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Just diagnosed and wanting to talk to people who understand

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

Got results today to say that the cancer is ER+. Hoping that's a good thing as they might opt for hormone treatment instead of chemo?? Desperate to just get on with treatment now and starting to worry that the lump has got bigger.

 

On a positive note, I had a lovely lemon pastry today Smiley LOL

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

Hi Delly ,still having a lot of health worries ,just one thing after another, going through various tests re joint /leg pain - won't be running a marathon in the near future !!! No sprout cake wouldn't do it for me either !
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Re: Just diagnosed and wanting to talk to people who understand

Jill - How you doing flower??
Anything that isn't sprout flavoured, preferably Lemony or Dark Chocolate for me pleeeease. Taa muchly xxx
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Re: Just diagnosed and wanting to talk to people who understand

Carrot cake for me ...😊
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Re: Just diagnosed and wanting to talk to people who understand

Hi Caroline ,it is very overwhelming in the beginning - having breast cancer becomes a full -time job and it's also like learning a different language .I had a different sort of cancer last year and they asked me to agree to take part in some research when I was still all over the place - it was just one more thing to deal with and I told them no .Dont be pressured into anything and if you are unsure about anything ask don't be railroaded into anything .
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Re: Just diagnosed and wanting to talk to people who understand

Coo Caroline

You've certainly taken the bull by the horns in just the last two days. I'm madly impressed and take my hat off to you girl.

I'm presume you're still waiting on Path results from your biopsy are you, as they don't yet know whether ER +ve -ve ??

Was there any family history of BC, Caroline?

I think you've done the right thing with regards to going ahead with harvesting some of your eggs. At least you then have the option, as opposed to if not now, and you then changed your mind about kids in the future, you'd have regrets.

I totally agree, it's weird the not being in control. You're basically having to hand your body over and trust in the onco specialists and team to do what's best for you.

The other thing I found difficult, and others mention too, is the sudden loss of trust you feel in your body. The feeling that it's let you down. Until something like this, we tend to think we're indestructable and take it for granted. And can we ever trust it again? creeps in. Something else that can't be controlled by ourselves, but positive after results and longevity are so much higher these days, with the improved ability to diagnose so much earlier, improved surgical techniques, and more sophisticated treatments greatly reducing reoccurrence.

At least your partner is actively aware and supportive, rather than dumbing it down, or burying his/her head in the sound.

And yeh, it's worrying or frightening to feel the lump once it's been diagnosed. You tend to think all the time it's there it's going to be spreading. But that's a very quick response to be treated 2 weeks after your diagnosis.Fantastic. Great to know they're so on the ball with you and "it".

How big is it? You didn't say.

*Just a tip * - Get loads of healthy food inside you over the next couple of weeks, with lots of lean protein, prawns, fish, chicken, liver (if you like it) to boost up your iron levels, lots of the colourful veges and salad stuffs. All helps prepare the body to repair itself that much better, therefore that much quicker.

So you'd better share what's left of the cake out with us lot then - capische Smiley Tongue

 

Keep posting flower. (What kind of cake is it anyway? I'm teasing.

Loadsa love

Delly xxxx

    

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

Thanks for all the lovely, helpful responses ladies!

 

It's been a whirlwind couple of days and my partner and I were given 24 hours to decide whether we wanted to freeze eggs/embryos or not (quite a lot to take in for someone who has really never thought about kids until now!). Currently looks like lumpectomy plus some lymph nodes on 1st August, followed by a cycle of IVF (freezing the embryo for future use), then radiotherapy, then chemo and/or hormone treatment, OR possibly chemo before radiotherapy, the doctors don't know yet if I'm ER positive or negative... argh! 

 

I'm struggling more with the impact on others than with how I feel myself at the moment, and my partner seems to be taking this much harder than me. I've also eaten way more cake than I should as a coping mechanism! Smiley LOL

 

I've had more letters in the post already for various appointments etc than I can shake a stick at, including a request to take part in some research, which is all just a bit much 4 days into my diagnosis! I'm not used to not being in control of things, and feel a bit like I'm on a really fast train than won't stop.

 

Aside from all of that, I just want this thing out of my body now as I hate being able to feel it so easily!

 

Caroline x

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

I hate anaesthetics too - I think the loss of control is a difficult one - I just talked non stop to that anaesthetist to distract myself but it is all over every quickly and despite my fears I was so relieved to be getting the cancer cut out that I was almost happy to be there !
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Re: Just diagnosed and wanting to talk to people who understand

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

Hi Caroline

 

A warm welcome from us. I'm glad you've posted on this Forum, but not happy for your reasons to. It's a great place for support, advice, similar buds to chat to, or have a rant to or with at ANY time, and hopefully have a few laughs with to lift your spirits along the way.

I'm so sorry on your diagnosis. Yes, you are very young, but your age and the fact it's been found so soon are both plusses for you to concentrate on.

That's something of another shock, that you say you've never wanted children - Jeez, I can bet a threat to your fertility has probably made you think or feel differently on such things.

I can't advise on rads, but I can tell you from both of my mastectomies (2006/07), a delayed recon op, and other knee ops, general anaesthetic is THE absolute least of your worries. Please don't worry yourself about it. All the anaesthetic teams I've experienced have been absolutely fantastic - honestly. The BEST of hospital staff. And it literally gives you the most wonderful sleep you'll have ever had. Wear your best underwear - just gives them something to talk about whilst you're under. . . . I'm joking (tho' 'I' did!!). You'll be amazed - one minute you're counting yourself down to "going under" and then waking up a few hours later and it being all done. 

Time off will very much depend on whether you're having a lumpectomy, as opposed to mastectomy? Do you yet know, or do you yet have that decision to make? I'm guessing lumpectomy, as you're saying radiotherapy treatment afterwards. Took me two weeks to fully physically recover from a mastectomy, but I didn't have to get back to work - so Jills' three weeks to fully recover is probably more sensible. 

Ask your onc team, and some of the girls on here who've had rads will be able to advise you ref time off for that. Tho' it seems to depend on the individual. I've known friends and other women who haven't suffered much in the way of side effects from radiotherapy, and have just slotted their appointments into their work. But also others who haven't been able to so easily.

 

Please keep us in touch with where you're up to with it all, and how you're doing, feeling. Have a rant, sob, or just come and grab a glass of Jills' famous voddie/sprout brew - it's like anaesthetic anyway!! Just keep yourself away from any open flames!!

 

Loadsa love, Doolally xxxxxxxxxx

 

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

My Dear Jill,

 

I felt quite guilty at proferring your name to answering this thread, despite it being your own original. Bit cheeky of me really and just came on to say sorry for. But looks like I needn't have worried. Bloomin marvellous response really. I doo hope you didn't mind, my darlin girl. Sorry if you did. But obviously you didn't, thank goodness. So I'll shut up on that then !

 

Jackie - I'm sooo bloomin sorry on your diag. It's a total bummer isn't it, to say the least. Completely knocks you off your "life" perch. Please DO keep us informed with what's happening with you, will you. Glad to hear you saying you're doing okay? but totally with you on the anxious Smiley Frustrated

 

MadAnge - I've always loved your name.  Crikey 3 1/2 stones? Hope you can keep at it girl. We'll give you lots of gee-ing up, if you want or need it.

 

Hey Jill, Fuffs, Jobey, Mad Ange. Ann-m - Have no worries girls. I took it on board and have been brewing the voddie sprout mixture since this thread's fizzle. But be assured, that fizzle just added to its VaVaVoom impact. What do we call it - our founder's "Jill's Bum Brew"? Doesn't have the right ring somehow. Any better names greatly appreciated. Please note, my own flatulance is to be excused - it's them bloomin sprouts. It was purely due to the tasting process - hic hic and pheeew!! Tastes real good tho'.

 

I'm off to respond more seriously. Good to see you all 

Lotsa love to everyone

Doolally xxxxxxx

 

 

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

Hi Caroline, I think Jill hit the nail on the head.
Take one step at a time. Each stage has tests. I always find the worst part is waiting for results but once you have them you can then put a plan in place.
As far as working is concerned it really depends on your job and what type of surgery you have.
I was diagnosed at 40. I was lucky as I had already had my 2 children so didn’t need to go through the fertility tests.
Just ask whatever questions you have. I am sure some one here may have had a similar diagnosis or treatment.
You just have to note that everyone is treated differently no 2 treatments or side effects are the same. People all react differently. Take Care Ange xx
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Re: Just diagnosed and wanting to talk to people who understand

Hello Caroline ,welcome to the roller coaster !!! There is so much to get your head around in the beginning so many questions and fears .The best advice I can give is don't jump too far ahead or you will becime overwhelmed ,take each step at a time ,recover then move on to the next and do not google stick to this site and Macmillan for information .Everybody's experience is different - how you recover from the op depends on the kind of op you have - lumpectomy /mastectomy and whether you have more than a couple of lymph nodes removed also how you feel emotionally as it's a bit like being hit over the head with a sledge hammer !!! It will also depend on your job -but you will need 2/3 weeks to recover from the op if it is straightforward .Some people do work through radiotherapy but it can be berry tiring and involve a lot of travelling and appointment times can be all over the place.The fertility issue is just another added thing to get your head around but at least it keeps your options open for the future.There is lots of support and advice here from people who understand .Come and talk to us whenever you feel the need there are quite a few newly diagnosed ladies around on the forum .Best wishes Jill.
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Re: Just diagnosed and wanting to talk to people who understand

Hi everyone,

 

I was diagnosed with stage 1 or 2 invasive ductal cancer yesterday after finding a lump a few weeks ago. The consultant was really surprised with the result given my age (31), and they've said they'll be treating it aggresively because I'm young. Surgery in two weeks followed by radiotherapy, and the doctors don't know yet whether chemo and/or hormone therapy will be needed... I've never been under general anaesthetic before and I'm a little worried about it. Any words of wisdom on how to prepare for this and for the radiotherapy? What should I expect realistically? Will I be able to work or need time off??

 

I've also been told I need to go to the fertility clinic... I've always been adamant that I don't want children, but all of a sudden the thought of fertility being an issue in the future seems scary. So much to take in. 

 

All a bit surreal at the moment, but so glad now that I regularly check myself!

 

Caroline x

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

Medicinal purposes obvs !!
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Re: Just diagnosed and wanting to talk to people who understand

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

Sure do x
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Re: Just diagnosed and wanting to talk to people who understand

You need the vodka ...😃
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Re: Just diagnosed and wanting to talk to people who understand

Yes I still wish we had put a patent in it though. Lots of shops got in the band wagon but they did forget the vodka xxx
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Re: Just diagnosed and wanting to talk to people who understand

I like sprouts, Jill, oh...& chocolate & vodka too 🍸😁x
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Re: Just diagnosed and wanting to talk to people who understand

Got us through some hard times those sprouts Ann - oh and the vodka helped !
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Re: Just diagnosed and wanting to talk to people who understand

Ummm...chocolate sprouts & vodka, remember it well...😁
ann x
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Re: Just diagnosed and wanting to talk to people who understand

Sprouts with chocolate fondue to dip them in - yum ...
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Re: Just diagnosed and wanting to talk to people who understand

Don’t forget the chocolate- no sprouts with out chocolate Smiley Happyx
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Re: Just diagnosed and wanting to talk to people who understand

And the vodka ...😃
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Re: Just diagnosed and wanting to talk to people who understand

Get the sprouts out .
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Re: Just diagnosed and wanting to talk to people who understand

Party !!! 😃
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Re: Just diagnosed and wanting to talk to people who understand

It looks like it Smiley Happy xx
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Re: Just diagnosed and wanting to talk to people who understand

Hey are we having a reunion! 👍😂

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

Hello Jill and Ange! 🙌
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jill. Xxx
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Re: Just diagnosed and wanting to talk to people who understand

Hello Ange !!! ✋️
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jackie,
I found the first few weeks the most challenging.
Once they determine your HER status they can put a plan in action.
If you are you get a treatment called Herceptin. It’s normally given 3 weekly for a year ( unless that changes). It’s not too bad.
The other thing was all the abbreviations but you get there in the end.
Take care xxx
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Re: Just diagnosed and wanting to talk to people who understand

Hey all,
Long time no speak. I have just had a notification.
Looking back at old posts. It’s been 3 years since diagnosis and I am not going to say it’s easy.
I am struggling with the new “normal”. I am on Tamoxifen and biophosphates they all have their own side effects.
The hardest bit it trying to loose weight so they will allow me to have my reconstruction. 3 1/2 stones is a lot when you are on lots of meds and the stress of life takes over.
Hope everyone is doing ok.
Mad Ange xxx
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jackie ,it's very hard in the first few weeks when you reallly don't know what you are dealing with and they are piecing together all your results - it does get easier -do you have a date for op /next appointment ?
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Re: Just diagnosed and wanting to talk to people who understand

I am just diagnosed but invasive ductal- now awaiting HER2 test results so they can decide what treatment to start with - feeling ok x just anxious about what’s to come x
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Re: Just diagnosed and wanting to talk to people who understand

Yes Delly it was a great thread and a good meeting place for people who had just been diagnosed and we had some laughs too - I was hoping some people may just naturally take over the thread but didn't happen .
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jill and anyone else looking in.

 

Jill - It's such a shame this thread seemed to just fizzle out, because it was a great starting and supporting point for just that, i.e. anyone "Just Diagnosed". Lot's of experienced postees, from varying years post treatment, for supporting and proffering advice to newly diag postees. I've just spent a while reading back through a couple of years - provided lots of chuckles as well as seriousness. Needs reviving really.

 

Bibi - That was a fantastic helpful link you gave us. Thanks very much for it. A really good source of useful information for "Newly"s (diagnosed) and older Booblay's. That was a pun on " Buble' " (as in Michael, but I haven't got the French accent key on my keyboard). 

 

So if you're a "Newly" i.e. "Just Diag", looking at this, pop a post on. I'm sure Jill, the founder of this post, and or others will be along shortly to say a friendly "Hi".

 

Jennifed - Hi girl. Are you still struggling on Extemestane? Or have you switched?

 

Lotsa love to everyone

DoolallyDelly xxx

 

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

That's a really good account Bibi - sums it up well.
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Re: Just diagnosed and wanting to talk to people who understand

Just read the link to the post which BB left and would encourage others to read it as it resonates complete understanding of the situation
So well written. ... so true
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Re: Just diagnosed and wanting to talk to people who understand

Hi ladies I just found this post, which pretty much sums up how I felt after diagnosis & wondered if it might be helpful for you https://ificouldtellyoujustonethingcouk.wordpress.com/2017/09/04/feelings-breast-cancer/ Good luck for your treatment. BB
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Re: Just diagnosed and wanting to talk to people who understand

So sorry to hear about your friend so very sad big hugs xxx

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

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

Yes, it's weird to look back -probably best not to most of the time -I started the thread day after I was diagnosed .😳
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Re: Just diagnosed and wanting to talk to people who understand

Gosh it is really funny I have just clicked on this thread and seen the posts from Delly and Jill 12 months ago asking how my rads were going and Delly about the Progesterone thread.  It is really spooky that seems soooo long ago now.

 

Helena xxx

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

Thanks Jill. I had my overies whipped out two years ago so whether or not I need the drug is probably up for discussion! All the best for 2018. Jennifer x
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Re: Just diagnosed and wanting to talk to people who understand

Hello ,Jennifed ,lovely to hear from you !!! Glad you are doing well .I am not currently on any medication - it's a bit of a long story but for the time being due to other health issues it's been agreed that I won't take anything - I had hysterectomy in April so now have no ovaries producing the "dreaded oestrogen " I miss oestrogen !!! I talk to quite a few ladies who have swapped to Tamoxifen as it is kinder on the joints /bones - you can take it pre or post menopause ,statistically the AIs are more effective but it's only marginally .Dont be fobbed off ask about the alternatives and ask to try them see if it helps .You could also ask the questions in the Ask the Nurses section on the forum - they will have all the facts .All the best for 2018 - fingers crossed for good health and less creaky joints !!! Jill c
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Re: Just diagnosed and wanting to talk to people who understand

Hallo ladies. I haven’t been on this site for over s year but I received an alert and ended up reading all your lovely posts. Glad to see that Jill is still keeping everyone’s spirits up. It’s now over two years since my rads ended and life is pretty good again. I still have the odd day of incredible sadness at what has happened and I do worry about reoccurrence but as time goes on those days are becoming less frequent. So for those of you still in treatment or closer to it believe me, things do get easier with the passing of time.
Jill - we went through treatment at the same time and I noticed that you are now on tamoxifen. I expected to be switched to this drug after two years but the doctor said that there was no advantage to it. Is this a Fob-off? I’m still on extemestane, with all the aches and pains that go with it, I hear that tamoxifen is kinder - is it? All the best to you all. Jennifet
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Re: Just diagnosed and wanting to talk to people who understand

Merry Christmas Delly !!!
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Re: Just diagnosed and wanting to talk to people who understand

A day over my last post here.

Well, don't know if most of you have deleted this thread from your lists, but to anyone who hasn't and may pop in, am wishing you all a very Merry and enjoyable Christmas, along with a Happy, Healthy, Content and Peaceful New Year.

Hope you are all very well. If not, that you soon are.

Lotsa love and all good wishes

Dellywellydingdong xxxxxxx