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Need someone to talk to...

14 REPLIES 14
ForumMember
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Re: Need someone to talk to...

Anneli - thank you for your post; you & some of the other women on this forum make me feel so humble & completely inspired. I will be so grateful if my lump turns out to be benign; we are reminded daily how precious life is & how we should not worry about the future, but be happy now, in the present.....but will also appreciate that if it is not the outcome I would have hoped for, I can still be positive & will find support from my family & friends & of course , all you lovely ladies here!

Thanks,

Zena xx

Anneli
Member

Re: Need someone to talk to...

Hi Zena,
Well done for getting in touch with your GP today!

I'm 44 and was diagnosed with bc in May 07, after having discovered a lump (well, more like a thickening of tissue than a well defined lump). I was referred as urgent by my GP, but still had to wait about a week, which was way too long anyway. I went through all the same fears and emotions that you are experiencing right now - going from hope to panic and despair and back again, sleepless nights etc. At the breast clinic appointment I had a mammogram, which didn't look suspicious, followed by an ultasound scan - which in turn revealed a very suspicious mass. I then had a biopsy there and then and last I saw a consultant breast surgeon. The surgeon told me that the mass detected by ultrasound was unlikely to be benign - but I still had to wait for a week for the results of the biopsy. It is the waiting game that knocks you for ten!
Anyway - it was subsequently confirmed that I had bc and 4 weeks later I had a lumpectomy and sentinel node biopsy. Having recovered from surgery I had chemotherapy followed by more surgery (axillary node disection) and am now having radiotherapy.

I think this whole experience has helped me become more assertive and I am determined to be actively involved in my treatment. It has given me some sense of control to gain as much knowledge about this disease and the different treatments, as possible. I frequently challenge doctors and nurses and try to make sure that I understand their professional assessments and judgements - so that I can make informed decisions about my treatment.

As your GP has probably told you already, the vast majority of breast lumps and bumps turn out to be benign conditions, but you are right in asking how anyone can know - well, nobody can tell for sure until the pathologist has looked at the tissue under the microscope. The challenge is not to worry yourself sick whilst you are waiting for appointments / results. I have read that it takes about 9 years for bc to develop into a palpable size - so even in the worst case scenario a few weeks of waiting before diagnosis / treatment is not really going to make a lot of difference in terms of higher risk or outcome etc. But of course, everyone wants to have the good news confirmed - that there is no bc and nothing to worry about - as soon as possible, so you can get out of the horrible state of uncertainty.

Zena, I hope and pray that you wont be joining our little club here - the club none of us really wants to be members of..... but rest assurred, if you do need to join the gang, the support and advice you will get from all the wonderful girls and guys on this forum will be amazing. Also hope your little one recovers well from his chicken pox!

Hugs
Anneli

ForumMember
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Re: Need someone to talk to...

Hi everyone,

Just thought I let you know how I got on today ....

I contacted my local surgery today ( who couldn't have been more helpful) & they were very surprised that the Hospital had said there was a minimum 4 week wait. My GP confirmed that he had faxed my referal last Tuesday with his clinical opinion after examining me. He said it is the Hospital who then prioritise appointments & he was disappointed that I would have to wait for so long, but understood my decision for the refereal to the Bupa Hospital, which he was happy to do for me.

He tried to reassure me that although he hesitated to predict outcomes, he thought I would be ok, that maybe it was a cyst. But how can he know? I do feel calmer today; I think I am just hoping for the best but preparing for the worst.... bit pessimistic I know. I keep thinking " why me" , but then " why not me"?

Worrying about this lump has been exhuasting and I feel drained this week; fell asleep on the sofa this afternoon - unheard off for me!
I do feel better for speaking to my GP, ( hope that isn't too naive of me ?) so ... I am going to be more positive about this & try to make the time pass quickly until the 19th.

Juliet - I have been thinking of you today....
Cathy & Anneli - thanks for your advice - gave me the courage to pick up the phone. Where are you both with all this ??
Lucy - have you heard anything yet?

Zena x

ForumMember
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Re: Need someone to talk to...

Thanks so much for all your advice everyone. I phoned my local Bupa Hospital who usually run a Breast Clinic once a week but the Consultant isn't working there weekdays during March. ( ever feel like things are conspiring against you?? Just one sleepless night is one too many, when you just want to enjoy & get on with your life.) Due to the demand they are holding a Clinic on March 19th which I am booked into. I don't have insurance & don't care how much it costs as long as it means I am seen sooner. I'm going to call & speak to my GP tomorrow though.

Cathy & Juliet- you did make me smile, as I am constantly feeling my breast too! It's good to be in touch with you all, as it has stopped me picking up the phone & burdening my sister... not that I want to burden you all, as you all have enough on your plate ....but it really helps when others share your fears & thoughts. My husband is away with work for a few days too. Anyway, I'm off to bed now after settling my youngest son who has just got Chicken Pox, bless him , he's covered in 'em.
Thanks again for all your support & advice.

Zena x

ForumMember
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Re: Need someone to talk to...

To Juliet

I must agree, once you have found a lump, you can't stop feeling for it. I swear I can find several new lumps each day if I try!!! and the original lump feels so much bigger each time you feel for it. It is a dreadful time, waiting for results. I can only pass on what someone said to me - don't try to cross too many bridges. Easier said than done.
Cathy
x

jtr69
Member

Re: Need someone to talk to...

Hi Zena,

I would agree with everyone that you should ask your doctor why you have not been referred as urgent. I was and at first that terrified me thinking it was bad but looked up on the net and as said above its the new guidelines. Ive only had to wait 8 days for my apt and I can tell you thats long enough! I really dont know about lump sizes.. mine is about 3cm and deep in and an odd shape sort of oblong I guess. I tell you I have never in my life felt my breast so much.. 🙂 I keep checking is the lump still there, has it changed, or what.

I really hope that you get your appointment soon! thinking of you

Juliet x

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Re: Need someone to talk to...

Hi Zena

You could have the tests done privately, if you have insurance. If not, do get your husband to keep on at the GP. It is true about a squeaky gate always get the oil. I know that no-one wants to be seen as a nuisance, but it is you that has to wait, not your GP, so get nagging. I am a clinician within a big NHS hospital and I am only too aware that the patients who are politely persistent (not rude or obnoxious) do get attention quicker. Yes, you could argue that this is wrong, but unfortunately, this is life. You have a right to a 14 day referral if a lump is found, so insist on one. The hospital must meet its targets. Let me know how you get on.

Cathy
X

Anneli
Member

Re: Need someone to talk to...

Hi Zena,
Under the NICE guidelines for improving outcomes in breast cancer (you can google this) women over 30 with a palpable lump should be referred as an urgent (= breast clinic appointment within 2 weeks) referral. As Lucy already said, this is a government target. I suggest you check with your GP whether he made an urgent referral - and if your local NHS is unable to arrange an early appointment, then ask if they are willing to pay for you to be seen privately. And remember to ask for replies in writing.

Best wishes.
Anneli

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Re: Need someone to talk to...

Thanks Lucy & Kathy; it really helps having this "lifeline" . I'll chase things up tomorrow; my husband has suggested I find out about having the tests done privately to see if that speeds it up any.

ForumMember
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Re: Need someone to talk to...

Thank you Juliet. It's good to know I'm not the only one going out of my mind. My lump is only small; about the size of a frozen pea, so I'm hoping that's a good sign...although today it feels more like a tadpole shape!

I really hope it's good news for you tomorrow; let us know how you get on.
Zena

Lulabel
Member

Re: Need someone to talk to...

hi Zena,
I too am in exactly the same position, I was in pieces yesterday and had to come home from work - I had been promised an appointment within 2 weeks, but first they lost the fax, and now it seems that won't happen as there is a back-log - although I was told the hospital are trying to set up an alternative clinic as there are 5 women in the same situation as me. I know exactly how you feel. I keep trying to tell myself to be positive as approx 90% of these lumps are nothing to worry about, but as you know well - this is easier said than done. I have found this site so helpful, and the women here are so kind and supportive. I am determined to keep hassling the hospital until they get me that appointment.

I was under the impression that if a lump is discovered, you would be referred within 2 weeks as this is the government's target. It might be worth chatting to you GP and asking why he thought it was only a routine referral.

very best wishes
Lucy

ForumMember
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Re: Need someone to talk to...

Hi Zena

This is a horrible situation for you; the waiting. Usually, urgent referrals made by the GP mean that patients should be seen within 14 days, so maybe your GP doesn't think that you are urgent. You can always ring the surgery to hurry things along because of the anxiety of waiting. Please remember that most lumps are benign in younger women and even if they are found to be malignant, most are very treatable nowadays. Try not to panic, but don't be afraid to pester your GP to ensure that the referral has been made and suggest if this particular hospital is so busy, that they refer you elsewhere?

Cathy
x

jtr69
Member

Re: Need someone to talk to...

Hi Zena,

Just wanted to say hello. Im 38 and found a lump just a few weeks ago. I know how awful the waiting is so am thinking of you. I have my apointment at the clinic tomorrow am very nervous but just want it to be over now. Almost there...

I hope you get your appointment soon

Take care
Juliet

Lucy_BCC
Member

Re: Need someone to talk to...

Dear Zena

Welcome to the discussion forums, while you are waiting for the forum users to reply you may find a Breast Cancer Care publication Referral to a breast clinic of help, it can either be downloaded from the website via the link http://www.breastcancercare.org.uk/docs/referral_07_0.pdf or from the helpline on 0808 800 6000 Monday - Friday, 9am - 5pmSaturday, 9am - 2pm.

Kind regards
Katie

ForumMember
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Need someone to talk to...

Hello,

I'm 40 yrs old & found a lump in my right breast over a week ago. I check myself only occassionally, but on this particular day I instictively felt I should look for a lump & found one. The initial shock was awful but I felt quite calm & got an appointment to see my GP a week ago. He felt the lump too & said he would refer me for a mammogram, needle & ultrasound. Told me it " was business as usual" for me & to try & not worry as he thought it would be ok. ( how can he tell??!!) I told my husband who was devastated, but very supportive.He now refuses to contemplate that it is anything other that a cyst that needs draining. I think he is terrrified of any other outcome.
In was told by my local hospital that the wait for my routine referral was a minimum of 4 weeks as they are backed up .( does a routine refereal mean that it isn't bc?) I have read all the threads on here & totally agree that this waiting is emotional turmoil. One minute I am fine; keeping myself busy & beliveing that it couldn't possibley happen to me, the next I am in tears or hugging my children too tightly & reaching for the wine bottle.
It is so difficult not to worry - I know the chances are that it will be ok, but sometimes I wish I had never found the lump as I hate the "limbo" I feel in now.
We haven't told anyone else , as I don't want my family to worry. We lost my Dad to stomach cancer last April, which was horrendous for him & Mum died 5 yrs ago after spending 5 miserable years in a nursing home following a massive stroke. My family have seen & been through so much, that I couldn't bare to put them through anything else, but I really miss talking to my sister who I usually share everything with. I know it would make me feel better , but it wouldn't be fair for me to put that worry onto her. After all it could turn out to be nothing sinister. I feel lonely, paranoid & silly - it's probabaly nothing, but until you know for sure you can't stop thinking about it. I always imagined that if I ever did find a lump I would be very mature & sensible about it ... how wrong can you be ?!
Apologies for the long post...thanks for listening/ reading.
My best wishes to everyone waiting for appointments & test results.
Zena