**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

Sixpence welcome to the thread, but sorry you're going through this, especially on top of your Huntington's. I hope that they are harmless cysts I've no experience of cysts myself, but with the urgent referral thing... I think some GP's handle it rather clumsily. There is a two week referral guideline for any symptoms which could be cancer. The logic being that it is better to quickly rule out the more serious diagnoses first, then move on to the less serious ones. So it doesn't necessarily mean it is likely (I have no idea of the odds), but it is a possibility. But obviously it is worrying until you are told otherwise do you have an appointment yet?

No not yet she said if I hadn't heard by next week to call her x

Thanks Daylily: that site was helpful.
I have decided to have an implant as it's the quickest surgery and hopefully fastest recovery too.

Sixpence - my Ca 125 was 130 and my complex ovarian cyst/tumour was still (clinically) benign. Just having a cyst which is irritating other organs can cause raised levels.

I think GP's are having a bit of a drive on ov-ca at the moment. It's relatively rare and most will see only one or two cases every 5 years so it's good that they're bearing the possibility in mind. Even tho' waiting for scans etc is the pits, being on the 2 week referral does speed things up. And 95% of ovarian cysts are benign. So hold on to that while you wait.

Hello everybody. I am glad for the good news some of you have received and hope for those waiting that they get just as good news.
I have started losing my hair. First there was the pain and tugging feeling and then the shedding started. I am remarkably composed. I hot myself a wig and many various turbans, but I confess I avoid looking at myself in the mirror. I think i am trying to deal with this as practically as possible and not actually hiding any feelings. I think I am more worried about my eyebrows! I do not know how I will deal with that very in your face situation:(
Any tips?
Take care all.

Royalmama
When my hair started to come out a hairdresser shaved it all off for me and I spent the next months without ever looking at my bare head in a mirror. I wore a wig out of the house and Buffs at home day and night. When my hair has grown back enough to cover my head, I stopped wearing the Buffs but carried on with the wig until my hair was long enough to style.
I applied the gentle type of fake tan to my whole head whilst bald and wore make up far more than normal. My eyebrows thinned but didn't go completely so I could use an eyebrow pencil to fill in. My eyelashes also thinned and I used eyeliner rather than mascara.
One good thing was that facial fluff, moustache and chin hairs stopped growing and my skin looked quite radiant!

Lilymaid yes it will be nice to stop bothering about shaving :) I do hope .i glow too! that would make me less prone to look "sick"! i got myself an eyebrow pencil and hope, like you, i do not lose all the hair there.

sixpence how are you doing? Have you been given an appointment yet? Still thinking of you

And how is everyone else?

royal sorry about your hair. Mine thinned a lot during chemo, probably down to the anaemia rather than chemo, but I do remember the soreness. It's good that you have a wig organised, hopefully now that the weather is cooler that will be more comfortable, I know some people struggle with them during the summer months.

Have you heard of Look Good, Feel Better? I went and had a lovely time, others on here have been too. They are really good at teaching how to cover up some of the effects of chemo, especially things like drawing on eyebrows. They also give away various full size and good quality products.

Also if you wear mascara, one of the make up artists at the workshop said to avoid waterproof mascara during chemo as it dries the eyelashes out and makes them fall out more, so can exacerbate thinning.

I wouldn't say I glowed during chemo, especially once anaemia set in, but it did clear up my rosacea and keratosis pilaris (little bumps on upper arms), which was a pleasant surprise. They took quite a while to return too, and neither are as a bad as they were before chemo.

Hi everyone thanks for the warm welcome my apt is next Friday with a gynaecologist x

I have an appt with the gynaecologist tomorrow too, about my unexplained bleeding recently. I'm going to the ' bleeding after menopause' clinic, sounds delightful doesn't it? It doesn't fit either as I'm not post menopause. I'm feeling a little bit grumpy about it. I've been told to be prepared for a vaginal scan and a hysteroscopy. The latter has me feeling pretty anxious, I'll be asking for all the pain relief they have. I did my being brave bit last year with breast cancer, now I've had enough of being prodded.

Thanks whatwould i will check out my options. I had my second chemo yesterday, so feeling a bit tired now. The eyebrows are still here for now( i have heavy brows).
mrshodgilbert sincerely wishing you all the best and by all means yes do not suffer and get whatever they have in terms of pain relief. We have enough as it is!

Royal, I see you were up in the middle of the night, are you feeling really grim? I hope you managed to get some sleep.

I'm feeling really jittery about this procedure and feel pretty stupid. I've heard such varying stories, some hospitals do it under GA and mine is planning to do it in out patients. Some women say its extremely painful, others hardly feel it. I just don't seem to cope as well as I used to, a legacy of cancer treatment.

mrs it is understandable of course and I fully agree that where there is any risk of pain, you have the right to ask for relief.
As for me, i have been sleeping on and off, feeling sort of dizzy. I am hoping, like the first round this does not last long.

I hope you begin to feel better today royal, rest as much as you can.

Hope the procedure went really smoothly for you mrs. I completely get what you mean about the bravery thing, I feel so much more fragile than before diagnosis, I think that's really understandable.

Thanks queen. The hysteroscopy was not great, but not as bad as I expected. She was amazingly quick thankfully, the camera was through my cervix without me even realising. However I could easily have walked out of there, she did say I could have it under a general another time or they could try and see how I coped. As there is so much going on with my family at the moment I just don't have time to mess about so went for it. It was the right decision, I did cope.

Whilst she didnt see anything to indicate uterine cancer at the moment they are testing for other things. To be honest, whatever it turns out to be is a pain. Return of periods, despite the tamoxifen, would be enormously annoying as they have been so heavy. Can't leave the house heavy. The worst case would be something requiring a hysterectomy. It feels like my life is about to get a bit more difficult again. Luckily I have an appt with my bc nurse on Monday, I'm going to quiz her. I think I need gynae, surgeon and oncology to be working together.

Royal, I hope you're feeling a bit better today.

mrs thanks for asking. i am still struggling with the abdominal discomfort of the chemo and dor the first time since i started chemo, i am feeling really down, mainly because i know there is more of this ahead and having to expect this for the remainder of the cycles is so agonising. sigh. Anyways mrs I really do hope you get some good answers and are spared any further difficulties.

mrs I know exactly how you feel! I have had 3 bleeds this year! Oncologist said it was periods returning. Gynae said it was unexplained bleeding...hence needing a hysteroscopy! Once that was done and biopsies were clear, I went back to Gynae, who said the Tamoxifen is shutting down my ovaries?? In the same week my Oncologist said my periods were returning but would be irregular for a while??

In the same week I was told by Oncologist that Tamoxifen helps protect bones and Gynae said that's not really proven? Seriously if they don't know or can't agree, where does that leave us? I then had a whole conversation about having ovaries removed? Not something I am interested in, but Gynae was keen on the idea?! I can't help thinking they all have their specialised areas and when one treatment affects another body part, they don't really know what to do!

They are all treating just their area, instead of treating us as a whole person! So frustrating!

I'm glad you at least got through the test okay. I hope you get this sorted soon! I've come to the conclusion that I will be stuck seeing the Gynae on and off the whole time I'm on tamoxifen :-( Very frustrating!

Hi nanny, nice to hear from you. That sounds very frustrating and exactly what I fear will happen. I think it's periods returning rather than anything more serious and I don't think they'll do anything about it. I've tried to do a bit of reading but not come up with anything helpful.

I'm not looking to have a hysterectomy at all but neither do I want these awful bleeds to continue. As I said to the nurse doing the hysteroscopy, would I have to go through that each time? She just shrugged her shoulders. I'm doing ok on the tamoxifen otherwise, thoughts of changing it scare me.

Have you decided to just put up with it for now? I'm lucky in the sense that I don't work so have coped with these bleeds at home. But as they have both arrived so suddenly and without warning it could be very difficult if away.

The nurse said its not recommended/affordable in this country to check the uterine lining of women on tamoxifen, whereas elsewhere annual checks are done. She did say that I may be discussed at the multidisciplinary meeting but I wasn't aware gynae were part if that. I think this is a rare SE but there are at least four of us here struggling with it.

mrs I have come to the conclusion that they don't really know what's happening and my body is just going a bit loopy. I was offered the Zoladex injections (think that's what they are called) but I have declined. As adding more drugs into the mix, really doesn't appeal to me.

I am thinking about stopping Tamoxifen in 2016 anyway, as I've had enough of feeling rubbish! Having said that if things improve in the next 6 months I might try and stick it out a bit longer. The Oncologist said that the first 2 years on Tamoxifen are the most important, and I have just reached a point, where I want some quality of life back! Also be nice to start sleeping again!

I now see Oncologist and Gynae every 4-6months. Each time we seem to have the same conversation. Like you when I have a bleed/period it is heavy. Although I have to say my 1st was the worse, and the next two were very heavy for 2 days, then not so bad! Haven't had one now for 3 months, so not looking forward to the next bleed/period, IF it happens!

After all we've been through, this is a real pain, and I don't think the doctors realise what a complete nuisance it is! But then they don't have to live with it! Xx

I've just seen my Oncologist this afternoon. He has concluded that hormone treatments don't work for me so I shall have to go back on intravenous chemo to treat the secondary tumour. So next chemo will be Epirubicin and he's advised against scalp cooling as this would mean that any tumour in the bone marrow in my skull wouldn't then get zapped.
So it will be back to the wig again after my hair had got back to near normal . And I shall have to rethink whether I can continue work as before .
But, we are off to Copenhagen for a short break whilst I can still travel and will plan a holiday somewhere warm for the New Year when the treatment (which is supposed to be easier than Taxotere) ends .

mrs glad that your procedure went OK, but I hope they can come up with an answer so you don't have to go through this again.

Lily sorry to hear that how frustrating about your hair too. I hope that the epirubicin is horrible for the cancer cells and not too troublesome for you. Enjoy your trip to Copenhagen :) and holiday planning for post-chemo too.

Hi All, sorry I haven't been around lately. I decided to have a 'cancer-free' summer, and not make any decisions. The consultant said nothing was urgent, so we put it on the back-burner.

Mrs Rhod - glad the hysteroscopy was okay. After my first one, I felt slightly shakey and felt like I walked like John Wayne! i also had one under general, and found that easier (apart from not eating first thing).

I thought when I was told I didn't have womb cancer, I would be at then end of the journey. However, endometrial hyperplasia could turn into womb cancer, so,I still face that possibly. We could have the hysterectomy soon, but have decided to delay it, repeat the test, and possibly have it later, due to work and family's commitments.

Lovenanny - I had zoladex injections for two years. I didn't have chemo and was told they would provide me with some of the benefits of chemo. They were monthly were okay, except made me put on weight .

I was talking to gyne specialist nurse during the week. She said that hysterectomies are done by keyhole surgery now, and recovery time four weeks. Although you do have to be careful for the first couple,of weeks, you will be relatively up and mobile quite quickly. It's not like hypysterectomies of past days.

(Still cautious about having one, though).

Hello to all those who,I haven't met before.

Nanny, I'm going to show my ignorance now, I've heard of zoladex but I don't actually know what it does. Like you I'm not inclined to change things unless there's no other option. But it is a real pain and something I wasn't expecting.

Hi river, nice to hear from you again. I can understand you wanting to have some time away. I think it's endometrial hyperplasia she was most concerned about. Apparently my womb lining was 10mm as apposed to 3mm in march so something is occurring. If it is that I'm hoping that there won't be a great rush for surgery. Like you the timing is not great right now. Very interesting what you say about keyhole surgery though. I've been googling gynaecologists at my local BUPA hospital. There is one who also works at the local district hospital too so I may ask to see him. The BUPA hospital is a ten minute walk from home and I wonder if it might be worth using our cover if I need more surgery.

Lily, hi. Sorry to hear you are having to go back on the chemo and all that entails. I hope it's not too nasty. In the mean time have a lovely holiday.

We've got dd2 going off to university a week tomorrow. I want to be enjoying her last week at home and not worrying about test results and further treatment.

Hi, I'm new (sadly). I've just been diagnosed with lobular breast cancer and am awaiting a mastectomy. I'm convinced, however, that it has spread to the base off spine as Ive been having backache for a couple of months, especially at night. The Mri scan showed something (small but not sure what!) but the ct and bone scan were clear so I'm awaiting a pet scan now. I'm fairly sure this will show something but I'm guessing then that they'll have to do a biopsy to confirm exactly what it is. I'm still reeling from the initial diagnosis and terrified that I'm going to leave my children motherless. We haven't even told them yet...