Hope you can "forget" about it for a while and have the fun you deserve after having a so hard time.

Carol xx

[daisydi]

Date for my next op is 10th January.  I am hoping for third time lucky.  x

[daisydi]

Hi Julie I spoke to my breast care nurse today and told her I had decided on the re reexcision as I couldnt lose my breast for the sake of 1mm.  I am going in on Wednesday to sign the consent forms for this and the axillary clearance and she said surgery would probably be first week of Jan.  I did ask about oncotype and unfortunately the policy at my hospital doesnt offer to anyone with positive nodes.  I will wait until after the clearance and if no more are positive I will pay for it myself as I dont want to go through chemo if it wont be particularly helpful.  So everything  crossed for third time lucky with the margin.  Just want to get all this surgery done with now.  Hope you're healing well now.  I will have a drain in for 5 days which I am not looking forward to.   This feels like a neverending nightmare ....

[JD-W]

Hi Daisy,

Have you asked about the oncotype test?

Do you have a date for your next op?

Julie x

[daisydi]

Hi all, Julie wish I knew why they are insisting on clearance but they are.  My positive node showed macrometasteses so I suppose they need to check the rest to stage the disease.  I had no choice in this but then they should have done it last time so not really suprised.  So pleased no chemo required for you.  I dont seem to qualify for oncotype, dont know why.  Always feel that I am not being told the whole picture but I've had a lot of paranoia set in lately just feeling that its worse than I'm being told even though the surgeon reassured me on Wednesday that it was still early stage breast cancer.  Just wish I could wave a magic wand and it would all be over.  Not looking forward to having a bad arm. ...

[JD-W]

Hi Daisydi,
Good to hear from you and so good to hear that you do have a choice.
I’m doing ok thank you. I’ve now had my oncotype results back and my score was a 6 so no chemo needed. I’m seeing my oncologist on the 7th Jan to discuss my radiotherapy plan and the tamoxifen.
My arm is still not great...had my 5th drain this week and I’m still experiencing pain and stiffness but my consultant is saying I’m doing well following the clearance.
Do you know why they are insisting on doing your clearance? I asked that question and was told it was a precaution bordering over treatment and at the time I wasn’t happy with that but now I’m feeling reassured that at least i know the one node that had a trace in has now gone.
Keep in touch Daisy and keep as positive as you can be xx

[Carol Lina]

Hi Daysidi, sorry to hear that but Happy that you have a choice. I think you're right trying once more if it makes you feel any better. Why are they insisting on axillary clearance if only one margin is not clear? Or the sentinel was not clear too?

I wish you all the best :-)

[Charys]

Hiyer Daisydi,

I think sometimes there is no right or wrong about these things, both outcomes often have the same clinical result and you just have to do what you'd rather do. My BCN called it a 'psychological decision', as there is no clear set of guidelines or advice in either direction. If I was you I would feel the same way I think, and there are others here who have had a few attempts at clear margins made. You have nothing to lose really, and could gain not having a mastectomy. x

[daisydi]

I have had results and although all the cancer is removed one of the margins was not clear by 1mm!  They are insisting on doing the axillary clearance and I have a choice of mastectomy at the same time or one more try at the margin.  It seems such a big issue for me to lose a large breast for a mm.  So I will going for my third surgery soon and think I would like to give the margin one more try.  Maybe Im just delaying the inevitable but think thats what I want.  I have a week to think about it before I sign the consent forms. My surgeon was very reassuring saying that all the cancer had been removed and all this extra stuff is to try and prevent it coming back.  How are you doing Julie?

[Carol Lina]

Hi Daysidi, I'm so sorry you're going through all of this. Please, try to think in a positive way, because thinking everything will be bad will make you feel desperate. I know by my own experience that it's very hard, but don't allow bad thoughts grow up in your mind. This waiting time is the worst, isn't it? :-(
I wish you all the best, and remember that you're not alone ;-)

[Charys]

Oh gosh, sorry must have missed some of your 'back story' and didn't realise that this was your second surgery. So, its the 'waiting game' for you again now.....and as you say.....as results come in the 'choice' may become clearer. So sorry you are having this rather complex worry at the start of your treatment.

[daisydi]

Hi Charys I had a long chat with the surgeon today and bcn.  This was already my second surgery as they didnt know about the extensive DCIS in the first place.  I said I didnt want a mastectomy as I have large breasts and there is still a fair amount left on the bad one.  He said that maybe if just one margin needed shaving they may consider going in for the third time but definitely not if more than that.   Its just a waiting game for me again.  I will also need to decide whether to go for the anc as they "forgot" to do it last time.  Just finding it very hard to deal with ...knowing one node was positive, one negative and trying to work out the best way forward but maybe all my choices will be taken away anyway.

[Charys]

Hiyer Daisydi,

What a horrible experience, to have to wait even longer for your 'not ready' results. I do hope your feeling about them possibly not having got clear margins is not right, but if it is then you won't be alone in having that outcome. Have they said it will be mastectomy and node clearance , as some people have a further lumpectomy attempt at getting clear margins ? It will be awful to have to have further surgery and more invasive surgery, but you can rest assured that they really will do everything to make sure there is nothing left to cause further issues.

x

[JD-W]

That’s exactly what I was fearing after getting my results from the lumpectomy which was really different from the ultrasound and then the biopsy but somehow we just have to keep positive that eventually we do get some good news 🙏🏻 Xx

[daisydi]

I may get a very basic result on Friday but will get everything next Wednesday.  If my margins aren't clear I will have to have a mastectomy and axillary clearance.  I have a really bad feeling that mine is much worse than they thought.  I am in total meltdown at the moment

[JD-W]

It’s the waiting that’s the worst isn’t it 😩
Have they said when they think it will be?
Glad you got your dressings changed x

[daisydi]

Sadly results not ready so I will have to wait a bit longer but at least they have removed the sticky dressings so the blisters can breath

[JD-W]

I can completely understand how you are feeling right now but sending you positive thoughts x

[daisydi]

Thanks Julie.  I am a complete mess already.Praying for some positive news x

[JD-W]

Hi Daisy,
Just wanted to wish you luck for your results today and hope you are ok.
Thinking about you
Julie x

[Mai7]

Marla13, how are you getting on with your treatment?  x

[Kerrshay]

I am wishing you all the best on this journey. God is a healer and if you believe He will heal you, He will heal you. You will NOT die, but LIVE to declare the works of the Lord. Amen.