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Any support appreciated as newly diagnosed

43 REPLIES 43
HazelBarney
Member

Re: Any support appreciated as newly diagnosed

Gilly, I feel for you so much, waiting for results was the worst thing and I know I started feeling pains all over my body and imagining I was riddled with it, the worry sends you crazy!

 

As for the biopsy, mine was painful for a good few weeks after.

 

It is awful that you're having to wait so long for confirmation. I got myself into such a state one day that I rang my BCN and she told me some results over the phone which I would otherwise had to waited until my next appointment for. Maybe that is worth trying on Monday?

 

I know its easy for me to say but try not to think about what it might be until you know for sure, keep busy and take one day at a time, you will be up and down like a rollercoaster.

 

Take care.

 

Hazel xx

 

 

Sissylw1980
Member

Re: Any support appreciated as newly diagnosed

Hi gilly, I had a biopsy nearly 4 weeks ago and my breast is still bruised and sore even now. My BCN says that's completely normal and any swelling and pain would be the bodies natural reaction to the procedure. Sissy x
gilly
Member

Re: Any support appreciated as newly diagnosed

Hi all

Thanks for your kind words and support. Yes lump is 2.5cm not mm but seems like its getting bigger also very painful and stinging spreading into armpit.  There does seem to be a huge difference in waiting time for results. I think I have to wait so long because they are so busy. I'm in Plymouth. Anyone near?

Mariej2205
Member

Re: Any support appreciated as newly diagnosed

Hi gilly I totally feel for you we all have hiccups along our journey and it's really hard. I was diagnosed 18th June then nearly 10 weeks before op and now 11 weeks till appt with chemo nurse and 13 weeks since op when chemo will start... Round about 20 weeks in all since diagnosis talk about cracked up!!!! I had a lumpectomy and 7 days after op went back to work I've been away for a long weekend and been on holidays abroad for a week not had another day off work since but I am taking it easy as don't want to be to tired for the 18 weeks of weekly chemo. I've tried normality and it's working okay.. When one stage finishes you can't wait to get to the next one and so on. This website is fantastic I've learnt so much and I now feel prepared for what's ahead which makes me feel more in control and better in myself x let us know how things go here to chat anytime x x x
Jobey68
Member

Re: Any support appreciated as newly diagnosed

Hi Gilly, sorry you have found yourself here ! We all try to help and pass on our experiences and of course there is an abundance of support 😊 It all makes your brain explode in the beginning and you can't begin to make any sense of it initially but it does all get a bit easier the more knowledge you gain, can't imagine why you are having such a long wait for your biopsy results, that awful! Like Jill mine were a week and that was hard enough, try not to jump the gun about treatment as it may not be anything like you are imagining, if you only have a 2.5mm lump then it's minisule, or did you mean cm?

Lumpectomy neednt leave you with a dent, mine didn't , I had an area above my nipple removed and other than a thin scar you would never know.Try not to jump the gun as you don't even know for certain it's breast cancer yet, they have been known to get it wrong, they didn't think mine would be but it was! Xx Jo 

 

Ellie
Member

Re: Any support appreciated as newly diagnosed

Hi Gilly,

 

Sorry to hear your news, I'm 8 weeks since diagnosis, have had 2 lots of surgery(lumpectomy and reexcision to try get clear margin) and need chemo due to 1 of 3 nodes being positive, chemo starting this Monday.Will need further surgery after.

 

That is a long wait for results of biopsy, I got mine back a week later exactly(under nhs). Whatever they decide surgery wise don't let them make you wait too long, I waited 3 weeks from diagnosis till surgery and in hindsight I wish it had been sooner as lump was bit bigger than had been measured on ultrasound and got regraded from 2 to 3. I had moved to private system due to having insurance and should have insisted it be sooner but surgeon said it will make no difference....

 

From the knowledge I have I don't think you have to wait 8 weeks after surgery to start chemo. Depends how you heal but I think 3/4 weeks is enough. Mine is starting 3 weeks 2 days after last surgery.

 

Wait and see what the results say, you may not even need chemo....every case is different....if you do I don't think working near lots of children will help as immunity will be lower.

 

Good luck, let us know how you get on x

 

Jill1998
Community Champion

Re: Any support appreciated as newly diagnosed

Hi Gilly,you have quite a wait for your results mine were back in a week.Waiting is horrible and you can't really think about anything else can you.Hopefully you will get some answers and a clear plan next week.You will get lots of support and advice on this forum and there is usually someone who can answer your questions.Let us know how you get on.Jill.
gilly
Member

Re: Any support appreciated as newly diagnosed

Hi people

 

So glad I've found this forum.  Found lump on 25th Sept, hosp appt 13th Oct (Breast Cancer Awareness Day, oh the irony).  Had mammogram, ultrasound and biopsy.  2.5 mm lump on right boob but near the top by rib cage.  Consultants 'pretty certain' its cancer.  We are taking that as 'it is' as they gave no indication of doubt and must see 100s every year.

 

Have to wait until next Friday 30th for results and absolute diagnosis and the wait is driving me mad!  I work in a school and its half term week but never have I wanted half term to go so quickly.

 

Its 10 days since I had biopsy but it is still sore and stinging sensation spreading into armpit.

 

I know that I will have to have surgery to remove lump but dont know if it will be full masectomy.  If they just cut out lump and some healthy tissue around it I will be left with a crater!  Have read on here that sometimes better to have masectomy as it speeds up the rest of the treatment??

 

Million and one questions I keep thinking about but am hoping that you lovely people can suggest some too so that I have everything covered.

 

Head really not engaged when we were with consultant but husband said that they said I would prob start chemo 8 weeks after surgery which would be January ish time.  Did you manage to go back to work in between?  I work in a school which has to be the most germ ridden place in the world in January so thinking it would not be a good idea for me to go anywhere near.

 

Have no idea what type my lump is so all conversations on here about various treatment currently going over my head.

 

Am starting very positive about all this.  My son says I'm the strongest woman he knows.......we'll have to see.  Am starting to write a blog as I've read that it's the best way to keep frinds and family uptodate and avoids awkward conversations.

 

Think I will be using this forum a lot in the next few weeks!

 

familytree
Member

Re: Any support appreciated as newly diagnosed

Great to hear you are well through it Judi. Inspiring. X Lorna x
421_cat
Member

Re: Any support appreciated as newly diagnosed

Hi hope you are better now. I am writing to you because I have just been diagnosed with very similar breast cancer to yours. It is grade 2  5mm size Er positive and Her2 negative.It was a routine mamogramm test and radiologist found this 5mm lump in my left breast, he took an ultrasound but said lymph nodes not effected.Now with the lab results since it is lobular I need to take an MRI to check my other breast.If they find another cancer in the other breast do they operate twice or once? Why did you need chem? Sorry for asking these questions but I don't know anything about these things. I hate the waiting and I feel like screaming. Thankyou for any help.

Good luck with your treatment.

Mynahcharlie
Member

Re: Any support appreciated as newly diagnosed

Try to get the Oncotype DX test. That analyses whether it is or is not useful to have chemo. I was grade 3 and they wanted to give me chemo but after the DX test stated that it would be useless for me (it is a genetic test) I didn't have to.

Don't understand why not more people insist on it. There are certain requisites, you have to be stage 1, and have max of 1 node involved. And be Her2 negative but estragen positive. It has been accepted by NICE but of course they hold back on giving it as it costs a lot. 

Good luck,

Margaret

ollisj6
Member

Re: Any support appreciated as newly diagnosed

Hi ladies it seems an age now since I wrote on this forum thank goodness for it I've met and talked to some fantastic ladies it was November 2014 when I went for a routine mammogram not thinking anything of it got on with my work etc then bang a phone call from my local hospital turned my life upside down went and had a biopsy still in the back of my mind thinking it was nothing serious there was no lump or any indication anything was wrong then those words rang in my ear it was possibly grade 2 ductal I went in on December 23 my wedding anniversary!!!!!for a wle and the results of that were grade 2 but lobular/dcis lobular is hard to detect I had no lymph node involvement or vascular involvement but I was her 2 positive plus hormone positive which meant I had to have chemo /radiotherapy which I did followed by herceptin of which I am on number 13 out of 18 no problems at all with that I'm currently taking letrozole for five years as I am post menopausal to decrease the oestrogen which I am struggling with joint pain is not so good at the moment but on the whole I feel great and honestly the time has flown by you will all be fine keep busy and strong and always come on here if you feel down  there are so many ladies with different stories and stages to talk about lot's of love Judi

familytree
Member

Re: Any support appreciated as newly diagnosed

Good to hear your story Tracy, stay healthy x blue it's a pain waiting for results, such an anxious time. Just have to get used to it..and breath x love Lorna x
bazza7676
Member

Re: Any support appreciated as newly diagnosed

Tracy, always good to see people who have been through it come back and inspire, guide help people like my Nikki through this (she's the same, lumpectomy, anc, chemo, rads and tamoxifen) x
Tracy1967
Member

Re: Any support appreciated as newly diagnosed

Hi ladies, just popping in from the November Newbies 2013. If you're her2 positive unfortunately you must have chemo to recieve the herceptin meds (part of NICE requirements). I wasn't her2 but ladies within our group were. 

 

Good luck to those receiving pathology results next week, as others have mention - 1 thing at a time.  Concentrate on the now and break it into stages (surgery, chemo, rads, tamoxifen were my stages).  You'll all get there and be amazed how quickly the time passes when your going through treatment. 

 

Stay strong, wishing you ALL a speedy recovery XXX

Blue-rose
Member

Re: Any support appreciated as newly diagnosed

Thanks jill

 

it all seems a minefield, I've no idea what to expect.

 

its been a frustrating day, had a call this afternoon to say they have to delay my results appointment from Tuesday to Thursday, they told me it was an overbooking of appointments. Wasn't happy so rang breast nurse and she said it got changed as results wouldn't be back. 

 

I feel like I'm over reacting but it seems such a long way off. Just want to know now, think maybe it's the control freak in me lol. Trying to keep things together but I feel exhausted by it all. 

 

Seems from other threads I've been reading that all the waiting is pretty standard. Rant over 😞

 

hope you are well xx

Jill1998
Community Champion

Re: Any support appreciated as newly diagnosed

Waiting to know what happens next is the pits, you can't relax or make any plans til you know .The treatment plan can be quite a complex thing I've come to realise. , lots of factors are included in the decision making re further intervention,size and grade of tumour,your age, HER. 2 status, lymph node involvement and position of tumour , all these factors can be put into computer programme used by the Oncologists to predict what benefit you would get from chemo and the chances of reoccurrence .
Blue-rose
Member

Re: Any support appreciated as newly diagnosed

Hi all

 

how is everyone today?

 

seems most of you are further on than me, I'm confused by the grading and treatments. I don't get my full results until next thursday. Discussed the possibles with the breast nurse.

 

if I'm right, and I'm not sure, you only go through chemo if the tests show it's not hormone driven cancer. Have I got that right, they haven't really explained the grading. I've had 2 lymph nodes removed, not sure if that's a good sign or not.

 

it looks like the surgery went well, had the dressings off yesterday and they said it healing well but had lots of pain again today.  Trying not to think that I might have to have more done.....

 

finding it hard that this is only the first stage, the waiting for results is mind boggling, I can't wait to get back to work so I can think of something else.

 

Thanks all for your responses, it shocks me of how many are going through this.

 

Sue xx

 

 

familytree
Member

Re: Any support appreciated as newly diagnosed

I asked that Marie and they said not...blanket treatment throughout UK x
Mariej2205
Member

Re: Any support appreciated as newly diagnosed

I know it's so hard to get your head around....I know I'm having chemo and herceptin and radio. Do they treat it differently in different areas? I'm in Wales.
bazza7676
Member

Re: Any support appreciated as newly diagnosed

Age, grading, lymph node involvement and probably the doctors choice
familytree
Member

Re: Any support appreciated as newly diagnosed

Just me trying to understand why people with same diagnosis get different treatment x
bazza7676
Member

Re: Any support appreciated as newly diagnosed

They have a rating and affects the percentage benefit of chemo, anything over 5 and they recommend chemotherapy
Mariej2205
Member

Re: Any support appreciated as newly diagnosed

I know I'm HER positive?
Mariej2205
Member

Re: Any support appreciated as newly diagnosed

Mum had masectomy of left breast reconstruction and radiotherapy. No chemo and no tamoxifen.
familytree
Member

Re: Any support appreciated as newly diagnosed

Great to hear about your mum Marie. Were you ERneg? I know a woman who had it all 35 years back with a limp the size of a golf ball. Still here to tell the tale...that will be all of us!!!!! 😉 x
bazza7676
Member

Re: Any support appreciated as newly diagnosed

 Marie, what treatment did you mum have (if you don't mind me asking)?

Mariej2205
Member

Re: Any support appreciated as newly diagnosed

Hi Lorna
I'm not sure if I have to have chemo because I'm 45 or because it was positive for both targeted therapies? My mum had it when she was my age and she's 75 this year!! Positive and strong is definitely the way xx
familytree
Member

Re: Any support appreciated as newly diagnosed

Hi blue, had my op in April follies by rads and taking letrozole as it was oestrogen pos. It's true what Marie says as in step by step. I focused on the moment and despite gremlins creeping in I tried to keep busy and stay positive..Yea! Easy peazy ...not! Marie why you having chemo when it wasn't in lymph nodes? I thought that was the only reason..Oh is it your ER result? Good luck ladies...lots of love x Lorna
Mariej2205
Member

Re: Any support appreciated as newly diagnosed

Hi blue rose
My name is Marie and I'm 45. I got diagnosed with PBC grade 3 on 18th June. I have had the lump removed and it had not spread to any other parts. I am now waiting to go on to the next stage which is 21 weeks of chemo and then 4 weeks of radio therapy. My advice would be not too look too far ahead as you can drive yourself mad! Get the op done and then look at the next stage as if there's one thing I've learned as you go through the stages you think your all prepared and then realise you weren't really!! One step at a time! Good luck lovely lady keep us posted. Xx
Blue-rose
Member

Re: Any support appreciated as newly diagnosed

Thanks Lorna

 

how long ago was your surgery?

 

I know we can only take it a stage at a time, I just keep thinking of getting well enough for the next bit.

 

hubby has struggled but been great, I'm not sure how to help him. I've got lots of support from family and friends but he hasn't had an outlet. He's been scaring himself with research on it all but thankfully not telling me what he's been reading. Can't see the point in worrying about stuff that might not be relevant to me.

 

there are so many variants on treatment, I never realised that. 

 

Its helping to to read through the posts on here, thanks everyone who is sharing xx

familytree
Member

Re: Any support appreciated as newly diagnosed

Sounds a horrid experience Sue. My op was delayed but my family were allowed to wait with me until op. They had no beds in ward so I was kept up in surgery to recover so they let them come up and sit with me. No complaints, they were lovely. I only had lumpectomy so can't advise you on what you have had. It's all a struggle but you're on your way to ridding yourself of bc so hold that thought. Sending love Lorna x
Blue-rose
Member

Re: Any support appreciated as newly diagnosed

Hi everyone

 

thanks for your responses, it's took me a while to come back on, think I've been avoiding things a bit.

 

had a mad cleaning stint before my surgery last week, so glad I did as I didn't realise I would feel so drained.

 

had my first shower alone today....go me !! And back to wearing proper clothes.

 

has anyone else had the Grisotti flap surgery? I'm glad they could save part of the breast but was shocked at how much had gone. Having very strange stinging sensation through the breast...very odd feeling as I know the nipple has gone. I'm back at the hospital tomorrow to have the dressing off, bit worried about how it will look, I've googled the surgery, not sure if that was a good idea or not 😞

 

Get the path results next week but trying not to focus to much on it.

 

was not impressed with the hospital, was on a general day surgery ward and they weren't prepared. Didn't let anyone stay with me at all so was on my own for all of it, they even questioned why I was crying after I had come round. They also had to go hunting down a support bra to go home in as they had none on the ward, anyone else have this type of experience? Really considering complaining as felt their care wasn't good, I'm not usually one to make a fuss but was not expecting that.

 

hope everyone is doing well with your own treatments

 

love Sue xx

 

 

Sarahd-1
Member

Re: Any support appreciated as newly diagnosed

Happy birthday Spongebob 🙂 xxxxx
familytree
Member

Re: Any support appreciated as newly diagnosed

Lovely inspiring post Sarah as always. You always lift my spirits, thank you x x
spongebob52
Member

Re: Any support appreciated as newly diagnosed

Dear newbies,  Sorry you've had to join us all on the forum.I am celebrating my 53 rd birthday today, reflecting on what a year I' ve had. All going along fine, 2 children doing  exams, work lovely new job as community neonatal nurse, married 27 years., then found lump in March.

Today 7 months later, on sick leave ,however looking forward to returning to work next month.Managed to avoid radiation and chemotherapy by having  mastectomy and breast reconstruction at the same time, following initial  lumpectomy failed to give clear margins.In hindsight would have gone straight for mastectomy and immediate reconstruction.Once the lumpectomy is performed your no longer an emergency and so further treatment can be prolonged

Immediate reconstruction is reported to have a better outcome.It is however a long operation 10 hrs, followed by a 7_10 day stay in hospital, followed by 3 months wearing stomach binder and support bra 24/7.Personally I haven't regretted it out come one new boob, made of my own live tissue which feels pretty good, looks fantastic , waiting for tattoo but not at all disappointed .However it's not for everyone.

I would have  gone for mastectomy straight away if I'd had a crystal ball, but still have enjoyed a hav ing the whole of the summer off. I've managed to return to work before sick pay runs out , my children did well in there exams and off for lunch with my friend today.

The main thing I've learnt is that things don't happen quickly with breast  cancer, there's a lot of waiting but the treatment is wonderful , and different for each individual so hang on in there and use this site for help support and advice.Hope this helps Sarahxxxx

Ellie
Member

Re: Any support appreciated as newly diagnosed

Hi Blue-rose

 

I was diagnosed with the same on 26/8 and my surgery is also on 17/9 ! I have also only started looking into things in the last few days and came across this forum earlier. 

 

I am quite a practical person and tend to get on with things, I'm trying to stay positive and not make a big deal of it(I have 2 kids). I'm putting a brave face on with friends and family as when I've been on the other side of the fence it's hard to know what to say....

 

It's a totally new world and I thought cancer was something that happened to other people but hey it's not...however I do know it's a lot different than being diagnosed many years ago

 

I have read through quite a few of the threads and thanks to all, this looks like a great place to get support and share with people going through the same. 

 

I did call BCC a few days ago with a question and the lady I spoke to couldn't have been more helpful, patient or understanding, I could have stayed on the phone all afternoon only I had to go to work so I would definitely recommend calling with any questions.

familytree
Member

Re: Any support appreciated as newly diagnosed

Hi Rose and sorry you have to join us.. it's horrid isn't it. And as Jill says, a whirlwind of emotions and appointments! I rang my nurse a lot after diagnosis as I was too in shock to ask on the day.. in fact I interrupted the Dr and said I want to leave now. Too much to take in. But when I got home, like you I had a list of questions and the BC nurse was so informative. I'm sure I had an appointment a week later with just the nurse for her to explain everything. I hope you are coping.. it does get so much easier once you have a treatment plan and you get into fighting mode. I hope your prognosis is good. sending love Lorna x
bazza7676
Member

Re: Any support appreciated as newly diagnosed

Hi Blue Rose, we were told it was bc but had to wait two weeks for confirmation which was horrible in itself. Then the official diagnosis, horrible again. My wife had sign for a lumpectomy there and then too. Lumpectomy and all nodes out and now waiting for those results. Told she will require chemo because of her age, we want it done asap. Oh and visits to the fertility clinic too as we are childless at the moment. No matter what you or other people have to do to get through this, trust your docs do it, and beat this vile thing. Plus getting advice from lovely ladies at the same time of course x
Jill1998
Community Champion

Re: Any support appreciated as newly diagnosed

If your appointment is with the surgeon I found that was a really good time to get a lot of my questions answered ,if it's just a standard pre op appointment where they do ECG ,blood tests etc, then I would give breast care nurse a call.They do usually ring you a couple of times so you may get a call anyway.
Blue-rose
Member

Re: Any support appreciated as newly diagnosed

Thank you both.

 

started a list of questions yesterday, not sure if to ring and ask or wait until my pre op appointment on Thursday. 

 

i will check out other thread.

Jill1998
Community Champion

Re: Any support appreciated as newly diagnosed

Hi Blue Rose,sorry you have had to join this club!It is all a bit if a whirlwind at first you can't possibly take it all in, it's like they are speaking a foreign language too!!!I was diagnosed end of May had lumpectomy and I am currently having radiotherapy.There are quite a few of us talking on another thread "Just diagnosed and wanting to talk to people who understand" if you would like to join us,lots of people in similar circumstances some of us a little further on with treatment, should be able to answer most if your questions between us.Jill.
Kiki2
Member

Re: Any support appreciated as newly diagnosed

Sorry to hear of your diagnosis. I know what you mean about not remembering anything at the time! My advice would be to write down all your questions and either ring your breast care nurse to go through them or take your list yo your next appointment, that's what I did, otherwise you constantly have things you meant to ask! Good luck! Xx

Blue-rose
Member

Any support appreciated as newly diagnosed

Hi

 

i was diagnosed with invasive breast cancer on 25/8, I signed consent for a lumpectomy within 40 minutes of being told, it all happens so fast. There's a plan to take a biopsy on lymph nodes, dyes, reconstruction and radiotherapy. I couldn't even start to get my head round it and have only started looking into the treatment today.

 

i couldn't think of a single question at the diagnosis stage, now I have loads and don't know where to start.

 

surgery is booked for 17th, I'm a planner and can cope with stuff if I have control of the plan, this is all if's and but's so I feel completely out of it as I have no control of what's about to happen. I just keep thinking one day at a time but after reading through all the information and side effects, and possiblities its so overwhelming.

 

Any insights, advice is appreciated.