**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Shrewandroo I had a sore throat caused by thrush with each cycle of tax. Uncomfortable and unpleasant but fluconazole prescription cleared it up.
Nanny, hope all goes well on Thursday and everyone's tests are ok.
Off for my bilateral mastectomy tomorrow but have kept myself too busy to worry. Not. Looking forward to having time to think if the op. Is in the afternoon. Have been having a laugh about it at work as I 've done a competition/fundraiser to guess the weight of my offcuts. Someone suggested 7kg! I'm big but 7 kg seems ridiculous. Surgeon has promised to record the weight and seal it in an envelope for secrecy.

Should be home on Thursday, seems awfully quick to me.

Shrew, I also had the evil sore throat on cycle one of Tax, it was worse than tonsillitis IMO, I did try Difflam which seemed to help a bit, but really I just had to sit it out. Totally grim, you have my utter sympathies. If it's any consolation that was the worst I felt on chemo and it didn't recur on subsequent cycles of Tax.

don'task - huge huge luck and love for tomorrow, I hope it's all over quickly and you're home recovering asap. My op was also in the afternoon, DH made me go on a long walk in the morning which actually was the best thing, so maybe if you feel up to it I you can take your boobs out for a final bit of fresh air. I'll be thinking of you.

Big waves to everyone else, it seems like a lot of people are going through more tests and waiting and scanxiety (we have to get this word in the OED). Nanny, good luck for Thursday

I am pottering along, rubbing cream into my sore rads burns and getting back to 'normal' - it feels like the last 9 months have been a bad dream. Marshy, your long post was really helpful, thank you for being so open. This thread really does seem like home to me, where we all understand the emotional toll. Like a lot of us, friends and family expect me to be back firing on all cylinders, when really I feel on the verge of resigning from work / running away / having a crazy midlife crisis!

Good luck, don't.

I found out the weight of mine and it was nowhere near 7 kilos . I can't imagine anyone walking around happily with that weighing them down!

dontask wishing you all the best with your surgery today.

mrs good luck with your scan.

shrew I didn't have a sore throat, but after sailing through FEC with no major issues, the Tax was tough! I felt like I had been hit by a truck after each cycle. Having said that I did still manage to work (my choice) although I did need a few days off after the last two doses. Hope you find a solution for your sore throat.

Have a good day all xx

Dontask, we will all be thinking about you today and virtually hand holding.

Nanny, thank you, scan at 11, not looking forward to the full bladder bit!

Morning to everyone else.

Lots of luck and good vibes winging their way to don'task and Mrs from me.

shrew the sore throat sounds vile. Hope it eases soon.

Elporto I agree, running away has sometimes seemed like an attractive option. I can remember one sunny morning, when i was in the middle of it all, driving down a deserted motorway on my way to see my daughter and thinking I could just keep going and not come back......Somehow or another I'm still here!

boobz your Italian experience does sound odd and I'm not surprised you're frustrated. Good news about the UK appointments. My nhs treatment has been excellent. I can't imagine my surgeon leaving me with a 50% chance it's malignant and no plan. Re the helpline, i'm sure you would fall within their remit so don't be shy if you think it might help.

Wishing everyone a good day. I'm off out to enjoy the sunshine as it seems we're in for a deluge tomorrow!

All the best dontask, fingers crossed it all goes well

Booz, I'm sorry that you're having so much frustration with your team. I can't answer about how a biopsy can be inconclusive but I can see how different samples could come back with different results. On a mammogram, calcifications appear as little white dots - if a needle manages to suck out one of those dots, then the labs have something to work on. If the needle misses by a mm then it could be drawing out normal healthy tissue.

Now I'm not a medic so I could have it all wrong, but that's how it was explained to me by my surgeon a while back

Elporto, sorry you're not doing so great out there in the real world. I'm not looking forward to the end of my treatment for the exact same reason.

Mrs, good luck with your scan - and with holding a full bladder!

Marshy enjoy the sunshine, it's beautiful here too. Just a shame I have to work albeit from home

I'm feeling a bit down at the moment. Was at the Marsden on Monday for my rads planning session. I know physically it should be easier than chemo but emotionally I think I might find rads hard. I think it's seeing the bald children and obviously ill folks there that will make me face up to the fact that I have/had a serious illness, which as you know isn't something I've really got to grips with even after all this time. Anyway, my 4 weeks of rads start on 13th April so I finally have a date to work towards

Also, I think I mentioned recently that there is a poster on the children's health board who has 5yo triplets just confirmed with cf and a 20 yo daughter also with cf who needed a lung transplant. Well just one week after being taken off the transplant waiting list (because she was too poorly) her DD died at the weekend. My dd had a virus last week leaving her with a really nasty cough. Trying to get her to do her physio this week to clear it has been the usual battle and I just want to shake her and shout at her that I don't want her to die

Such is life dealing with a chronic health condition.

Later today I have to start making a crocodile cake decoration (don't ask!) for her 8th birthday this weekend so that will hopefully take my mind off things off a bit

Thank you ladies, elporto, it is definitely worse than any tonsillitis I've had before! Evil sore throat is right! Feeling a bit better today so fingers crossed the worst is over.....Not sure if I can cope if it happens again, so praying that it was a one off .

Oh minty, I was so sad to read your post and I can't imagine the worry you have about your daughter. You have far too much going on for one person to have to deal with, big bugs from me. I don't know very much about CF but I understand its really nasty thing and you must be very scared for the future, I'm so sorry you're having to deal with this.

With regard to the rads appointments, I had mine at a massive cancer centre in Leeds, with loads of machines and waiting rooms. I think I saw somebody without hair once. It was quite strange, there were a lot of old men who I imagined were having prostate treatment. I found it a bit hard emotionally some days, even cried on the radiographer once, it is a bit bleak. But you will get through it. I know what you mean about not having got to grips with having a serious illness, sometimes I think this is not real life.

My scan was uneventful and I managed to control my pelvic floor. The lovely radiographer could find nothing untoward so I breathed a sigh of relief. It doesn't explain why I had such a horrible period but it means no further testing or interventions in that dept. I'll see my gp next week to discuss what to do next.

Big hugs, not big bugs, flippin iPad!

Thanks mrs. Generally dd keeps really well and does lots of gymnastics and singing/drama and is a complete live wire. To look at her you would never know there was anything wrong. But, if ever she gets a cough my heart tightens and I start worrying. Same if she gets ill, like all children the weight falls off and then we have the worry of getting it back on - a good BMI is essential for someone with cf. Only trouble is she has an anaphylactic allergy to milk as well so we can't fill her up with cheese etc!

But thank you for the hugs, I'll take them any day over more bugs ;)

So pleased to hear your scan went well although as you say doesn't explain why you had such a tough time last week. Yeah to no more tests!

Oh goodness, I had a friend who's daughters also had an anaphylactic allergy to milk too amongst other things. I was taught to use the epipen. They had both grown out of it by secondary school, had careful tests at the hospital and are now both able to eat anything. That alone was scary to manage when they were little.

That's great news mrs so pleased for you. Xx

Fab news mrs!

Minty it must be very tough worrying about your dd. I find everything else much harder to cope with if the dc aren't ok. Hugs for you.

I've had a nice walk in the sunshine and have just bought something tasty and healthy for tea. I went back to slimming world last night and was please to find I'd only put on a pound after 4 weeks of enforced inactivity and comfort eating owing to my sciatica. Back on track now

Hi. A message for Boobz my core biopsy was ambiguous. I started off with mastitis, had ABs and it went away, leaving me with a tiny lump, which was ultra sounded but I was told it was nothing. 6 months later I fell over in the woods and got mastitis again the next day. More ABs, and back to the hospital for an ultra sound, a mammogram and 6 core biopsies. The biopsies were ambiguous, so had to have 5 more done. After this my tiny lump was the size of a satsuma. The mammogram showed nothing, the ultrasound showed denser, normal breast tissue, but the second lot of biopsies showed DCIS, which is a non-invasive cancer. I had a lumpectomy first, which showed the satsuma lump was all DCIS, and that I needed a mx. Which I had in November with a LD flap reconstruction, and I am fine now. Apparently I was a bizarre case and no-one really knew what was going on with me and my lumps. I don't need radio or chemo, so feel a bit of a fraud and at the same time paranoid I'll get DCIS in my other breast and need another mx. Sorry, rambling now, just wanted to let Boobz know she wasn't alone.

Hi endless - that's really really interesting to hear.

Is mx mastectomy?

I have only had one core biopsy so far - you had 11 before they got to a diagnosis? Ok that is starting to make me think the Italians are perhaps being a bit less useless than originally thought!

Hi Boobz, yes mx - mastectomy. I had 11 of those biopsies in 2 sessions - my that needle is more like a gun - and only got the diagnosis after the 2nd session. It floored me - I was expecting to hear it was just lumpy following the mastitis infection. There is no history in my family and I am 39, with 2 kids. My cleavage was my thing - it was my asset which I liked (am short, no waist, not a looker etc etc) and I was terrified it would be taken away. And it was, but replaced pretty instantly. In clothes now you would never know, unless I show you my party trick of flexing my new boob as it is all made from back muscle!

I know it's really scary, but you do come out the other side. Not everyone presents symptoms the same way and I guess cancer cells do what they like and don't follow any rules, so it may take some time to reach a diagnosis. When I was at the lumpectomy stage my consultant thought that would be all I needed, but it wasn't to be. Good luck with your diagnosis.

Thanks endless - I suppose a small mercy you don't need chemo or radiotherapy.

Well, I have just had the following email from my GP (the Danish one):

Dear Mrs B,
I have just got a call from Dr X. She was informed by Dr Y that he came to the conclusion that the nodule which was removed reveals the signs of malignity. He will leave the report for you this evening at Villa M and there will be enclosed an address of his office where you can pick up the fragment of the biopsy to be brought with you to London.If you need me call me.
Best Regards
Dr Z.

So what do we make of that? "Signs of malignity"? I was 70% chance of the lesion being cancer before the biopsy was taken, has this pushed me up to 90% do you think? Or does signs of malignity actually mean, "you have cancer".

I know if I call her and ask her these questions, she will just say the same thing "they are not sure, they think there are signs of it being malignant, you should travel to London for further tests", so there's not really much point of phoning her back. But I will I suppose.

Not sure what to think really.

[Post edited by MNHQ]

I have no idea what that means! It sounds like you need more investigative work done. They probably don't know either, to be fair. Are you coming back to the UK just for the NHS/Bupa stuff? Or do you have a home here too? I started with the NHS, then went with Bupa, because the dates fitted me better.

Your ball is now rolling, which is a good thing, and takes you one step further to being through it. But it still feels shit, doesn't it.

Just a quick message Boobz, as I can't help with any of this I'm afraid, are you sure you want your real life name and doctor's names on here? If not, report your post and MN can change the names for you (assuming you haven't done that already!) :)

Just popping in to wave. I am still ok 8+ years post fx with triple neg bc and I wish both newbies and old friends all the luck and love in the world.

I wasn't bothered, but MN obviously were!

Yes the ball is rolling so to speak. Just did an Insanity work out and then had a shower, and now am amazed I didn't feel the lump before now.. I have such little breast tissue (BF 3 children back to back) that it's really obviously, just, THERE.

Sigh. This isn't going to end well is it.

I am waiting for an appointment for my Angelina Jolie style oophorectomy. It has been three weeks since the consultant promised to call. It is not urgent but I would like a date for planning purposes. I think Angelina has made it too fashionable.

Boobz - not knowing is hell. All that hinting must be driving you crackers. I hope they sort it out pronto.

mrs good news about the scan.
minty big hugs to you; you have a lot on your plate