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Just diagnosed

33 REPLIES 33
ChoccieMuffin
Member

Re: Just diagnosed

The Waiting Room is absolutely the worst place to be, because you don't know what you're dealing with. I found waiting for the results after my WLE was the worst time, particularly as I had been expecting results to be in on a particular day and had booked the appointment to see the consultant but the path lab hadn't produced the results so I had to keep waiting.

Good luck to all of you who have surgery booked, I found that the surgery helped me to feel better about the whole thing as at least I knew I'd started dealing with it all.

And keep using the forums, they've been a complete lifeline for me, I hope they will be for you.

Guest user
Not applicable

Re: Just diagnosed

Hi

Sorry I did not reply earlier, I am new to the forum and couldn't find my original post! We seem to be at a similar stage with regards to surgery but you have so much more information than I have. All I have been told is that I have cancer and will have a WLE on 31st March and possible node clearance depending on the results of the ultrasound I had yesterday. I have no idea regarding size of tumour, stage, grade etc. I have been told I will have another appointment 2 weeks after surgery to discuss what further treatment I might have. I agree it is a real roller coaster ride, I have spent the last 2 weeks being totally optimistic, then 5 minutes later bursting into tears when someone is nice to me. I am usually a calm and controlled person butI seem to be the total opposite now. It is nice to know that there are other people out there who feel the same although I wish none of us were having to go through this . Good luck next week x

miniminx
Member

Re: Just diagnosed

Hello Lynny5

So sorry you have had to join us but welcome.

Like you I was diagnosed with bc on 28 Feb when I was sent to Breast Clinic by GP having found a lump two days before. I had the full set of tests done whilst at the clinic and told there and then that I had cancer but would return on 9 March for full results.

Returned and have been told I have an invasive ductal carcinoma, 3cm but do not yet know grade. Will have lumpectomy on 29 March along with Sentinel Lymph Node Biopsy. Return to clinic two weeks later to find out if margins are clear and if so next stage is five months of chemo followed by radiotherapy and of course medication as well. If margins are not clear another bout of surgery or possible mastectomy.

I am so scared I just cannot put it into words so I can totally sympathise with you and know just what you are feeling. I want to be positive and some days I do quite well but others are spent sobbing uncontrollably about how unfair it is and why me. I felt guilty for feeling like this at the beginning but I now understand it is part of the process and do not try to hold it in now just go with the rollercoaster of emotions.

Do keep in touch as we are at a similar stage and keep your head up and smile, we will get through this together.

Best wishes
Tracy xx

Lucy_BCC
Member

Re: Just diagnosed

Hi Lynny5 and welcome to the BCC forums

In addition to the support you will have here please feel free to call our helpline where you can talk to one of our team in confidence on 0808 800 6000, the lines are open 9-5 weekdays and Sat 9-2.

I am posting to a couple of publications which you may find helpful which you can read/order via these links:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cance...

http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/...

Take care
Lucy

Guest user
Not applicable

Re: Just diagnosed

wow wee... so glad this site is up& running again, Annette I've been thinking of you for days (I knew your results would be through around this time) and so lovely to hear your news!!! you've made my Friday night Gin & Tonic taste extra special!!... good for you!!
As you know I'm about 2 weeks behind you had my surgery last Tues WLE and SNB will get results next Weds but am badgering my BCN to check each day for me and phone as I'd like to know asap..but as 'its not normal procedure.' I doubt I'll hear from her...especially as she told me that normally at clinic they are chasing labs for the results whilst women / men are sat in the waiting area!! Sounded a bit chaotic to me but hey ho NHS.. I do however feel am in 'good hands.'
Sorry about your mums friend..its just so frightening..but they seem to have a lot of 'tools' up their sleeve these days.. So pleased for you Annette...hope I'm as lucky!!

ChoccieMuffin
Member

Re: Just diagnosed

Glad I could be of some help. I've found the forums invaluable and want to be able to return the favour, so thank you.

I had WLE and SNB (clear, woohoo!), re-excision and finally clear margins. 13mm Grade 3 HER2+, Er+, Pr+. Have had first FEC and it was absolutely horrible so they're going to change my anti-nausea meds for FEC2. I was told I had a particularly bad reaction and that most people aren't anything like as bad.

I'm a newbie but have had lots of time to look things up and read tons on here and on on Macmillan. Also used wikipedia just for factual bits and pieces about the various drugs, but tried to avoid the less reputable sites. I also asked LOADS of questions on here, made a note of all the questions I wanted to ask the surgeon, BCN and oncologist and generally tried to make myself as informed as I could be. And made lots of notes while I was in with the experts so I could look at them afterwards.

Good luck, and keep us posted.

Guest user
Not applicable

Re: Just diagnosed

ChoccieMuffin wow you certainly know your stuff.
I wish all this was explained to me this simply (i can understand it better now)thank you so much xxx

I am the sort of person that wants to know everything but as my hubby has terminal illness and i am his only carer its just difficult to find the time to research, dont really get much me time.

Yes nodes were not affected which is good news. And yes i will try to look into this chemo stuff just in case .Its all so scary and the waiting is even worse, cant wait to see onc i just want to know whats in store now and when it will start, not only for me but hubby to as i have to arrange care for him too.

Anyway thanks again it really has helped.
Where are you at with your treatment now, if im not being to nosey would like to hear.

Annette

Guest user
Not applicable

Re: Just diagnosed

Hello,

I was diagnosed last week and am booked in for surgery on 31st March. I came across this site by accident just before it closed for a few days but reading some of the older posts has really helped me. Some of them actually made me laugh which made a nice change from crying! Good luck everyone.

ChoccieMuffin
Member

Re: Just diagnosed

There's a lot of good stuff in your post, even if you might not be quite in the right place to cheer just quite yet.

Brilliant news on the clear margins. You can cross off possible mastectomy from your list, so that's got to be a good thing. I know that was one thing I was dreading more than chemo and I was delighted when I also got my clear margins news.

Grade 1 means usually slow growing, not a big difference from normal cells, Grade 2 is more aggressive and Grade 3 is very aggressive. So Grade 2 is also good news. Not fantastic news, but good news all the same. Grade 3 would almost certainly have meant definite chemo, Grade 2 is one of those that may go either way.

Er+ and Pr+ is common, 75% of cancers are hormone-receptive, and that means you also have another weapon against recurrence in Tamoxifen or aromatase inhibitors, so that's also good news. Triple negative ladies tend to get very worried that they don't have the extra weapon.

HER2 negative is brilliant, that means you won't have to have Herceptin, and certainly where I'm being treated if you have to have Herceptin then you DEFINITELY have to have chemo. Yes, still waiting, but Herceptin isn't without potential side-effects including possible heart damage, so HER2- is ALSO good news.

It's the size, 28mm, that makes chemo a possibility, and as yours is a size that is on the cusp of whether it generally gets chemo or not it's something you'll have to discuss with your oncologist. You might find that you are given the choice of whether to have chemo or not, and that's a tough decision, or he or she will recommend one course or the other. There won't be anyone on here who can suggest that one or the other is more likely, so yes, it's the waiting room for you too. If you're the sort of person who wants to know stuff you might want to do a bit of investigating the sorts of chemo that might be given, the SEs, the length of treatment, etc etc. I'm assuming your nodes are clear (and that's THE BEST news!) as if they weren't you'd be certainly up for chemo. Do some investigating about FEC, as from what I've picked up from here that's the most common chemo regime that is used.

You have lots of good news in all of that lot, so when you're ready to think about it from that perspective, there's things you can smile about. Love and hugs to you and your mum, and when you get to talking to her about it, there's lots of reassurance you can give her.

Guest user
Not applicable

Re: Just diagnosed

Results are finally in, got clear margins yeahhhhh
lump was grade 2 whatever that is and 28mm.I am ER+ and PR+ but HER2 was neg. Surgeon has only now mentioned chemo said that i need to discuss this with the onc when i get appointment as he thinks i might have to have it.(waiting room again) Got to have rads and drugs. which i am not that bothered about really, at the moment anyway. Its the chemo thing thats now scaring me, i assumed that i would not have it as it was never mentioned before, oh well can only wait and see.

My poor mums going through it a bit now what with me and now her best friend has been dx with bc last week.

The one good thing is that this site is back up and i can finally have another rant.
Annette

Guest user
Not applicable

Re: Just diagnosed

Hi ChoccieMuffin
Thanks for your quick reply, I have lumpectomy on 18th Feb and got a phone call this morning with appointment for result booked for 15th March, i might phone the bcn to see if i can get them sooner, surely if they are phoning with appointment they must have results back now, so why do i have to wait another 13 days to get them?
Breast Care Nurse did tell me that when i get results i will then be referred to the ONC probably wait another couple of weeks for appointment, then he/she will discuss how many rads i need and when to start tamoxifen etc and when rads will start, so yet more waiting in store.
With regards to the aqueous cream thanks for the info, i am on income support so dont pay for prescriptions anyway (luckily).
Vest tops seem like a good idea i will look into that.
So much to do (wish my hubby could help) i am the main carer for him as he has terminal illness so things really tough at the moment.
Thanks for your help

ChoccieMuffin
Member

Re: Just diagnosed

I'm not quite at that stage yet, have to start and finish chemo before I get rads, but lots of ladies have been talking about getting vest tops with built-in bra support, to avoid bras rubbing on delicate skin. M&S has had good reviews. There are quite a few active threads about rads, to take a browse through those. You'll find that you need to recover from your surgery before your rads starts so you might want to hang on a bit before you go shopping for tops as the shops will have a bigger selection as the "summer" approaches.

You'll be given the creams or a prescription for them at least. Have you had your prescription exemption form yet? If not, get the form from your doctor's surgery reception, fill it in on the spot and get them to get a doctor to sign it and send it off. You'll then get a credit card sized exemption certificate through the post a couple of weeks later, so you won't have to pay for scripts.

If you don't like the aqueous cream you're given you might be able to use other types but always check with the radiographer which creams you should use to make sure the ingredients are safe for you.

I know what you mean about the getting organised thing, there's nothing else you can do while waiting. Do you really have to wait for almost a month? That sounds like a very long time. You could try calling your breast care nurse to check if the results come in any earlier and if they do get her to make you an appointment to get the results a bit earlier. The waiting is pure torture, isn't it, you really have my sympathies, it's just horrible.

Hugs

CM
x

Guest user
Not applicable

Re: Just diagnosed

hi chocciemuffin
Thanks for the info, but so far no ones mentioned me having chemo just rads and tamoxifen, i suppose i will find out when i get results from lumpectomy on 15th, do you know if i will need to get anything for rads people keep mentioning cream to put on does hospital give that to you, i just like to be as organised as i can.
How do you cope with all the waiting its driving me mad, 13 days left to get results then what another wait. Oh well suppose i better get used to it.
Annette

ChoccieMuffin
Member

Re: Just diagnosed

Hi Annette

There's a thread on "tips for starting chemo" (linky, anyone?) which has a long list of things that have been suggested - if you were to buy everything on there you'd need another mortgage! I've stuck to getting Ermintrude the hamster (my wig) and several nice beanie hats. I haven't started chemo yet but when I do I suspect I'll be stocking up on the ginger and nibbly bits to stave off nausea. Even having to get hold of a couple of sports bras to wear after surgery cost a bob or two, and I have no intention of doing any sport that would require me to wear a sports bra!

Guest user
Not applicable

Re: Just diagnosed

hi chocciemuffin
can i just ask what are the bits and bobs you are reffering to i have not been told to get anything, are there things that i should get or need to get? I am finding out new things everyday reading all the leaflets etc but nothing so far on what to get.
Annette

ChoccieMuffin
Member

Re: Just diagnosed

Annette, they're NOT "silly things", they're things that are worrying you, and so will be taken seriously. Money is often a huge worry for people undergoing cancer treatment. Even getting the bits and bobs that will help us cope better during treatment cost money that is extra to what we'd normally be spending and when money's tight, that's a worry.

Good luck with your rads.

Guest user
Not applicable

Re: Just diagnosed

thanks elaine, i will look into it all nice to know there are ways round it, been getting so stressed out. Everybody on this site are so helpfully even with silly things. Thank you all
Annette

elaine_r
Member

Re: Just diagnosed

just sent you a pm

elaine_r
Member

Re: Just diagnosed

There is another way the hospital also provide a car where there are 2 passengers so you can be there and back quicker

Guest user
Not applicable

Re: Just diagnosed

Thanks Elaine and crazy cat lady for your replies, its good to know that they do provide some transport, the only problem i have is that i am the main carer for my hubby and cant leave him alone for too long, and there is'nt anyone around all the time to sit with him. (Not every day for 3 weeks anyway). I was hoping to drive there everyday as i would'nt be gone to long but just cant afford all the petrol. I will ask the onc anyway.
Annette

Guest user
Not applicable

Re: Just diagnosed

Hi,
When you meet with your onc to discuss your rads, ask about transport, the hospital provide transport but they don't like to broadcast it, as it is expensive, but if you are having difficulties with transport or finances then it is there for you, I had transport for my 20 rads, as I don't drive, and the hospital I had to attend wasn't a simple bus ride away, you do have to be ready a few hours before your appt though, as they usually pick up a few patients. Hope this helps, good luck x

Just noticed Elainer's post, saying same thing x

elaine_r
Member

Re: Just diagnosed

The hospital provide you with transport dont worry

Guest user
Not applicable

Re: Just diagnosed

hi all, im back in the waiting room, had lump removed on 18th Feb bit sore and bruised still, now gotta wait for results before i go on any further. I have been told i will need rads and tamoxifen but no idea what to expect. Does anyone know if there is any help for people on income support, i dont know how i am going to pay for travelling expenses for 40 mile round trip everyday to hospital to have rads. I know this might sound a bit silly worrying over money but i can only just about afford general living expenses as it is, im getting so stressed.

Minimunchkins
Member

Re: Just diagnosed

Annette, bless your cotton socks girl - you've got more right than some to rant so don't apologise, just let it out. Simple but heartfelt wishes to you. xxxxx Chris xxxxx

Guest user
Not applicable

Re: Just diagnosed

Dear Annette
I am so sorry you are finding it so difficult after the dx. May be listening to other people's story will ease it. Believe me I felt the same way. I have been looking after my 2 kids and my husband who has been jobless for a long time and has many health problems. I am the sole bread earner in the family. 2 years back my world had shattered after my dx. I didn't know what to do. 2/3 colleagues came home 2 days after my dx and found me crying all along. Everybody was asking me to stay positive and all that but in the beginning no advice or moral support worked for me and I cried everyday. Unfortunately my BCN was quite rude to me many times. My kids were very sad and scared because they had never seen me this upset. Frequently I was going into the shower, standing under the water and scream and cry loudly. My grief seemed uncontrollable to me. But very soon it all started to ease off and I said to myself I have to be brave and have to go through the treatment. Once the tumour was out 2 weeks after my dx, I felt a lot better psychologically and stronger. My skin sparing mx and implant insertion was followed by chemo for 6 months. Although my grief started to come back when I lost my hair but that also became a thing of the past soon. My hair grew back (in curls) soon and looked lot better than before. It took time to recover from chemo but I have been back to work for more than a year now and feel normal and stronger than ever. I am planning to have diep reconstruction in June thus year. Believe me you will be fine and time will pass quickly and very soon the treatment will be over. Medicine has come a long way as far as treatment of BC is concerned. I know it is all very scary at the moment for you but this will pass soon. I see women that had breast cancer and they don't even look like they had cancer in the past. About getting help in the house particularly for your husband let your BCN know. They might be able to arrange some support. You need to concentrate on your treatment and get better. Crying is normal reaction at this time after dx and this will pass. I had requested support from the psychological medicine and they were just brilliant in councelling and supporting through treatment. I hope this helps. Please feel free to ask any question. Best wishes.xxxx

amber32002
Member

Re: Just diagnosed

Aheavens, blimey, what a heck of a situation for you. No wise words but wanted to say that I'm listening...
x

Guest user
Not applicable

Re: Just diagnosed

i am so fed up tonight, think it finally hit me. I cant stop crying now wondering what else is going to be thrown at me. My hubby has a terminal illness and doctors say he has about 6 - 9 months left, i have been caring for him alone for about 2 years now and its not been easy. Now i have been diagnosed with bc, dont know how im going to cope with it all, i feel so alone, scared and angry now, when will my life get better. Sorry for ranting a bit but i need to get it out of my system otherwise i think i will go mad.

Thanks for all you kind comments yesterday.

Annette

Guest user
Not applicable

Re: Just diagnosed

For now sending you a virtual hug xx

Guest user
Not applicable

Re: Just diagnosed

Hi

Sorry you find yourself in this position. It is a scary time and really rocks your world and everything looks very frightening. It takes some time to readjust - when I was first dx I spent ages wandering around the sheep fields shouting 'I have bc', the sheep didn't care but I need to say those words and understand that they were linked to me.

The next few weeks will be tough as they find out the expent of the cancer and formulate the best plan for you. Make use of this site you'll get loads of support and your questions answered.

Take care and I wish you all the best

Reeb x

ChoccieMuffin
Member

Re: Just diagnosed

Hi ahevens, and sorry you've joined. I'm only a little way ahead of you and can totally sympathise with your head going round, it's enough to make you dizzy.

The Waiting Room has to be the worst place on the planet, and we know what you're feeling because we've ALL been there. It gets a little bit better when you know what they're going to do to you, but even then it's still not easy.

If you want to find out more, be careful with googling randomly as there are a lot of sites out there that are single-interest sites with their own agenda and the information can be misleading or downright wrong, so stick to reputable sites like this one, or Cancer Research, or Macmillan.

And give the helpline a ring if you want to ask any questions, or even just to get some help to get your head round the diagnosis.

Guest user
Not applicable

Re: Just diagnosed

Sorry you have also been diagnosed with bc. I had DCIS confirmed and needed 2 ops to get clear margins, now just have radiotherapy to get through when arranged.

I was so well looked after by the surgery team, be assured they will do everything they can to guide you through this scarey time. You should also have a breast care nurse to contact again she is very supportive.

When you get through your op, & go for the results, I didn't go prepared the first time & found all I could do was nod when told I needed 2nd op & the date. Next time round I had a list of questions I needed answered and felt more in control which helped a bit with the stress.

I wish you well on your journey, lots of advice and support on these forums.

Take care & lots of hugs,
Lynne X

Lucy_BCC
Member

Re: Just diagnosed

Hi ahevans

Welcome to the BCC forums

In addition to the support you have here please feel free to call our helpline on 0808 800 6000, the line is open 9-5 weekdays and 9-2 sat.

I am posting a link to the BCC publication which has been designed for anyone newly diagnosed, you can order a copy here:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cance...

Take care
Lucy

Mezzomamma
Member

Re: Just diagnosed

Hello, Ahevans, or is it A H Evans? Believe me you are not the only one who feels scared--we all do. I found that making plans for time off work and arranging for other people to cover some of the voluntary activities I normally do helped me to feel that I was still in control of the situation.

I'm sorry you have to join us here, but this is a very good place to confide your worries, especially if you don't want to burden your nearest and dearest.

When you have a definite treatment plan and dates, you may find that it's a little easier to deal with the very natural anxiety you feel.

Best wishes,

Cheryl

Guest user
Not applicable

Just diagnosed

Hi everyone, i was diagnosed with invasive ductal carcinoma yesterday and my head is in a spin. I have been told that i will have surgery in a couple of weeks to remove the lump and some nodes, and will have radiotherapy after i cant be the only one that feels so scared, its all happened so fast.