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Just diagnosed and wanting to talk to people who understand

delly
Member

Re: Just diagnosed and wanting to talk to people who understand

Hi Girliewhirlies 

 

Just had a quick read up on yers.

JDW - Sooo glad of your good news ref no chemo required. Hope you're healing well. Have you started chemo yet, or still waiting on?

ice_cc - Great on your clear margins and nodes. Hope chemo can be ruled out for you too. Had to larrf at your comment about "satsuma" sized ovaries!! Am having visions of two bumps jutting out from under your skin! Can sooo relate to your comment, "Just wish I could concentrate on anything other than the 'C' word". Hard for anyone at the early stages when you've all got so much going on with it. Yeh, I agree with JWD, hopefully work will provide 'some' distraction though. 

Maggiemay - Have you had your scan results yet?

 

Keep kicking at it in the delicates, everyone.

Loadsa love, Doolally xxxxxxxxx 

ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Thanks for the comments - really helpful and puts my mind at ease a bit! Heart

JaneBelinda
Member

Re: Just diagnosed and wanting to talk to people who understand

Moving from Breast Unit to oncology is, in my experience, normal. A new set of doors, new faces...but all heading you in the right direction 🙂

JaneBelinda
Member

Re: Just diagnosed and wanting to talk to people who understand

Caroline, my surgery was 28 June and I started rads on 14 August....so, this Tuesday. I am not sure that rads start as early as 4 weeks after surgery.... maybe your appointment with the radiography doctor might.... then that’s when they plan your dates for rads 

JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Great news caroline 😀 hope you don't have to wait too long for a treatment plan.xxx
ann-m
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Hi Caroline,
That is quite usual, similar happened to me. The surgeon will refer to the oncologist once their bit is done for radiotherapy/chemo.
I was told that this was already done at the MDT meeting where all our cases are discussed, so the onc is aware, but there has to be a formal referral as well from the surgeon once the final results are back after surgery.
ann x
ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

They haven't mentioned that test (something to do with whether chemo would be useful?)... To be honest, my results appointment only lasted for 5 minutes and the breast surgeon said I wouldn't be back in the breast care centre now for another year. Oncology seems to be a very separate thing at the hospital I'm being treated at, so now I'm waiting to speak to an onocologist for the first time x

Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Great news Caroline .Is the delay because they have sent a tissue sample away for Oncotype DX testing ?
ladybowler
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Caroline

 

I had my appointment with my oncologist about two weeks after I had my results, it came through the post, after seeing him I had a planning apt two weeks after that and then started two weeks after that, you will probably get something through the post in the next week xx

ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Yeah I'm not sure about what's normal in terms of waiting? I assumed the breast care nurse and consultant would outline my treatment plan today when I got the results (and also had in my mind that I'd be starting radiotherapy/chemo about 4 weeks after surgery for some reason), but they just said that they'd send a letter to oncology now and that I'd likely get an appointment to talk to them within a few weeks Smiley Frustrated x

JaneBelinda
Member

Re: Just diagnosed and wanting to talk to people who understand

Yay!!! Great news Caroline xoxox

 

Hope you don’t have to wait too long though for your treatment plan. ‘a few weeks’ seems a bit too long...?

ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Clear margins and clear lymph nodes - yay! (isn't it amazing how a breast cancer diagnosis changes your perception of what good news looks like?? haha)

 

The only disappointment is that they still can't rule out chemo because of my young age, and it sounds like I'll now have to wait a few weeks to meet with a consultant in oncology to discuss my treatment plan. I was really hoping that I'd find out what my treatment would involve today, but more waiting...

 

Caroline x

ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Thank you! X
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Good luck with your results tomorrow Caroline🤞🤞🤞🤞🤞🤞
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Awww Bless you Caroline I'm afraid the C word does take over our lives at first and your mind works overtime I know mine does!! Im glad you've got an appointment for your results and managed to get sick note sorted. Work can be good because it is a distraction as much as we all moan about work.lol
Will be thinking of you Thursday and hope you will feel more settled knowing what the treatment plan is. Also hope fertility treatment goes well.Take care. Jo.xxx
ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Thanks for the support everyone. I managed to speak to the breast care nurse today and I'll be getting my post-op results on Thursday and can pick up a sick note then to cover the time I've been off so far. I've decided to start work again as of tomorrow though, as I feel like there's no physical need to be off any longer, and it could be a while before the next phase of treatment starts (whatever that is). Although I'm starting fertility treatment today I doubt it will require proper time off except for appointments, so I should probably just suck it up and get on with things!

 

Just wish my brain would stop running riot so I can concentrate on anything other than the C word Smiley Frustrated

 

Caroline xx

ann-m
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

So sorry to hear you’re going through this needless hassle, Caroline, especially when you’re going through this.
I’m amazed about the runaround over the sick note. My GP did all the certification for me - 2 lots of 6 weeks.
You obviously need to be off for longer, it will be sorted out eventually & hopefully, work will understand this. Is it worth ringing your GP practice & just asking for it. It is what they do!
Unfortunately, the holiday period can delay things as far as hospital appointments are concerned, so as the others have said, definitely chase it up.
This will get sorted out
Sending hugs
ann x
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Hello Caroline.
So sorry your having a bad day. Sending you a big hug.I can't understand why your consultant didn't give you a sick note after the op. Ring your your breast nurse tomorrow and shout if you have too tell them how anxious you are. Its totally understandable that your mind is in overdrive it happens to us all.its a stressful time for you especially starting fertility treatment tomorrow. Try not to worry and ring them tommorow and SHOUT.
Take care.xxx
Jobey68
Member

Re: Just diagnosed and wanting to talk to people who understand

Caroline this isn't right, you should have been given a date for your results either before you left the hospital on the day of your op or within a few days of it by post, leaving you waiting like this with no news just isn't on. 

I would ring the clinic in the morning and don't let up until they tell you when you will be getting them , this is hard enough without any extra uncertainty! 

 

I didn't have a sick note as my boss paid me for time off but as Jill says call your doctors surgery and request one, you shouldn't have to be doing all of this at a time when you need to be resting and focusing on yourself but sadly some times we just have to fight for ourselves when other people don't do what they should be doing on our behalf! 

 

Fingers crossed you get some answers soon and things are the best they can be Xx Jo 

Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Its just extra stress that you can do without isn't it .Its really important to know when you will get your results as you have to prepare yourself mentally to deal with it .I can't believe yiy are having to deal with the sicknote issue .Good luck with your treatment tomorrow .
ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

I'll give the breast care nurses a call first thing tomorrow about both issues. I know this is a tiny problem in the grand scheme of things, but just fed up of dealing with uncertainty.

I feel like somebody needs to give me a kick up the backside!

X
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Why don't you also ring your BC nurse and ask when your appointment is likely to be and then at least you have something to aim for .
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

How ridiculous that you haven't got a sicknote - could you get an emergency appointment at GP and tell them how you are feeling and get a sicknote - it will probably be the GP who signs you off after this initial period anyway .They can backdate your sicknote to when your self certificate ran out..
ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Hi girls,

I had a nice weekend with family visiting, but now my mind has gone into overdrive... I'm waiting on my post-op results, but haven't been given an appointment to go back in yet. It'll be 2 weeks since my op on Tuesday. I can't stop wondering if it's likely the cancer has spread to my lymph nodes. I know if it has I'll need chemo (and might need it even if it hasn't spread), but don't know how often my type/grade of cancer turns out to be node positive.

I also still haven't been given a sick note despite asking both my GP and the consultant, and I've gone past the period I can self certify for illness at work, so I feel pressured to start work again tomorrow. But I'll also be starting fertility treatment tomorrow...

Fair to say I'm having a low day 🙁

Caroline xx

Maggiemay
Member

Re: Just diagnosed and wanting to talk to people who understand

Thank you ladies ☺️☺️

It’s all go...I’ve now had my appointment through for my MRI next Friday....fingers crossed it’s nothing in my right breast.

Hope all you lovely’s have fabulous weekend, I’m off to work!

Maggie
Xxxxxx
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Great news Maggie - glad you now have choices .xx
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Thanks maggie🤗
So pleased with your news too that's great😀. You must be so thrilled that the choice hasn't been taken away from you. I just hope you get a date soon for surgery and then it's all systems go and you can move forward. Hope you have a lovely weekend Jo xxx.
Maggiemay
Member

Re: Just diagnosed and wanting to talk to people who understand

That’s fabulous news Jo, so happy for you!!

I got some good news today too.....I've been given the go ahead with fertility treatment.I can’t tell you how happy I am. I know it doesn’t guarantee i’ll become pregnant but that choice hasn’t been taken from me. Just need surgery now to get things started.

Sending lots of hugs
Maggie
Xxxxx

ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Great news! 🙂

Hope you all have a lovely weekend; be kind to yourselves!

Caroline xx
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Thank you both.xxx
Jobey68
Member

Re: Just diagnosed and wanting to talk to people who understand

Brilliant to hear Jo, it's amazing the sense of relief some good news brings even when we have cancer! Xx

Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Great news Jo !!
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Hello ladies
I've had good news regarding op. I won't need chemo. I've just got to carry on with anastrazole and have got to have radiotherapy because I didn't have it last time. She said there was a clear margin with no vascular invasion. So all in all great news.😁 I've still got the drain as my onc is really fussy with drains and likes the out put to be 10-20ml but can cope with the drain after receiving good news. Hope your all doing well.xxx
Avibaby
Member

Re: Just diagnosed and wanting to talk to people who understand

"To chemo or not to chemo", that is REALLY the biggest question of all, isn't it?

 

Thank you for saying it so clearly.

 

Avibaby

MadAnge
Member

Re: Just diagnosed and wanting to talk to people who understand

Of course you will get a mention 🙂 xxx
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

You should write it Ange ! make sure you put us all in the credits !!
MadAnge
Member

Re: Just diagnosed and wanting to talk to people who understand

This forum helped me so much. Chocolate and vodka sprouts will never be forgotten.
It would be a great title for a book 🙂
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

yes talking to people who have been through it /are going through it certainly makes you feel less " abnormal " - weird feeling being diagnosed with cancer very isolating . Chocolate sprouts are the way to go - choc makes you fell better ,sprouts are anti - cancer and full of vitamins - perfect - it's an old joke on this thread - you don't really need to eat them !!

Maggiemay
Member

Re: Just diagnosed and wanting to talk to people who understand

Thank you jill, well I’ve definitely had my fair share of chocolate recently!! This forum is fabulous for support and just to talk - makes me feel normal (whatever normal is! Lol) xxxx

Caroline.... awww lovely I feel ya! I haven’t started anything yet in regards to IVF. I’m waiting to hear back from them too but I’m taking one day at a time. I definitely will drop you line. Xxxxx
ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Hi Maggie,

 

It REALLY IS more emotionally draining than I had imagined, so I completely symapthise. Sorry that things are delayed for you, but I'm sure your breast care team will have your best interests at heart. Fingers crossed things get moving again for you soon! 

 

The whole fertility thing felt like too much for me too on top of everything else... I'll be starting ovarian stimulation any day now before chemo and/or rads start, and I'm "looking forward" to my ovaries becoming the size of satsumas (as the fertility doctor so kindly explained!) followed by some delightful egg harvesting a.k.a worst smear test ever! Smiley LOL

 

Hang in there and feel free to drop me a line 🙂

 

Caroline xx

Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

It's very very hard in the beginning Maggie -so much to get your head round when you are mentally and physically exhausted . Its a bit like dealing with a death - you have all these things to sort out /deal with when all you really want to do is hide under the duvet weeping with a large bar of chocolate /bottle of wine 😳.
Maggiemay
Member

Re: Just diagnosed and wanting to talk to people who understand

I’ll keep my fingers crossed 🤞🏼 for you too Ladies
Xxxx
Maggiemay
Member

Re: Just diagnosed and wanting to talk to people who understand

Hi Ladies,

Hope your all recovering well, drinking lots of tea and eating lots of cake 🍰 or chocolate 🍫 or both!

I’ve come to a bit of a standstill with everything. I’m waiting for my MRI biopsy appointment for my right breast. If everything had gone to plan I would have had surgery today and out the other side. I just want it over with. I didn’t realise how emotionally draining it was, I’m exhausted all the time.

I also had an appointment with the IVF councillor on Monday.. oh my goodness I sat and sobbed the whole hour. It’s all a little too much at times. Thankfully I’m still working, I need to keep that normality for a little bit longer.

Lots of hugs to you all
Maggie xxxxx
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

😂😂
I'll keep my fingers crossed for you too.xx
ice_cc
Member

Re: Just diagnosed and wanting to talk to people who understand

Same here... to chemo or not to chemo, that is the question 😂

Fingers crossed for you! I find out at some point next week X
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Hi Jill. I am hoping I get post op results on friday.I definitely know I've got radiotherapy it's just chemo. I'm hoping I don't have chemo but as this is a reoccurrance I guessing I will. Jo.xxx
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Do you get your post op results on Friday ?
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Hi Jo ,sorry you are still lumbered with the drain - just think of the feeling of freedom when you can finally ditch the drain bag !!
Jill1998
Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Hi Caroline ,yes it's a bit of a shock at first when the dressings come off - the bruising is pretty spectacular but the scars do actually fade quite nicely over time they are very skilled at what they do - I had lumpectomy and mine was just round the nipple so after a couple of months it was barely noticeable.I do have a bit of a dent however - handing for balancing popcorn etc whilst watching TV 😳Glad you have stopped leaking !!
JWD
Member

Re: Just diagnosed and wanting to talk to people who understand

Hello Jill
Not too bad thanks. I am enjoying the European championships on t.v. Still ringing nurse everyday with drain output it's still 40-50 ml and they like it to be 20ml.Hope it slows down for Friday when I see my onc. I've nick named it Drain The Pain!🙈 Its much cooler here today and quite breezy ..Thankfully.
Caroline try not to worry about scars they will fade get moisturizing 👍
How is everybody else doing? Xx