I have just been diagnosed with stage 4 secondary liver cancer. I felt I was in free fall whe I was told a few ago. I want to run but I can't.  We are a member of a club we do not want to be in and yet more that a third of people will get cancer. It's terrifying. I'm finding hard it to be the sick one too. I'm the fixer and doer in my family and I can't get used to not being that person any more. 

I wish you good luck with treatment. I also find Maggie's centre invaluable for counseling at the moment they have save me a few times ️

Hello 747, my heart goes out to you, I can feel the free fall you are feeling. Thank you for taking the time to write to me. I wish you the strength to bear this without such anguish and hope you find the support you need. x

Hi Girls, 

Sam, the appointment in April will be the first time I have seen anyone since I decided to start taking the Letrozole. I only saw my BC nurse before that when she drained my seroma. In fact for a long time the only professional I saw was the physio, then she referred me to the lymphoedema nurse. The swelling in part is lymphoedema which won't be going anywhere, the other swelling is probably fluid build up that should eventually reabsorb but I'm not going to hold my breath. I don't like the fact that it has started hurting, last night I could feel it when I was trying to sleep. I'm hoping the nurse will be able to offer me some advice apart from learn to live with it. 

I'm sorry you are struggling with your arm, I was really lucky in that respect, I could move freely from the start, even after the second op it was ok.
Did you learn anything new at your meeting today? Hope it was all good news.

Caroline, I'm really glad you are getting out and about, Iceland wouldn't have been my first choice to visit in February but a girly weekend sounds great! My son is going to Lanzarote on Saturday, I hope the only Corona he comes across is beer! I should think Tenerife will be fine by April.. 

Christine xxx

Hi both

I am turning into Christine!  Firstly, my arm annoyance is a seroma (mobility is actually really good), told yesterday that they'll leave for now & see what happens, so guess that's what I'll do for now.

Although BCN did tell me things re maintenance of wounds (as she removed dressings, horrible sensation) it was after the news below so didn't get chance to write it down and therefore can't recall anything!  Will be calling her later.  One thing I think she told me was to massage the scar, I must say though I hate touching it as its semi numb and feels horrible in that respect - so that will be yet again another fun, cancer related, thing to do....eugh .

Secondly will need a f******g node clearance.  Good news that they got all the cancer out of RHS but of the 3 nodes removed 3 were cancerous, don't like to do things by half here... And the cancer had busted out of the nodes too (mine is a determined one).

Also they have lost a clip marker thing from the LHS (I really can't understand this but have given up trying to) so will need a mammogram to see where the pesky bl33d3r is and surgeon will need to have another rummage around there to get it out (with any ADH stuff that is where it is)...but where will it be if its not on the mammogram?  Will I find it in a tissue on blowing my nose one day in the future? I do wonder...

So like both of you will be getting cut back open, great!  Maybe I was a little too optimistic about all being well....

Really funny but the surgeon initially tells me I'll need more chemo then at the following meeting the oncologist tells me I won't (as that's only beneficial for TNBC)!  Nice to be totally confused on top of the above news...just as well my brain can still work at times eh?

Anyhoo thirdly (in my mission to become Christine) I will be having biphosphonates too!  Already on the adcal ( which is probably what you're both on too?) as am osteopenic.

Will also be mirroring Caroline -am now a participant in a trial, the Natalee trial, to determine if having another drug alongside Letrozole improves things for those with ER+ BC, its a big trial, 4000 participants worldwide, not sure if this is standard?

And given cr4ppy news above will be having full body CT scan to check that everywhere else appears fine.  Think poor Adrian ( who nearly fell off his seat when they said about the nodes) will be writing to whoever to get me a full body scan every week for ever!

Started on hormone tablets, letrozole, yesterday too, am sure one of you suggested taking it in the evening so that's what I did yesterday... let's see how we get on with that.

Also, as advised by Christine (I'm amazed that I do actually take things in!) I am also taking the codeine pills for night time, sleep is still quite p4nts re seroma and night sweats (great combo) but I think is getting better (??).

So annoyed on several fronts (time for ranting part...)

- I was due to get a frozen section (to examine biopsied nodes during mastectomy) but didn't as the hospital isn't sufficiently set up to do...this would have saved not only my annoyance but so much NHS cost too

- radiation delayed by a month

- getting back on bike/to gym delayed 

- need to re-arrange prosthesis fitting

- will be incapacitated for even longer and incapable of doing things I want to do in house, driving etc.

- got to go back to physio for some reason or other (maybe to make sure I don't use new op as an excuse to slack off??)

And the fact that its raining again...not helping the only activity I can do for the next X months!!

So feeling quite p1**ed off but will take all in stride and hope in the meantime that my challenges are not overtaken by Coronavirus!!  Keep thinking of you Caroline each time they show people from your hotel, on the plus side by the time you get there it will have never been so clean.  I need a holiday even more now!

So all I need to do is turn the cats into shelties and I am Christine no. 2!!

Christine - did you feel the same after op no 2 as you did post op no 1, I am hoping that as its not quite as involved that you're able to do more sooner (or am I kidding myself), mind you with your kids you probably never got the opportunity to find out??  Looking back at your posts it seems to be more painful, unlike you the plan is to have no drain (I produced very little last time).  

Caroline - just reading through old notes and would be interested to know what you used, if anything, on your chest re creams to prevent them getting sore, I want to do all I can as am susceptible to sun burn (not sure if that's actually relevant but in my head it is!).

Hope you're both well and consider myself really lucky to have you & your advice.

Sam X

Sam, I just wrote a long message in response to yours and right at the end something happened, it all went blue and the next time I touched a key it all disappeared,  I will try again later.  In the meantime don't worry, the lymph node clearance was a bit more painful but not unbearable. Important - get all and any dental work done that you might need before starting the bisphosphonates- just had a conversation about it with my dentist who agrees that the 1% extra chance of my being alive in ten years is not worth it for me, but you are still young enough to get more benefit from taking them. 

Christine x

Oh Sam!! 
 

That's proper pants!! You would of thought that the chemo would have wiped out any cancer!! So, was the cancer in your sentinel nodes and you have now got to have an anxillery node clearance?  I was lucky enough that my hospital could check my nodes during my op and would have done a clearance there and then if needed. But hopefully the scan will show it hasn't spread anywhere else! And let's hope that no more chemo is needed. 
After my first and second op I used bio oil gel on my scar. It worked really well and my scar looks brilliant now, compared to initially. I used Aveeno cream when I had radiotherapy. I used to put it on in the morning and then again at night. My skin didn't get sore at all, but I've always been a bit of a sun worshipper - although never topless!  It did change colour but not till after the radiotherapy had finished. 
You are a tough cookie and we will help get you through this. I'm not one for praying but do believe that positivity works wonders so I will be sending lots your way. 

xxxx
 

Hi, I hope that you don't mind me contacting you, it has nothing to do with breast cancer, although I did have a scare last summer which turned out to be fine.  I just wondered how your friend with the nose cancer is.  I have had one sided congestion and bleeding fro a long time now but thought nothing of it, anyway I saw my GP on Tuesday who examined my nose and said that it need lookinng at sooner than later.  I have an urgent referral to ENT consultant on Monday.  I am literally going mad with worry and as nasal cancer is so rare, there are no posts about it.  One kind lady did respond to my post, but there is nothing else.  I would be so  grateful if you could give me some information about your friend.

Many thanks

Lyn

Hi Lyn,

My friend is doing ok. The cancer she has is a slow growing one but is starting to now press on one of the arteries in her face. She is having a stent fitted soon, to keep the artery open until they operate, in April to remove it. She is now under a different hospital, that is more specialised as the local hospital weren't knowledgable to deal with it. She is very unbeat and positive. And amazing  . Initially, like you she was full of dread and was convinced it had spread but once the scans had been done and they could confirm everything, she is a lot calmer now.

Caroline xx

Thank you for coming back to me Caroline, do you know how it started, what tests they did and what type of cancer it is?  I have read terrible stories about disfigurment after surgery.  Why has she had to wait so long for the operation?  

Lyn 

Sam,  

I'll try again to give you my reflections on your latest news. I was in full flow yesterday until it disappeared right at the end as I was re reading it to see it made sense. Perhaps the internet gods thought it was rubbish!

First, care of wound, I did nothing excep wash and peel off dried glue. I was never told to massage it, let alone what to use. My scar is like a very big bra underwire, going from my armpit to the centre of my chest. It did heal very well and they were mostly dealing with my rapid fill drains, then when they were gone, the rapid fill non boob!

Secondly,  Your physiotherapist will be your friend over the next few weeks. She will show you what to do to avoid the seroma in your arm turning into lymphoedema and if you get cording, as I did, she will relieve it for you. My physio was the only professional I saw for a few weeks and it was she who called the BCN about draining my seroma, then later she referred me to the lymphoedema nurse.

Thirdly, the dreaded lymph node clearance  My experience of this was tainted by the feeling it was unnecessary, but even from that viewpoint it wasn't too bad.  The exercises were easy enough and my range of movement was pretty good right from the start, although the operation is more invasive than the mastectomy because the surgeon had to go in and dig out rather than just lopping off.  Your underarm will be more painful for the first week or so. You may get cording, which in my case, felt like a string going from my armpit to my wrist that didn't like being stretched. It was quite a sharp but short lived pain when I stretched it further than it liked. The physiotherapist massaged it, very gently, and after two weeks it was completely gone. I had what she called over sensitivity on the underside of my upper arm which felt like it was being scraped with rough sandpaper and she showed me how to teach it to ignore the feeling. The sensation or lack of it, in the armpit is quite disconcerting and seems to be permanent. It still feels alien to look in the mirror and see that I am washing myself while not feeling anything  I feel I need to be really careful when drying the area. Putting on deodorant feels weird!

Fourthly, delay in radiation for a month - be grateful for a month of relative normality I was really glad of that few weeks I took off before agreeing to take the Letrozole. If my flipping knee hadn't been so painful I would have had a great time.

Getting back to bike and gym - needn't be delayed too much as long as you work within your new limitations  Don't forget my limitations were pandering to the kids' fears.

Need to rearrange prosthesis fitting - no biggie, I'm still waiting for mine  Dangly DD seems to be getting droopier and dangler but I can't comfortably wear a bra because of the non boob, so I only bother if I'm going to be seen by anyone other than family and dogs/dog walkers. I'm wearing vests to hold DDD close so it doesn't rebel and try to hit me in the eye. Think I would go for a second mastectomy but the kids don't want me to put them through the trauma again. They really are worry warts, I don't know where they get it from.

Incapacity - the anticipation is worse than the reality  I was driving as soon as the drain had gone, and you won't have one to worry about! If you can comfortably move your arm and turn your head you'll be fine.

Raining - invest in a good waterproof coat and wellies. There's no such thing as bad weather, just the wrong clothes! Walking is recommended and so good for you! Preaching over!

Fifthly, Letrozole, I feel a bit of a fool after making so much fuss about the cost/benefits of taking Letrozole because I have been very lucky. I get a few hot flushes, but no night sweats. I felt a bit nauseous the first week or two and went off my food for about six weeks, lost over half a stone without trying but I have nearly gained my appetite back and have gained a couple of pounds back.

Bisphosphonates, as you already osteopenic you are someone who probably needs them, see my last post. Have you done the NHS PREDICT thing to see what your prognosis would be with and without them?  In my case it was 1% extra chance of being alive after ten years, and given my age and Corona viruses I'm prepared to take my chances without them.
 

I think that covers everything.  Like you, I'm a cockeyed optimist, which everyone tells me is the best way to be, but there were times when I felt totally peed off and chocolate helped! I even finished off the Bailey's from last Christmas, one week!  You are going to find this perishing disease fills your head more, now, but as you can see from both Caroline and myself, there is a future  You've already had it tougher than me because I escaped the worst treatments, and it may be you have more to come but it will pass. 

Good luck with your scan, keep your pecker up but if you feel the need to rant and rage you know where we are!

love

Christine xxx

Hi Lyn,

She has polymorphous ademocarcinoma. It started when she decided to get her hearing tested. They found her ear drum was not quite right. Sent her to GP, who referred her to hospital. Think initially they did an endoscopy which they did find a lump but weren't concerned - didn't even give her the results! She went back 6 months later where they did the endoscopy again and found it had grown, then she got told they thought it was cancer. Was sent off for lots of scans which confirmed it. Think they did a biopsy too. They attempted to remove it through the roof of her mouth, in August but when she went back for a check up and they did another biopsy, they found it was still there. They then referred her to a London hospital as they had more specialist drs. They have said that they will have to go in through her face. They said because the cancer is very slow growing, there wasn't too much need to rush it through. Initially she was going to have it done in June, after her holiday but they have now bought it forward as its pressing on the artery.

cx

Christine, this has made me chuckle while reading. Sam, we are your wing men, so you have us to back you up xx

Christine, this has made me chuckle while reading. Sam, we are your wing men, so you have us to back you up xx