**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

Hello everybody. hope you are all well.So, putting in my porta cath and the Chemo are being delayed because the breast MRI I had yesterday showed a possible infection in the fluid buildup in the breast where I had lumpectomy. So, they took some of the fluid by means of aspiration to check. ( God I feel like a colander from all the needle pricking I have had so far).so, if there is indeed an infection, I will have to take a course of antibiotics before any chemo can start.
It is amazing how light and relieved I felt to have the chemo delayed, although I know there is no escaping it and that it will have to happen! The change in my mood was drastically massive. Should I be concerned I wonder

Royal- I hope you don't have an infection; as you said you have to start chemo at some point but I totally understand you feeling relieved. The waiting for it tobegin is difficult. I wasn't allowed to work during chemo as I teach and the risk of infection was too great but I did have my own children around and avoided a couple of bugs they got. My breast care nurse wasn't overly worried about the risk from my boys- I just took the normal precautions such as zealous hand washing! I know that lots of people on here have been able to work during chemo or at least around their ' bad days'. I probably could have managed one week out of every three if I had been able to work but a friend going through it at same time would have managed most days probably. It really does depend.

Speedy, I am taking time off work too during the chemo. I teach too though at university. I havw yet to see how the side effects hit me especially as I have two boys under ten too. I felt like I was preparing for war the other day as I went into the supermarket and grabbed thungs like antibacterial soap, wipes, disinfectant, etc
We never even had a thermometer at home and I had to get one :)

Royal hope it isn't an infection, can understand you feeling relived but in another way the sooner you start the sooner you finish ! I had to buy a thermometer too as never had one at home. I am a teacher and took nearly a year off by the time I'd had 2 ops, chemo and rads I didn't pick up any bugs from my own children though and did go to supermarkets,cinema, restaurants etc

Hope everyone is ok, having a nice chilled out summer holiday here and enjoying the sun

One one hand I dread starting yes,but on the other hand I want to start and get it over with. It has been 4 weeks now since my surgery, and I understand the guidleines are that chemo should be started around now.
malteserzz did you have those injections for boosting the white blood count? i usually have a good immune system, but the unknown realm of chemo makes me anxious of course. did anybidy find any particular foods, drinks, etc help them out with the fatigue?

Hello all, bit of a mixed week for us. My lovely bil died of cancer on Tuesday night. He originally had bowel cancer about 15 years ago and was successfully treated but was diagnosed with another primary in December.

This morning dd2 has just discovered she has been accepted at her first choice university for September. She's going into school at 9 to get her actual results, it's all back to front these days. Finally something to smile about.

Mrs Rhod I'm very sorry about your BIL how sad. Well done to dd

Royal I didn't have the injections to be honest I wasn't offered them and only found out about them on here, think different hospitals do things in different ways. I had 6 weeks between surgery and chemo simply because it took that long to get an appointment. Honestly the thought of it is worse than the reality, yes it was tough but I was never sick and managed to get up and dressed, basic housework, cooked for the children etc and on my good days went out and met friends, went shopping etc. if you do get side effects there is always something they can do to help you or you can post on here and someone will be able to say what helped them. You'll be fine

mrsrhodgilbert, i am so sorry about you bil.
The news about your DD is great and you must be proud.

malteserzz, thank you for the reassurance. I truly hope my chemo experience will not be as frightening as my mind is visualising and that I can manage the same basic stuff you mentioned at least.

mrsrhodgilbert sorry for your loss and well done to your DD2.

royalmama I run my own business, so basically if I don't work I don't earn.
I was panicking about chemo because mine started in Sept and finished end of Dec which is the busiest time of year for me.
I managed to work nearly every day (except first four days after first chemo and first day after 2nd and 3rd chemo).
My son did my post office runs and shipping times for large custom/corporate orders were worked round my chemo dates.

The four days following my first chemo were the worst out of the whole experience but you need to remember it goes round in a cycle and chemo affects everyone differently.

The district nurse come the day after chemo to give me the injection to boost white blood count.

Thanks gemmateller for sharing your own experience. It is so interesting how different people cope and are or are not affected. Of course the chemo regimens can vary as much as the individuals too. I really do feel working will help keep me busy, but logistically, and with DC to pick up aft school and then home and all that ensues,I think I should not risk it in terms of my own sake and that of my students. So, luckily because I am part time, I was able to ask not to be assigned classes this term and to delay doing so till the new year.

My younger sister had breast cancer 18mths before me, she had a full nine months off work.

When I woke up in a morning DH used to ask 'how are you feeling today, what are todays symptoms?
My answer would be 'wait till I've sat up/got up/been to the bathroom'
Sometimes I'd only be up an hour and say 'nope, I've got to go back to bed'

I have a question I need to ask - and I know it affects everyone differently.

I have been told that chemo will only prolong my life by 8 weeks or so (I have Stage 4 bile duct cancer with met to lung).

Does anyone really really think that going through chemo will be worth it? (I am nearly 70 and don't have anything particular to prolong things for.)

I know it is a hard question to answer and, as the end of the day only I can make up my mind for me, but my Hospice Nurse is away for the next 2 weeks and my GP is on holiday!

whetherornot for sure that is a tough question, but one you should ask and have the right to research. It seems to me you are weighing between quality and quantity. that is understandable, but I would urge you to seek as much of the information and options and professional opinions available to you. 70 is not old and that, in my opinion, is not the reason why you should opt out of chemo.
Have you tried calling Macmillan? They do offer advice and answer queries even over the phone. I would urge you to weigh all the options available and than make up your mind what is best for you and maybe discuss this with those closest and dearest to you. How you wish to deal with this depends on how you define your own life I would say. As I said before, I firmly believe we will only die when it is our time to do so and that no stats or consultants can specify or determine for sure when it is our time, but having said that, we do have the choice to live the way we choose.
I am sorry if I have not been of any help, but I just wanted to express what I feel and think regarding this.
I am sure the other fine ladies here will have more useful input to give.

I don't think I can be of much help either whether though I think I would want to try everything I could, it might prolong your life for much more than 8 weeks. Macmillan is a good idea but also if your hospice nurse and GP are on holiday there must be someone filling in for them you could speak to instead ?

Whether, if you want to live for extra years, rather than a few weeks, a trial with one of the specialist centres is the best way to attempt that. No specialist from one of those centres would say you would only have eight weeks of extra life. In any set of results, you will get people who live for all sorts of different lengths after treatment. Some go into remission and stay that way for years and years. You won't know until one of the big five specialist centres has given it their opinion.

Whether, the side effects from chemo for me are not bad really, mostly tiredness (and hair loss). Amber is right that you could live for years.

Royal, I have two DC under 10 years old and have been poo'd on and thrown up on as well as coughed and sneezed over. I did catch a cold once but felt no worse than pre-chemo with a cold. Hopefully you should be ok too.

MrsRhod, sorry to hear about your BIL. Congrats to your DD.

To whetherornot:
Do take note of amberlight's point, no one, not even a doctor can be that precise about length of survival time for any given treatment.
I am 71 and if it were me I would take any treatment offered with the proviso that I could stop if the side effects became unbearable.
I had breast cancer in 2006 and had FEC/Taxotere for triple negative bc. However I dont have mets so I am maybe not qualified to give an opinion.
I hope you can get a second opinion, that you can sort out the best possible treatment option and that you can have a wonderful holiday (before or after treatment).
Wishing you luck and sending love to everyone on the thread.

Whether - is there any reason not to ask for a 2nd opinion from one of the specialist centres, as Amber suggests? Distance shouldn't be a deciding factor, surely? And being 70 definitely isn't.

Mrs - so sorry to hear about your BIL. Lovely that you have some good news with your dds results. My ds got his results today which were better than expected, although he's not an academic, but we were very pleased. He's having a year out and prob applying next year when he's had time to think and grow up a bit. I have the day off work tomorrow as it's dds 20th birthday. She'll be back to uni for her 3rd year in a few weeks. Where did that time go.

It's been a good week here and I appreciate every nice thing and every bit of good news.

hotchocforme thanks for responding. I definitely hope I am not pooed on :) I guess only time will tell how the chemo will go for me. I am feeling much calmer and focused now. I am one of those people for whom knowing as much as possible is so crucial, despite the information sometimes being hard and painful. Knowledge( even when shockingly tough) seems to liberate and empower me in a way that some of those around me do not seem to grasp , and hence I keep getting remarks like " do stop reading, it will only terrify and stress you out !"
Yes, a lot of what I read and find out about chemo, for instance, is difficult and does worry me, but I would rather be prepared than taken fully by surprise.
Sorry for rambling on as such so early on in the morning:)

Whether, I wish you all the best and hope you get much much support.

I just started my own thread, I guess I'm not good at navigating here yet. Someone helpfully sent me a link to this thread so...
Hello everyone -
This is a direct copy and paste from the thread I started:

After much deliberation my husband and I started TTC for the 1st time this May. I'm 33, fit, healthy, eat well. He is 37.
In July I was diagnosed with bowel cancer. I had surgery last week to remove primary tumor. Due to start chemo in a couple of weeks.
Went to IVF last week, going to freeze some eggs before chemo starts, but I really don't know if I'll ever be in a position to carry a child now.
Its such early days, its so overwhelming. 2 months ago life was PERFECT.
I still have so much to find out - the Oncologists/specialists are keen for me to have chemo but they make it sound like I don't have a chance anyway.
I want to be informed, and make the best choices, but I'm also trying not to google. Anyone out there had a baby with stage 4?

www.mumsnet.com/Talk/life_limiting_illness/2447677-Was-1st-Time-TTC-Now-Stage-4-Cancer?msgid=56118613#56118613

Hi Anon, that's not the news you were hoping for, eh. Welcome to here and the lovely people.
Are you able to say anything about where the cancer has ended up? Sometimes there's useful new research that may help.
Definitely don't google. The stuff out there is nonsense and years out of date, so you might as well be reading something from the Stone Age.

amberlight Thank you for your nice message. Still awaiting a PET scan, but cancer is in my lymph nodes along my aorta, and as tiny specks in my lungs.

I've been away a few days and am catching up. Lovely to see my old chemo pal, Betsy, on the thread as well as MAS. Like MAS I am also having secondaries treated with Exemestane at the moment though may have the combined E & E (hormonal treatment plus chemo) in the autumn.
My Hb levels are down so I am having a blood transfusion next week to pep me up for my next two hols!
Welcome to new people ... But sorry you have to be here!

Waving to everyone.

mrsrhod I'm really sorry about your BIL. Congratulations to your DD. What a conflict of emotions for you all :(

whether what a difficult decision. I do think that it would be helpful to try and seek a second opinion. Even if they say the same thing, it could be helpful to have a different perspective. So much progress is being made that there is often more that can be done, especially if you are able to take part in a trial. Of course there are still cases where nothing can really be done, but it is worth pushing for other options. You could also talk to people with some experience of the type of chemo, perhaps a Macmillan nurse or your specialist nurse. Also if you know the name of the regime then the Macmillan website is really helpful for information about side effects. Here is the A-Z index of all the types of chemotherapy.

While I was looking for that page, I also found this page on making treatment decisions. I have no idea if it would be of any help. Apologies if you've already seen it.

I really hope that you can get more information and make a decision that is right for you

an0nan0nan0n sorry that you've had to join us. I had stage 3 bowel cancer a couple of years ago and have some frozen eggs. Have you started the harvesting process yet? BsshBosh sometimes posts and she has stage 4 bowel cancer. Someone sent me a blog when I was having treatment about a woman having bowel cancer treatment while she was pregnant. I don't know what it was called now, but will see if I can find it...

What chemotherapy are you having?

royal chemo varies so much, obviously there are some hideous side effects/reactions but they are really rare. Most people plod through with some annoying and uncomfortable issues, but can get on with normal life. Hopefully you will be one of them!

lily good luck with blood transfusion I hope it gives you a boost!