Worried Newbie

I have been lurking in the forums for the past few days, hoping to find answers I’m not going to find I guess.

I visited my GP last Friday having discovered a lump some days earlier. In fact, I think the lump has been there for quite some time (I felt it but discounted it as a ridge) but it became more obvious just recently. I have lost a lot (almost 13 stone) in the past 14 months so my body is playing tricks on me. I have sticky out bones and big swathes of additional skin. All pretty much expected (had gastric surgery last year) and I’m not awaiting surgery to start removing the extra skin.

So, I guess the reason for saying this is that all sorts of weird things have happened with my body in the past year so I think I talked myself out of worrying too much about what may or may not have been a lump.

Until now.

GP has referred me to breast clinic. I have an appointment a week today. The waiting is proving torturous. Like everyone else I’ve read about on here, my brain is racing through all the possibilities (which at times feel more like probabilities) and I’m veering from feeling quite positive (85% chance of it being nothing sinister) to feeling positively wretched about what I might be about to put my family through. My children have been through so much in their short lives (they lost their dad when just 6 and 3 years of age and far too many awful things happened in the years that followed). When you’ve had to tell your children dreadful news before, there is such a feeling of dread about having to do it again. They’re in their late teens now but life still holds many painful memories for them.

They don’t know about this latest potential catastrophe yet, we’re trying to protect them just in case there is nothing to tell. We haven’t told my parents yet - again, I’ve put them through far too much in the past. But it feels like we’re living a lie. My lovely partner (dragon) has been wonderful, calm as ever but clearly very worried. We’re trying not to think too far ahead but it’s hard not to. That’s how I cope with trauma - I plan for all eventualities. Takes the panic out of it. Usually.

So, like anyone waiting to find out what’s happening to them, I’m scared, tired, wrung out and trying to carry on as normal. Not really possible but I’m trying.

And for anyone else on this forum, thank you for sharing your stories, experiences and advice. You have already made a difference to me. I’m not sure how this is all going to play out but I wish everyone well with their own situation and hope that each of finds a way to deal with whatever it is we’re being dealt.

Phoenix

Dear Phoenix,

I am sure you will soon get a lot of support from other forum members.

Please remember you can also contact our Helpline for a “listening ear”, information and support. They are open from 9.00am- 5.00pm on weekdays and 9.00am- 2.00pm on Saturdays. The number is 0808 800 6000

Very best wishes

Janet
BCC facilitator

Hi
I know the waiting is torture, and completely understand about the reasons for telling people if and when you have news.

Didn’t tell my mum about my lump until my diagnosis for all sorts of reasons, although I did tell my children (19 and 21).

Believe me, when I say it is the not knowing that is the worse bit, once you know what you are dealing with, you can deal with it! Sounds blindingly obvious but it’s true.

In the meantime, you are allowed to be worried, confused, terrified and every other emotion you are feeling - it’s natural.

I am thinking of you, and hope and pray that your fears are unfounded, but if not we are here, and although your family has been through a lot, so will they be.

A bit of a ramble, but very difficult to put into words.

SJ xxxx

Hello Phoenix

I’m sorry to hear you’ve got this dreadful worry after all the horrible things that have happened to you.

I agree - the waiting is absolutely the worst bit. There’s a good chance that it’s not malignant, but even if it does turn out to be BC - then you can start doing something about it once you know.

I’m thinking of you and shall be waiting to hear the news.

Take care and let us know what happens. Love Anthi x

Hi Phoenix

I couldn’t log off without sending you a huge hug. This is the toughest part of all, and I think everyone on here completely understands how wretched/frightened/tense this is making you feel. I can’t offer advice, just comfort - the days will pass, and knowledge is most definitely power - I’ll keep all crossed that you get excellent news, and the chances are good for that - if not, at least you will be rid of the awful doubt - and you’ll be able to focus on each ‘next step’ as it arises.

In the meantime, hold your partner, be kind to yourself and know that there are many of us out here who totally get what you’re feeling - just reach out, we’re here.

Sophie xxxxxxxxxxxxx

Except I won’t be here tomorrow… my op day … but I’ll be back soon and look up how you’re doing xxx

I hope your as ok as you can be? Im currently waiting for alumpoetcy to get results for my lump at the moment its inconclusive, so i know how horrible it is waiting…so i wanted to give you a big virtual hug and i hope it goes ok. People on this forum are lovely and are a great support x

Hi there just thought id say hi and let you know that you sound identical to what i felt like in March( didnt associate it with a Lump at all i thought it was a tendon ( ridge) as i had been swimming and thought id pulled a muscle)unfortunately mine turned out to be BC and i have just finished all my treatment surgery ,chemo ,and 20x rads end of OCT. we all understand that waiting is the worst and telling family cos we all want to protect them and not to lay this worry at their door.I was exactly the same i will send you a private message or message me anytime and hope all goes well with youre appt and you dont need to tell them love and Hugs Julie xx

Ladies, thank you so much for your lovely messages. I’m really touched. And Sophie, by the time you read this I hope that your op has gone well and that you are feeling as well as possible.

I’m not known for being the most patient of people and tend to just plough on through things. Having to put the brakes on is so against my normal nature that I’m finding it all worrying but also very aggravating. Not making for a happy or pleasant Phoenix at times, I can tell you! lol

One of the weird things I’ve noticed is that I’ve become really anti towards my right boob. It’s almost as if that because it’s the cause of all things angst and panic that I’ve become completely repulsed by it. Not in a ‘I can’t look at it’ way but in a more internal way - I really feel quite angry at it, like I want to growl at it somehow? Weird huh? I’m not normally this weird, I promise! lol I used to have a similar feeling towards my hanging tummy but now that is about to be removed (unless the news isn’t good on this latest catastrophe and I can’t have the surgery I’ve fought long and hard for) I’m less aggrieved at it. I think all the negativity about that is now redirected to this new offending article!

I am such a weird shape now it’s hard to tell what’s supposed to be there and what’s not. And that’s why I didn’t act immediately when i thought I felt something earlier in the year. Now there is a definite lump, on the outer edge but close to my torso, which appears to be about 2.5 - 3cm across. You can just about see it but then if I lean forward, what’s left of my once much bigger boobs just hang like a pair of old football socks! lol It’s not going to be a pretty sight for those poor people at the hospital next week with all my additional skin, sticking out collar bones and a lump to try to locate. I wonder if they realise what joy I’m about to bring to their day! lol

See, I’m trying to refind my sense of humour. It’s there, albeit intermittently. Just six more days …

Just over 24 hours to go now until we begin to get a picture of what we might be dealing with. Worried, anxious, nervous - partly because I want to get it over with and partly because I feel a bit like I’m stuck on a runaway train. Perhaps a few more days …

Nightmare this isn’t it?

This forum has helped me so much in the past two weeks. I have realised that what I’m feeling is perfectly normal and that in itself is a relief. I’ve also realised that the symptoms each of us experience are so very different. There is no one thing that links each of us other than the fact that we know our bodies are doing something different from the norm and have had the sense to ask for help in finding out what that is. Like so many others have said, the medics need to listen to what we’re saying - we know our bodies better than anyone. If something doesn’t feel right, it needs to be checked out - thoroughly.

So tomorrow I’m going to do just that. And then whatever the outcome, I can at least plan a way forward with the knowledge of exactly what it is rather than all the speculation. Imagination is a terrible thing isn’t it?

Hang in there ladies, whatever your situation. And keep talking on here. You never know who you’re helping by sharing your thoughts.

Phoenix
x

Hi Phoenix
Saw my onc yesterday for 1st time, having lumpectomy 1st dec and then a waiting game for a couple of weeks but said rads maybe chemo…feel so much better that I have got results and a treatment plan…I feel like saying yes, I have got breast cancer, it is treatable, maybe not curable but I CAN beat this…sorry Im ranting but as usual have a head full of things that all want to come out at once…bit like verbal diahhorea…sorry tmi
Keep smiling, sending lots of love and hugs
Alison x

lol@alison

Don’t worry about the verbal D - happens to the best of us!

I think I understand what you’re saying though, once you know what you’re dealing with you can start to move forward. I’m sorry yours wasn’t better news but your positivity is such a great way to tackle this.

I will be thinking of you in the coming weeks and hope that you can keep your chin up whilst you’re ploughing through.

Thank you for the hugs - I am sending some your way too

Phoenix
xxx

Phoenix - the worst of the waiting is almost over, it will all feel easier from here, mentally, at least. Even a tough dx is easier to cope with than nothing to go on at all…

My left breast became BAD BOOB in my mind - and after my op I emailed my friends to let them know I was back home and semi-flat chested, but pointed out that my left breast was trying to kill me, so deserved absolutely no sympathy and not a second thought… so becoming focused on loathing your right breast makes perfect sense to me. Of course, with any luck, there will be nothing terrible going on at all, and then you may have to apologise to your poor innocent boob… I’m sure it will forgive you <grin>. (It may not forgive you for the football sock allusion… that might require a glass of wine. I’d say chocolate, but it sounds from your post like you’ve lost a tremendous amount of weight - so don’t ruin that!!) </grin>

I found my lump after I lost two stone in weight… so I’m eternally grateful that I did finally diet (only got half way to goal before dx, and have eaten rather a lot of Jelly Babies since then, sod it, one thing at a time…)

I’ll be thinking of you, hoping you get brilliant news - but I’ll be here either way - please let us know!

Huge hugs your way… first horrible wait is almost over

Sophie xxxxxxxxxxxxxxx

Hi Phoenix,
I am sending you loads and loads of positive vibes for tomorrow. Losing weight/not losing weight doesn’t really make any difference. We all have lumps and bumps and sometimes we find something that makes us question everything else about our bodies. But losing weight makes a difference to your self esteem and confidence. You have achieved something that you have most probably struggled with all you life - what a determined lady you are. You will cope with whatever tomorrow brings and we will be here to help and support you.
I am sending you a cyber hug:
====================(((((((((((((())))))))))))))))=================

Ladies, thank you so much.

As you might expect, am a bag of nerves this morning but your posts have made me grin.

I can still eat jelly babies - I just have to chew them so many times that they lose their taste before I swallow! lol Does take the pleasure out of it a little to be honest!

Dragon and I are clinging to each other, trying to face this together as we have with so many things in the past few years.

I promise I will come back and let you know what happens. In the meantime, my very best wishes to both of you and thank you xxx

Thinking of you today, keep holding onto each other, it’s times like these when we realise how much our OH’s mean to us xxxxx

Hi all. As promised an update for you.

Have just returned from an entire afternoon at the breast clinic. Had mammogram, ultrasound and fine needle aspiration.

The first thing to say is that none of those things was either painful nor particularly stressful - hope that helps anyone who is about to do the same.

The stressful part is the waiting - again. I was second on the list but still 35mins late seeing the doctor, then everything after that became at least a 20 - 30min wait between events. That’s stressful.

So, mammogram didn’t show anything because it couldn’t get as far back as my lump is.

Ultrasound looked to be showing normal breast tissue - or fat even. (Great isn’t it? Everything seems to come back to my weight - any complaint is either because I’m overweight or because I’ve lost wait!).

It was all looking really good at that point. So went for the fine needle aspiration. That was surprisingly easy and it’s nothing like the knitting needle I was expecting.

Finally went back to the see the consultant who I have to say, may know his stuff but has absolutely no idea about bedside manner or dealing with highly stressed or distressed patients! (Very old school.)

Anyway, he says that the biopsy is showing the tissue has ‘atypical changes’ and he wants to remove the lump. Nothing to worry about. I really had to push him for information as he was so dismissive. Eventually (and with much persuasion) he told me that the current diagnosis is: sequestrated breast segment with atypical changes.

Am trying to find out exactly what that means. A lovely nurse did her best to explain. It looks like the lump is benign but to be absolutely sure they want to remove it and test it properly. This will mean I’m lump free but it also means that it can’t do anything worse.

So I think it’s good news. The only niggling feeling is that they want to get the lump out so that it can’t do anything sinister which suggests there may be something going on or at least it’s thinking about doing something it shouldn’t. He says it may be reacting to hormones, which doesn’t sound so good. Didn’t seem to matter how many times I explained I’d had a hysterectomy, he kept asking when my next period was due! But the key message is that it appears to be nothing to panic about just now. Op is proposed for 21st Dec so we won’t know for certain the results until New Year. Not entirely sure I want this grumpy old man rearranging my cleavage but I guess he knows what he’s doing!

If anyone has heard of this or can comment on the ‘atypical changes’ that would be great.

In the meantime, thank you so so much for all your help and support over the past two weeks. It really has made such a difference, to me and to Dragon

Phoenix xxx

thats realy good news phoenix im so glad its benign for you but understandably it is better to have it removed incase it changes or causes anything in the future and they will also be 100% certain of what they are dealing with because it will be sent away and tested once removed. Good luck with youre lumpectomy op hope all goes well .and now you can celebrate and have a stress free xmas xx take care Julie x