**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!

Hi all,
sarf - sorry to hear about your friend. I'm sorry that I can't give you any advice.

Sierra - I found radiotherapy fine and carried on a relatively Norma l life. I was fortunate that the hospital is only 15 minute drive away. I used to go into work afterwards, and just ensured I didn't do anything strenuous. At the end of three weeks, I got sleepy earlier in the evening and would be in bed by nine. One side effect I had was that my boob got covered in 'black heads'. Not very pretty. The whole thing was okay though. The machine is above you and you are not enclosed. A lot of measurements are done initially, and I got three blue tattoos ( looks like pen marks) so they can line up the machine.

Sarf sorry to hear about your friend. Once breast cancer has spread there is no cure I'm afraid, there are lots of treatments she can have and she might well have many years left, I do hope so.

Mrs Rhod glad that you enjoyed Paris, I didn't know about tamoxifen causing hair loss that is a pain

Sarf, so sorry to hear about your friend. I was treated in the US last year, the treatment plans are broadly similar to the UK. I suspect the difference with your friend's treatment is likely because it's already spread to her bones. I'm so sorry.

Thank you ladies, it's an awful thing isn't it. So she should keep taking the treatment and looking after herself and she may have more years ahead of her. It has all spread at an alarming rate, she had a mammogram in November which was clear, and since then, she has developed cancer which has spread - so scary. I wonder if they have Macmillan nurses in US?

Sarf I have secondary breast cancer too, just in my bones, and have not had a mastectomy or radiotherapy. Once the cancer has spread most doctors do not advise mastectomy as it has little positive effect. The 5-10 years only means that on average, in the recent past, patients generally survived that long. New drugs and treatments are coming out regularly and the life expectancy increases as there are more effective treatments. Obviously the secondary diagnosis isn't good news but, hopefully, it can be treated as a chronic disease successfully for a very long time.

Crikey Lily I hope so for all of us. I feel really panicky about it, and keep thinking what I would do if I only had 5 years left - the answer is nothing that I am doing now! Makes you really realise what's important doesn't it.
Thank you all so much for your advice, and I wish all you the very best, xxx

There are no MacMillan nurses in the US. Generally 'pastoral care' and support is much worse. Hopefully she'll find a supportive GP or a supportive oncologist, but that's down to the luck of the draw.

Basically US heathcare is quite fragmented as it's still based on 'fee for service'.

On the bright side, Obamacare got rid of 'pre-existing conditions' so she'll be able to choose a new health plan if needed - often happens with chronic conditions, where you want a high-cost low-deductible plan. Most people choose low-cost plans, for obvious reasons.

Much depends on where she lives and if there happens to be a helpful charity nearby.

I'm hoping she'll come back to the UK, but I think she's worried about not being able to get private health insurance here with a pre-existing condition. Maybe she doesn't even need it with the marvellous NHS.

Sarf, the NHS does very well for treating cancer. Often no real need to use private healthcare, other than faster appointments for results and nicer surroundings. Breast cancer is being turned into a long term health nuisance, same as diabetes or similar. There is a real expectation of many years of quality life after a diagnosis of it spreading beyond the breast. And some radical researchers are muttering about 'cure' within ten years. We're already seemingly seeing that happen on some of the new drug combinations, for a small number of people. So it may be a long term annoyance rather than 'eek'. There are no guarantees of course. From all I hear, the US is very good at the latest medical findings, so hopefully she is in safe hands either side of the Atlantic.

amber that all sounds great. Do you have any links you can point me to, just so I can send it to my friend? She has two children and a rather feckless DH so she is really worrying about how much time she has left....

NHS treatment is good but there are almost certainly some hospitals that are better than others. Also some oncologists that are better than others.
FWIW my treatment is currently covered by my work BUPA so I attend a private hospital and my Oncologist is the Head of the breast unit at the NHS hospital in that town (think world famous university town) which is a major teaching hospital and cancer centre.
If I went NHS I know my treatment would be excellent there (have friend who was treated there) though the lunches would be less good!
If your friend returned to the UK she might want to think about where to base herself (and whether she'd still qualify for free NHS treatment if she has been out of the UK for some time).

Sarf, the PubMed database for example lists 5 or 6 new studies a day on new treatments and their effects, on average. Very technical but always new stuff coming up in there.
qhr.sagepub.com/content/early/2015/06/25/1049732315591787.abstract is a quick scientific view of breast cancer metastatis at the moment: "Metastatic breast cancer [cancer that has spread to distant parts of the body, not just breast and lymph nodes] is a disease of changing status—once an imminent death sentence, now a chronic (albeit incurable) disease".
What I would possibly re-ask about, if I were your friend, is surgery.
www.ncbi.nlm.nih.gov/pubmed/23412771
That's a study showing a clear benefit for surgery, for those with cancer that has spread to bones. It's written in Technical, but the last sentence gives the summary. It's quite possible that her team has another study showing their treatment is also as good, though. I don't have her biopsy reports etc so can't add anything useful from the info I have.

is anyone about?

ive had a bath this morning -fanstastic- made sure not to lay in the water but even just splashing my left side has made the dressing come off

i still have a line of little strips on the wound...im 13 post op, is it ok just to leave it now or do i need to cover it up??

Hi looking. I had a WLE and SNB rather than mastectomy and had a large clear dressing over half my chest covering both wounds. Showering made the edges of mine peel away after a couple of days and I used to trim the loose bits off. The final piece came away at my post op appt which was about 9 days after surgery. The wound looked 'sealed' by then and the nurse also removed the remaining steri strips.

I'm guessing you haven't been told what to do, not sure I was either actually. Do you have a follow up appt coming up or a bc nurse you can call?

It's a while since I had my op but I would have thought you'd be ok to keep it uncovered now, do ring and ask if you are worried though

First day of the school holidays here and rubbish weather, typical ! Have finished my job, feel sad but also like a weight has lifted. Keep wondering if I could have coped with the stress better if I hadn't had cancer, I guess it's impossible to know though I'm not the only one to have left

Hi malt, not quite school hols here yet but we have the rain. Which age range did you teach? The teachers I know personally have had a tremendously hard time managing the stress over the years, to the point of breakdown. Dont beat yourself up about it, it is what it is? I'm not one for getting too philosophical but I hope life feels a bit better once you get used to the new routine. Will you do something different?

We need a new thread too!!

We need a new thread too!!
Any inspiration for a new title? Summery theme ... but it will be autumn by the time the thread is full!

Thanks Mrs Rhod, I taught Reception and year 1 and only 3 days a week but with all of the paperwork it took over my whole week. We had a rubbish head who has now gone but left us in a real mess. I'm going to do supply, so hopefully teach a couple of days a week in different schools but not have the responsibility and stress, I've joined an agency. Will see how it goes after the summer.

Yes we need a new thread ! Summery theme definitely, pimms and strawberries? Will leave it to someone false though as I'd mess it up !

Hi all, Just wandered if anyone else had considered giving up the Tamoxifen early? I have been plagued with horrible side effects, which affect my everyday life. Having spoken to my Oncologist and found out what my recurrance rates are with versus without treatment, I was shocked to find how little protection the Tamoxifen is giving me. His advice was to try and cope till the 2 year mark as he feels that a lot of the good work is done by then.

I haven't made any firm decisions but just wandered if anyone else had stopped early or thought about it?

For those of you just starting on this journey I can reassure you that most ladies take the drug with very few side affects and some ladies have no side affects....lucky them. Xx

Nanny
I've been on Tamoxifen and Letrozole and both of these slowed me up and gave me aching joints making me feel even older and crotchety. Last week, my Oncologist said he wanted me to go on another hormonal treatment, Exemestane (only for post menopausal women). After a discussion, we agreed it was worth a try. In my case I have to take something to control tumour growth as I have secondaries, but I can understand that in your case it is rather different.
Is there anything else you could take instead that might not have such side effects? My oncologist tries to find treatments for me that have least bad effect on quality of life and there are usually other options available.

I too will most likely be prescribed Tamixifen once the operation is done and from all the reading I have done, I am very very anxious about the side effects, some of which make me wonder how can THIS be the treatment when it is so dangerous, but what choice is there? Very littel, if none other than to follow in the footsteps of all the BC warriors before us?! I wish I could say no, but I feel crippled by the dilemma. Makes you think if it is quakity or quantity these pharmaceutuvals seek wehn they invent these medicines, don't ge me wrong, I know much progress has been made in treating cancer, but now I have it and have done my intense research, it just seems so frustratingly limited.

Thanks lily I have discussed other options with the Oncologist but as they all have their issues, I am looking at whether they are worth it for the very minimal effect they could be having, in MY particular case. I've got months to go so still time for my body to start accepting it, or for me to make a different decision.

Royal as I said before many women take this drug and others with very few side effects. Don't talk yourself into them before you even start, you may be one of the lucky ones who has very few or none.

Sadly for me my body doesn't seem to like them. Also having an Oncologist and Gynaecologist who contradict each other, hasn't really helped! But that's another story!

I've taken Tamofen for three years and been okay. I did get hot flushes initially, and took evening primrose oil for a while to combat this. Now, I don't get them very often, and they are fairly mild. Not aware of any other side effects ( off to read up side effect info). all medicines can have side effects, and chocolate can make you fat and give you spots, but it doesn't stop me eating it!

How much protection does your onc say it gives you? I guess it's better to have some protection then none. I always understood it gave quite a lot of protection( off to do more googling).

Evening all. Malt- lovely that you've finished. Am about to do three more days and then we can rest.

Looking- did you phone your BCN? My dressings had to be pulled off. I would think the steri strips need to stay on until your go back so maybe just have a bath so they don't get splashed?

Have been to oncologist today. Cardio results good so ok for two more Herceptin but as they have changed me to have it at home it has been a nightmare to sort out. Somehow my date has been moved to Thursday instead of tomorrow and I am hoping my time will be a later one as have meetings. It was all sorted but I think the oncologist put something wrong on the system. Never mind, just lots of phone calls to sort it. Am going to have a bone scan as have a sore hip that has been niggling for a while. Am trying not to think about it too much but am getting a bit worried as it doesn't really hurt when I exercise or walk but is uncomfortable to lie on and aches when I sit a bit. Feel a bit emotional tonight but have to get stuff sorted for my class tomorrow.

Will get back to thread properly when I am on holiday.