**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

Thanks dinster and Lily, all I can think about at the moment is the cancer spreading. It seems like in two weeks I have gone from feeling totally fine and healthy to facing the prospect of terminal cancer. The consultant has seemed very vague the two times I have seen him, unable to tell me the stage and just reading bits to me from the reports. The nurses have been more helpful. Just praying and praying that there's a possibilty of being cured. I can't imagine leaving my 10 year old dd without a mum. [sad}

Fresta, it is silly to tell you not to worry, so I won't. The statistics are on your side though.

I will say that a CT scan is perfectly normal and not an extra because they think it is something sinister. The scan itself is quite quick and painless. They will not give you results at the time because the images are really hard to read. Do not read things into the expressions of the technicians and radiologists (I did this -very silly). Remember to ask when the results will be ready for you.

The treatment you are facing is unpleasant and draining, but you will cope and come out the other side.

Unfortunately the diagnosis of cancer is not straightforward and the doctors are often annoyingly vague when you just want to know what's going on. It is infuriating.

I'm sorry you are having to go through this. It is natural to be scared and panic. I know I did. Most breast cancers are cured you know.

Thanks Sleepy your words are very reassuring. I'm not really worried about the scan itself, just the findings. It sounds similar to the MRI, although not liking the sound of the contrast injection, that sounds unpleasant.

The contrast injection isn't anything much (unless I'm getting confused). It is done when you are being scanned and the only side effect is a warm feeling in the nether regions for a few seconds!
I have regular CT scans and the procedure is not unpleasant, though the Scanxiety always is!
MRI breast scans are another matter ...

fresta sorry you've had to join us. Your consultant won't necessarily know things like stage yet, though it is frustrating not to have all the answers.

The contrast injection is not painful. It seems to work slightly differently at different hospitals, but when I have mine, they insert a cannula and then I lie on the scanner bed thingy with my arms above my head (the scanner is a big ring and the bed moves back and forth through it, much more open than MRI). They attach a springy tube from the contrast pump to my cannula, then start the scan. After a few minutes of scanning they tell me the contrast is going in. It is a bit tingly, my face usually tingles and my chest, also they say it makes you feel like you've wet yourself. I wouldn't go that far, but there's certainly a warm sensation in that area. Then they do some more scans. That's it really.

You will be told to breathe in and out and to hold your breath at various points. Sometimes they go over the same bit several times, if you accidentally breathe/move at the wrong bit. As Sleepy says, the technicians are not qualified to interpret the scans.

Sorry if you already knew all of that!

dinster sorry you missed the school trip. Recovery is boring and frustrating but better to do it right first time than to end up with complications from overdoing it :) hopefully in a few weeks you'll be feeling much better. Good luck for your appointment tomorrow

The nurse was able to tell me more info than the consultant. It is grade 2, and oestrogen positive, and the main tumour is at least 3.2cm at widest.

Thanks for all the info everyone, it is so nice to speak to people who have been there and done it.

Fresta, I think having the ct scan is a good thing; they're just being thorough and then hopefully will put your mind at rest.
I had a mastectomy 3 weeks ago now and I'm still waiting for a treatmemt plan. I have pain in my sacrum area and the Mri scan showed a small 1cm lesion so they then sent me for every scan under the sun - CT, bone scan, Pet ct scan - none of which showed anything in relation to the sacrum area, although the pet ct which showed two ovarian cysts, so something else to worry about! I don't understand how the scans can miss a 1cm tumour on my sacrum! It doesn't fill me with confidence to be honest. Anyway, they then sent me to the spine specialist hospital in Oswestry where they did a biopsy of the lesion yesterday (that was pleasant!) and I now have to wait a further two weeks for the result. They also said that the result may not be conclusive. I was diagnosed 6 weeks ago and I now have pain in my neck/ back of my head, like a stiff neck, that I'm convinved is the cancer moving up my spine. The Drs say, don't worry you've had a scan of your spine, and I have to point out that the scans didn't show the tumour that actually was there! So all I'm all, things are pretty crap at the moment.
Can I ask, Lily, how your bone secondary was diagnosed? Did it show up on the scans? Biopsy? And did you have any pain? I'm pretty sure that it has spread to my bones and I just want to crack on with treatment, whatever that may be, as I find the waiting around for results do frustrating and scary.
Sorry to moan...

Also Fresta, the fact that it's oestrogen positive is good. It means that it will be responsive to treatment.

I hope your results come back clear Anna. It seems to me that when they do scans they seem to find all sorts of lumps and bumps which turn out to be nothing, I hope it will be the case for you. You must be feeling pretty battered at the moment.

My GP has just called me in for a medication review and won't renew my prescription. I never go to the GP. Its not as though I have any chance of giving up the letrazole, much as I would like to. Surely they are just wasting nhs resources? Grump.

Hope the results come back clear for you Anna. The aches and pains could feel worse due to the stress ans anxiety. I have ached all over since my diagnosis

Anna
Can I ask, Lily, how your bone secondary was diagnosed?
Well, I did have excruciating pain in my pelvis a few months before I was diagnosed and around that time I became aware that one breast was thickening up. When I went to the doctor, I (foolishly) only mentioned the breast at the end of the consultation after having been lectured about losing weight! So I carried on taking the paracetamol and ibuprofen and also had some chiropractic appointments. The pain lessened but didn't go away.
When I did get referred and went to the breast clinic, I must have mentioned it. Anyway, as soon as the diagnosis of the primary cancer was given I was sent off for CT scan, nuclear imaging etc and then received the secondary diagnosis within a further week.
Once on chemo, the pain disappeared!

Hello fresta welcome although of course i am so sorry you have to go through all this. There is nothing more reassuring and helpful than being with people who understand and know what you are talking about because they have been through or are still going through what you are now. I am currently undergoing chemotherapy and had my lumpectomy and full axillary clearance in July. Yes, your lfe suddenly seems to be turned upside down and yes you suddenly think it is all over when you actually do not feel one bit sick! I have two children under ten too and my initial reaction when i was diagnosed was fear and panic about leaving them. Having said this, you do manage and become less terrified once the full picture becomes clear and you start treatment. You feel sort of more in control as opposed to dreading and worrying and guessing. Having scans is crucial although cumbersome. I had so many different types from normal ultrasound to bone scans to MRI to Ct !! They do reveal so much( sometimes stuff you never knew about like cysts!) and that is what helps the doctors determine where to go from here and how to tackle the situation. The more information they have, the more able they are to plan your treatment.
I encourage you to come on here and talk and ask and even have a good rant when you need to. We do not judge. We do not just listen and nod. We know and we are there or have been there. We can talk with and to you.
Wishing you and everybody else all the best.

Yes, it's true that once you've been diagnosed with cancer, every little ache and pain becomes sinister.
Like you, Lily, I went to the Drs with back pain, I thought I had a prolapse, and I asked the nurse, as an afterthought, to look at my breast as my nipple was very slightly pointing down; I'd thought it was just old age sending everuthing South! I couldn't even feel a lump. So it was a bit of a shock, to say the least, when I was diagnosed.

I still can't quite believe it when I write it down, it hasn't really sunk in yet.
Oh and regarding the ct scan, if they do the one where they inject you for contrast, it can feel like you're wetting yourself as you get all warm down there! I was convinced that Id had an accident but the radiologist said everyone thinks that!

How's everyone doing? Have you managed to sleep any better, fresta? How are you doing with the waiting, anna?
to all.
I found out yesterday that my WLE and node removal should have removed everything but because of it being a grade 3 and the nodal involvement, I'm to have chemo, rads and five years' hormone therapy. Spent yesterday running on adrenaline and relief and being bright with everyone about the good news - because it is good news and I know how fortunate I am... But today I feel flat and like there's a long slog ahead and like I'm somehow choosing to make myself less useful and available to family and friends over the coming months. Does that make sense? Is it ok to feel mixed up?

I had my 2nd Epirubicin chemo today. My Hb levels are down again so I will have another blood transfusion on Monday, which means another day off work.
My hair has just started to come out, so I am off to hairdressers to be shaved. I know it will all come out anyway in the next week and I've been having dreams about it all coming out in a pub or a shop! let's hope the wig has survived 18 months in the clothes chest.

That sounds tough, Lily. I hope pre-empting the hair loss stops the dreams! Really hope you have as restful weekend as possible and are back to work as soon as you want to be.

Sorry Lily. That must be so hard. My Hb levels dropped on carboplatin and had to have 2 blood transfusions as well. Felt amazing after I'd had them though! What do you do, if you don't mind me asking?

Dinster - it's so much to process isn't it? I had such a strange experience, with a pseudo-diagnosis in Italy before getting the ball rolling in the UK, and had a whirlwind of a week: meeting the onc, ECG, Pet scan, portacath insertion, chemo ward tour, and pelvic ultrasound and so on. I think the chemo ward tour was the hardest - as I really did feel like a fraud going in there - I was the fittest I had ever been! But you will adapt and it will get easier - especially by chemo 2 or 3. Have you healed well from the surgery?

Anna when do your results come through?

I am having my double MX and recon in a month's time, then I'm spending Christmas with the family in France, and then I'm heading to this place for a bit of restorative new year thinking, eating, feeling and hopefully rebooting post all this cancer treatment.

www.buchinger-wilhelmi.com/

Some interesting stuff on fasting with cancer is happening at the moment, so given I can't have any more treatment after surgery, I'm exploring more alternative routes to try and stop it coming back...

michelsonmedical.org/2014/12/26/igf-1-fasting-discussion-valter-longo/

Hello ladies. lily sorry about having to go through the chemo effects again. I can't wait to be done with it all.my nails are looking like I have been cleaning out chimneys for a lifetime:(
Dinster now you are on track, you will just start to get used to this new normal, as it is called. I, too have a very sumilar treatment plan to yours.
Boobz i have read about the fasting too and I guess it could do no harm in trying. I have cut out most refines sugars as a sort of start to my new lifestyle now that cancer has invaded my being. I love how you have planned yourself. How does it feel now you no longer have to go through with the chemo? Are you feeling less tired now?
Has anybody checked out the exciting news regarding cancer treatment and malaria? It is still early days, but along with all the other studies going on, there is so much hope for the future.
Have a great weekend all and looking forward to hearing from fresta soon.

Hi, went for a meeting with oncologist yesterday and feel slightly more reassured as she was great! Had a ct scan, hopefully the results will be clear so will have a sentinel biopsy later in the week and start chemo on Friday- so much to get head round this week. Unfortunately I'm still too anxious to sleep well, but DH is being great and we haven't told dd too much as she is off on her school residential for the week next week and don't want her to be worrying while away.
Can anyone advise about wigs?
Still got fingers crossed for you Anna

Fresta pleased that things are improving a bit -it is a bit easier once you know exactly what is to be done and it gets started.
For wigs there is a useful website mynewhair.org which gives details of salons where there are hair stylists that know about wigs. I bought mine from a salon I wouldn't normally go to because of cost. It was quite expensive: initial consultation + wig + fitting and cutting to suit me cost around £400.00. But everyone told me they liked my new hairstyle (and thought it was real!) I reckoned that I would have spent about the same amount in cuts and colouring at my local salon during the period I used the wig. My wig is "monofilament" and is woven onto mesh. It stays on without difficulty (even in strong wind), doesn't get too hot and you don't need to buy a separate wig cap. Easy care - wash and dry, then restyle every fortnight.

Boobz glad to see you can now start to look to the future! As for my job: I am an information manager for a high end professional firm. I'm working for some of the cleverest people around, so it keeps the mind active! I won't reveal the sub-sector I work in as there are only about 10 of us working in this field in London!

I have been messing about with fasting Boobz. I have done 72 hours a couple of times which was fine apart from giving me a headache and making me grumpy. Difficult to work while having a social life though! Intermittent fasting is harder for me as it's that first 24 hours when I am most hungry. I am prepared to try anything that helps though.

CarolynW1980, have sent you a PM.

Hi, I have been following this thread for a while, can't sleep so may as well post! I have the BRCA 2 gene and will be having a double mastectomy and reconstruction (implant) done in mid November. (Sounds similar to you, Boobz!)
I was feeling ok with it, but have been thrown into a bit of a tailspin with some bleeding/ pelvic pain meaning that I will be having an ultrasound of my ovaries tomorrow. Am terrified it is cancer, worried as the BRCA gene leads to a significantly increased risk of ovarian cancer as well as breast cancer. Was feeling quite positive about the upcoming surgery, this has knocked me for six..:-(.
Does anyone know how quickly I am likely to find out if the ultrasound shows anything of concern?

When I had an ultrasound on my ovaries (because the pet ct had shown some activity) they told me there and then that the cysts didn't look suspicious so they would just review them in 3 months. I don't think that they can tell for certain fro
The ultrasound whether they're cancer or not but they can get s good idea from the shape and appearance of them. I know that ultrasound is the best thing they have for looking closely at them.
I think it probably depends on the sonographer, most don't tell you anything but for some reason mine did. If not then it's usually a few days to a week before they do the report for your Dr.

Good evening ladies, this is my first post and I hate that it has to be here! I was diagnosed in January with grade 3 idc, I've had a lumpectomy and node removal (all clear, thank god), 5 rounds of FEC (just couldn't do the last one), 15 rounds of radiotherphy that finished last week, and have just started taking tamoxifen.

So went to the docs today as boob is quite sore and painful from the radiotherphy, would seem I have a touch of thrush on the underside, but the worst thing - I got her to check my right boob (cancer was in left), and she could only bloody feel somethng. Distraught doesn't even cover it.

Rang my BCN and I've got an appointment with my consultant next week, but flipping hell. Fingers crossed it's nothing, I did have a fibroidadanoma in the left boob, the cancer was hiding under it, so hopefully this is something about nothing.

Not sure why I'm posting, nothing anyone can do until next week, just need to put it out there.

Thanks, Annafivetowms! Well, the sonographer was very nice and told me that that my ovaries look normal, which is a massive relief. Now just the mastectomy to go.