the waiting for treatment is so hard!

The Macmillan nurse told me over the phone 2 hrs ago that I’ve primary breast cancer with secondaries in my lymph nodes in my armpit.I keep thinking this isn’t real!! I had a recall from breast screening at the end of August.They said all was okay. My armpit started getting uncomfortable and I found a small lump. It took constant ‘hassling’ of doc over 2months and still they said it was nothing - they referred me to local surgeon for 2nd week December.It was getting bigger and very uncomfortable so I took my savings and had a private biopsy last week and things have moved fast. The surgeon warned me he thought it was not good. Now, back on NHS I have to wait for an MRI scan -about 3 weeks if I’m lucky. If there’s cancer there - why don’t they just take everything away? the armpit lump is now 3cm…I am worried about how far it could spread in this waiting time. How does everyone else cope? I’m finding middle of the night times are scary! I live alone - keeping positive and etc …but every so often I get everwhelmed with panic!!

Hi suebeth

I am sorry to hear of your recent diagnosis, but would like to welcome you to the Forums. I am sure you will receive lots of helpful advice and support from our users.

Below is a link to a Breast Cancer Care publication Resources Pack which can be ordered on line, it is filled with information to help you better understand your diagnosis, test results and the various treatments available.

breastcancercare.org.uk//content.php?page_id=7514

You also sound to be very worried about the wait for the tretment to start, this is always a very difficult time and I think it might be a really good idea in your situation to give our helpline a ring.

They are on 0808 800 6000 and open Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm

Our helpline is a free and confidential service. It is run by specially trained nurses, who can help you through this difficult time, listen to your concerns and offer advice and support.

I do hope you find this information of some help.

Kind regards.

Katie
Moderator
Breast Cancer Care

Hi Suebeth,

I am sorry you had to join us here but we know how hard this is for you.
My situation is very similar to yours, i was diagnosed a month ago and started chemo a week later to shrink the tumours. I also have large lump in lymph nodes under the armpit. plus one in the left breast.

I know what you mean by the night times, i felt the same way but got support from here and another forum.
Did they give you any indication of a treatment plan for you? I had CT scan and bone scan after chemo had started.

Once treatment started for me i felt more in control but the time in between can be very worrying for us.
Please keep in touch and let us know how you get on.

Val
xx

thank so much for your kind replies.

I will phone the helpline tomorrow and thank you Val for teling me what is happening for you. I’m glad your tumours shrunk - it sounds like you have a good oncologist as he got things started so quickly for you. I hope you kept well through the chemo and are feeling better.

I have to have an MRI scan on the mainland (I live on a small island) and I’ve been told that will take 2-3 weeks for an appointment to come through, then another week for the results, then they will decide what next.

Time has gone all funny since my biopsy last week - it is flying past = sorting out paperwork, work, animals and foster homes (I’ve cats anda dog) its quite unreal …but maybe that’s just part of the process.

I do feel blessed in lots of ways - a colleague has aggressive MS and another’s husband was diagnosed with Motor Neuron… so I keep telling myself there is a lot to be thankful for.
Then all of a sudden just when I think I’m coping…I get a horrid panicy feeling! But I take solace that you say I’ll feel better once things get started.

Please let me know how things are going with you - it sounds like its been a rollercoaster of a month for you -

Suebethx

Dear Suebeth

I have been where you are and I know life is very difficult for you at the moment. Believe me, it will get easier. You will get lots of support from this Board. There are plenty of us with lymph node involvement. I was misdiagnosed by four years. I never felt a lump in my breast - it was always armpit problems I had. My GPs said it was nothing to worry about on three occasions over a four year period. Some GPs don’t seem to realise that armpit swelling, thickening and lumps could be BC. Eventually when I put myself into the system at 50 my cancer had advanced to 15 of my lymph glands - I’m stage 3b. For over a year I couldn’t sleep properly - it wasn’t the cancer that bothered me, it was the anger for my GP. I used to wake up thinking I had just dreamt the whole situation but on feeling my body I knew it was for real. I found that listening to calming music helped. I also enjoyed having long hot baths by candle light. Try anything that you think will relax you. I also kept a “grateful diary” - I wrote 10 things each day I was grateful about. This can be anything - I’m still breathing, I’m lucky I have good friends, etc etc. I found this quite helpful and when you are in this situation you feel your whole world is falling apart and there is nothing to be grateful about. But there is and you will get through it all.

Keep in touch.

Love

Jeannie

thanks Jeannie,

I’ve calming music on right now! I love the idea of a ‘grateful diary’ - I made a small book on a course recently and that will be the perfect use for it.

You must have seriously lost trust in your GP’s - you are right they don’t realise and it’s such a helpless feeling. I wanted my GP just to say sorry they hadn’t taken it seriously coz they made me feel as if I was being almost neurotic!

I woke up today - knowing I would be getting more info - and for the first few seconds was asking myself ’ Is this real or a nightmare?'…and like you felt the discomfort and knew it was for real.

I don’t understand yet what stage 3b means - but I hope you are getting the right treatment now and that you have a trustworthy team behind you. Please let me know how you are and what is happening with you. Please share any more good tips… I don’t feel I could realx in a bath somehow - can’t seem to sit still for long - this is good though coz its somehow comforting to be with others in the same boat. I’ve just thought of a tip - when I was watering my huge house plant collection my mind was totally on what I was doing.

It is such a releif to talk to people who know where I am - I’m trying to be really bright and cheery with friends - I need them and don’t want them to feel worried about me not coping.(or not call coz it’s hard etc ) It’s exhausting!

I’m off not to hunt out that book and start … Look forward to hearing from you again, I’m so glad I have the internet for this.

suebeth x

oops Jeanie - I am off NOW to hunt out that book for your good idea, suebeth x

Hi again suebeth,

I was just thinking about the panicy feeling you mentioned.

Someone gave me some very good advice on this when i felt the same, that horrid feeling in the pit of your stomach? and palpitations.

When i got that panicy feeling i would lay down on the sofa or bed and try to relax, then take nice deep easy breaths and think about something really nice, like a holiday you really enjoyed or something that has really nice memories and try to remember every detail of it.

This really worked for me many times, i was on anti depressants because i could not cope at the start of this but happily i have not taken one for two weeks and feel i don’t need them any more.

I am only starting my treatment and there may be tough times ahead but just take each day as it comes and enjoy every one of them.

And remember! everyone here will try and support you.

Val
xx

thanks Val - I’m going to try that. It is mind over matter and fear. I think I’m trying hard not to feel how I’m feeling incase I enter one big panic attack and can’t get out…you know like those nightmares that seem to go on for ever… like I’ll start screaming one huge NO! and not stop!!

SInce this whole thing started a couple of months ago I seem to have entered some sort of weird world…this last week with the biopsy and today with the results is odd. I know its real and this is me - but I feel different and not quite myself!

I hope your treatment is going well for you - you didn’t say what was happening just now - has the chemo shrunk your lumps and tumours and what will the next steps be for you?. Its good you feel stronger and proof that your good advice works. Let me know how you are and how things are going for you.

I am so glad you are all out there -
Sue X

Hi,

thanks for asking how i am Suebeth, i only started chemo 2 weeks ago so is too early yet for any shrinkage, after 6 chemo i will be having mastectomy and prob lymph node removal, then radiotherapy.
I have not had the results of my scans yet, seeing oncologist on 8th Nov before next chemo so will prob get them then.
Hang in there Sue, i know it is awful being in limbo before treatment starts but it does get easier, and this forum is a great help.

hugs
Val
x

Hi Val,

Hope the chemo is going well and doing its job and its a good visit on the 8th. It’s a strange journey we have isn’t it? Step by step is the only way I’m thinking.

I found out today that my MRI is on the 7thNov. Everything is moving so fast now - its even scary getting the scan so quickly!! But its step by step so I’m not thinking too far ahead. I’ll get my treatment plan then. The Macmillan nurse here is great - she tells me little bits at a time so I know I’ll have chemo and surgery soon but don’t know in what order.

I’ll still be on the mainland on the 8th so I won’t be able to email. But I’ll be sending good thoughts your way Val and will check when I get back how you are.

You are so right - this forum is a lifeline. Last night I woke several times fighting down panicy feelings and I remembered your tip - so I was back in Verona and Florence - the biggest holiday of my life… and it helped. Thanks -

take care

Sue X

Hi Suebeth. Sorry you have had to join us, but we are all here for you. It is a year since my diagnosis, so all the scared panicky feelings have gone for me, but at the time a friend gave me a lot of puzzle books, and they really helped to keep my mind off things. Apparently it is to do with left and right brain things. It is impossible to worry when you are trying to solve a crossword, or work out which person lives in the red house with the brown dog etc. Give it a try. It is true what Fushia says, it does get easier, especially when you know exactly what you are facing.
Hugs, Heidicat

Hi Suebeth,

I am glad they are getting things moving for you and will soon be starting treatment i am sure.
Don’t worry that the MRI is happening so soon, i had my scans a week after diagnosis along with my first chemo, i was glad to start the the treatment and get on with things. I will be thinking of you too on the 7th and hope you will post on here on your return to let us know how you got on.

I don’t normally post this much on the forum but you sound exactly like i did and feel the need to keep chatting to you.

Take care
Val
x

hi all.
my consultant put urgent on MRI form and i was only having it on other one for precautions. This was at the Fri pm clinic that he told me. On Mon i had phone call to say apt on Tues. I went and was told get results Fri… i am glad it happens quickly but you dont get time to get your head round things do you… i have so much happened since 10th Sept mammogram scan core biopsy lumpectomy sentinel node biopsy MRI scan and results today for a date for mastectomy. In this time i have also delayed things myself due to a weeks holiday in Corfu and a weeks break in gt yarmouth. I dont think things could move any quicker. Perhaps i am lucky living in this area or so i thought but i have a friend in moffat near dumfries who is going through the same but one stage behind me and her treatment is going just as quick. good luck to all. i am getting results today and felt sick all night and have woke up feeling rotten. still off to fireworks display tonight with the family. have a good weekend all. Julie.

Hi folks, its a rollercoaster and thats for sure…

I’ve a puzzle book by my pillow Heidicat :)- along with mags, books, radio, juice,my dog and cats and yes even my knitting!!.. its night time I’m hating just now. The days are so full oranising things and work and cleaning up house etc the hours fly pass and I’m so tired- until I go to bed!. I’ll make sure I pack my puzzle book for hosp. This whole-brain thing is amazing - have you tried the ‘tapping theory’? - I forget the right name but you tap various parts of your face and hand and it helps…I tried it once at the dentist and thought I was being discrete until I realised an eldery gent was observing, then he leaned towards me and quietly started talking to me about the weather…:):slight_smile:

I’m glad you keep chatting Val - I love my friends dearly and they are being so supportive, but somehow we don’t speak the same language anymore - and its a whole new life thats ahead of me and I really value hearing from folk who are a few steps ahead. Its even good to hear that its good to start treatment! And reading the names of the various things somehow helps.

Julie - wow - talk about quick - your head must have been reeling…
but I had to chuckle when you dropped Corfu and Gt Yarmouth and fireworks into the chat - its good to hear that. I hope things went well.
Reading what you wrote reminds me that cancer is only a part of our lives -at the moment everything I do is centred around it! Everything!!

Have a good weekend

Sue

Hi Suebeth,
Just to let you know that the results of my bone and Ct scans were clear and my second chemo went as well as my first one,also the oncologist said both my tumours have shrunk so feeling good right now.
I hope you have good results too and please let us know how you are when you get chance. Thinking of you.
Love
Val

Hi Suebeth, glad you found the puzzle book idea helpful. I haven’t tried the tapping thing, but it rings a bell. Let us know when you have dates etc. I quickly lose track of who is going in for what and when.
Hugs Heidicat

great news Val - can’t think of words other than great news! funny thing this cancer - words become terribly inadequate…add a fanfare and bells-- but that still wouldn’t do it …immense quiet relief is probably just an understatement too :wink: How many more chemo do you have to go?

I’d the 2 MRi scans last week …glad I’m not any fatter as its a tight squeeze!! They have found a lump - but the words they use make it sound like an alien on one of those wonderfully bad B&W Bmovies - something to do with ’ outer aspect’ and ‘further out from the (planet) axilla’ but they need a biopsy and somehow that is done with the MRI scanner - I’ll find out how …soon I hope but they’ve sent me home (I live on an island) so I do hope they will be quick. I can feel this nasty secondary getting bigger all the time. I did ask why they couldn’t just take the lymph nodes away as they know its there, but they need to know more about the primary. One of the MAc nurses gliffed me by muttering about the back wall of my breast and bones etc but the other 2 nurses didn’t talk about that. Guess who I ask to talk to? :slight_smile:

I’m thinking a cool head is a great asset in this journey. I was told today that I have ‘a very tough road ahead’ of me by someone who phoned to wish me well…mmm … it is easy to be afraid… and from some of the comments I’ve had - other folks seem to be finding words and language tricky as well…

Did any of you find that you don’t want to know too much at a time? I have stayed away from the internet sites apart from this one. I want to know as much as I can cope with but I don’t know how much that is yet as I dont have the whole picture from the doc. It’s like a step at a time…

Julie I hope things are going well with you and you’ve managed to catch your breath. Have you had your date yet for surgery?

Heidicut, thanks for saying that it gets easier - I think I must still be in shock as I feel everything has changed, then sometimes I feel I can’t quite believe it. I’ve tried using the word cancer as much as I can and that is getting easier - although it still is a shocker as I keep bumping into folks who don’t know and then they get a shock when I say it- so I am extra cheery and make a joke about it… so we can laugh and move on to talk about something else…

Thanks for you out there - it is so good to hear how you are, and I really appreciate the tips and comments and your sharing how you are with me,

thanks and good thoughts sent your way…

SueX

Hi Suebeth

After reading your latest post I wondered if you have a copy of BCC’s Resource pack for the newly diagnosed?

Filled with information to help you better understand your diagnosis, test results and the various treatments available, each unbranded A5 ring binder also contains: key questions to ask healthcare providers and space to make notes, a pen and plastic wallets to store appointment cards, letters, local details, tabbed information sections covering primary breast cancer, treatments, best treatment guidelines and further sources of support.

To order a free copy just follow the link below:

breastcancercare.org.uk//content.php?page_id=7514

Kind regards,
Joe, Moderator

Hi Suebeth,

I know what you mean about not knowing too much, i try to avoid the internet too apart from here and BCpals, i try not to compare my situation with others too much too because this can also lead to problems, we are all different and the treatment affects us differently too.

I have 4 chemo treatments left before my mastectomy, to be honest my chemo has been very easy up to now, no sickness and just a little tired and flue like on second week after treatment.

I hope you hear soon about the next steps for your treatment, believe me that once treatment starts you will feel so much more in control, i was so terrified but now i feel very calm and just want to get on and wade through the treatment with a smile on my face.

Got my head shaved last week as it was falling out big style but even that did not get me down, i love my wig and so does everyone else. I really hope you too can start to feel more relaxed and at ease soon. It is not impossible just difficult.

Love
Val
xx