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Life-limiting illness

What do I need to ask if I'm told the worst?

14 replies

ratherworriednow · 24/11/2015 14:16

Apologies if this is the wrong place to post as I'm praying I will be told all is ok, but I thought this is where those of your with experience of breast cancer will be.

I have a clinic appointment this week after noticing one of my nipples is more inverted than the other and having one-sided breast pain that hasn't gone away. The pain (more like a throbbing) has been a coming and going since having dd1, and used to be pre-menstrual but had subsided post-menopause, although tended to come back sometimes if I'd had alcohol to drink the night before.

After a shitty few years, things were just getting on track and I'm due to go on an extended trip-of-a-lifetime just after Christmas. I'm hoping of course this isn't going to be a horrible curved ball that life is throwing again.

I'll have a mammogram, ultrasound and see a consultant at the appointment.

If I'm told there is a problem, what do I need to ask next please?

thank you for any advice - I'm very worried, as my (changed) username suggests.

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Lilymaid · 24/11/2015 14:29

Whoa! Steady on! It is excellent that you have got an appointment with the breast clinic. As you probably already know, 9 out of 10 referrals turn out to be for something benign. But if you are in the 1 out of 10 where there is something malignant you'll be given a treatment plan which could be virtually any combination of radiotherapy/chemotherapy/hormone treatment/surgery. The treatments aren't pleasant, but are all doable (I've worked through chemo).
And, as one of the posters on the Tamoxigang thread always points out ... you can't die of breast cancer itself, the cancer would have to spread ... and even then there are loads of treatments available.
In the mean while, don't go to Dr Google which is full of out of date statistics, but do have a look at reputable websites such as Breast Cancer Care where you will find useful information.

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ratherworriednow · 24/11/2015 16:21

Thanks. Because of my impending overseas trip, I booked the clinic privately. If it is bad news, I would have to think hard about whether I could take the holiday at all (a curtailed version would be possible).

I know I am racing ahead, but I am the sort of person who deals with problems by trying to be as informed as I can be.

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ratherworriednow · 24/11/2015 16:28

You have reassured me by the way, that 1 in 10 statistic is good to hear, and knowing that outcomes are often positive these days.

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DinoSnores · 24/11/2015 16:34

The other thing to remember that you should you get bad news that you will have plenty of opportunities in future appointments to ask questions and/or to call the Specialist Nurse to ask questions.

Different people react differently. Some people want to know everything, some want to know as little as possible. Both reactions and those in between are completely fine. There is very little that you need to know there and then and you can always ask more or ask to be told less. Your doctors and nurses should be guided by you.

That said, as lily said, there is only about a 10% pick up rate of cancer at the breast lump clinic, and breast pain is an unusual presentation of breast cancer, so the chances really, really are that all is well.

Another thing to think about, please say that you booked your holiday insurance before this. If, on the off chance that something was found, the holiday insurance should hopefully cover cancellation as advised by a doctor.

Hope all is well.

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ratherworriednow · 24/11/2015 16:57

Yes, the insurance is fine. So, financially all ok. Thank you so much for your reassurance. It's the nipple anomaly (very slight) that concerns me, plus the GP said that breast was lumpier than the other - not something I can detect, even now. Both my breasts have been lumpier for a few years, but I am in my mid-50's and thought that was normal.

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TheoriginalLEM · 24/11/2015 17:04

The fact you are post menopause is a good thing i think.

My friend had breast cancer and her feet did not touch the ground in terms of the treatment being started etc, its not something you want to put off. She had a really shit year, i wont lie, but now she is all clear and its all a horrible memory. So even if you do get bad news (which statistically you are unlikely to) it is treatable. But i am in the camp with the other posters who say that is is very unlikely to be bad.

Its shit waiting though, i had a scare last year at the same time as my friend, climbing the walls doesnt begin to describe it. Luckly for me i was in the 9/10 whose breast issues were benign.

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ratherworriednow · 24/11/2015 17:09

Lem - would you mind telling me what diagnosistics you had, and the timescales? If the ultrasound and mammogram show something, presumably a biopsy would be next? How long did it all take? I would have to go nhs for anything more than the clinic as I don't have health insurance for cancer tests.

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TheoriginalLEM · 24/11/2015 17:31

I was on the NHS, i was totally freaking out as i suffer from anxiety and i was seen by cancellation in less than a week. For any breast lump the target is to be seen within two weeks.

My initial appointment was with a consultant - i had a lump which i think they pretty much new was a cyst/necrotic fat after an injury to my breast. They did a very thorough exam and i was sent for a mamogram and ultrasound that morning. At the ultrasound i was told that i had a cyst and they drained it there and then. Clear fluid drained from the cyst and the history suggested no need for biopsy so no biopsy done. Back to the Consultant who told me to go back if i was worried at all. I was, as the lump was still there but it turned out to be necrotic (dead - nice) fat after the injury which has now been completely reabsorbed. So all results on the same day, no waiting - thank the lord for small mercies!!

They do both ultrasound and mammogram because cysts i dont think show on mamogram. Some cysts can cause nipple inversion, mine didn't.

My friend didn't receive good news but was also told on the day that it was very likely to be cancer and of course they took a biopsy to confirm this. Because they were sure, the bandwagon was set up immediately to get her further tests and appointments with the relevant consultants for treatment plan.

Hope you get seen soon and your mind put at rest. Incedentally i had painful breasts in the past and was referred to the breast clinic, however they only did an physical exam, no further tests required, breast pain is very unlikely to be cancer. Cancer is a sneaky bastard and is able to sit there doing its thing because it doesn't hurt.

We are all different, so its just a waiting game sadly - cammomile tea and diazepam got me thorugh that week :)

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ratherworriednow · 24/11/2015 17:46

Thanks. I will update when I have news later this week - will keep busy until then I think.

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ratherworriednow · 26/11/2015 18:34

I had the tests earlier today - all ok, thank goodness. Just normal post-menopausal changes in my breasts, with one behaving slightly differently to the other. The medics told me I had done the right thing getting it checked as even tiny changes can sometimes signal breast cancer.

They said 90 per cent-plus of women they see have nothing to worry about.

Thanks for your reassurance here.

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DinoSnores · 26/11/2015 21:12

Great. Enjoy your holiday!

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HumphreyCobblers · 26/11/2015 21:18

That is great news. I do hope you have a lovely holiday now, to recover from the anxiety.

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TheoriginalLEM · 26/11/2015 21:44

So pleased for you xx

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MrsEricBana · 26/11/2015 21:50

Oh what a relief. Really pleased.

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