Breast cancer

Hi

Welcome to the Macmillan site - although sorry (naturally) that you have found your way here by way of having breast cancer for the 2nd time!

It's good news that your cancer was spotted early and early stages.  I sincerely hope that it is VERY early stages and that it hasn't spread.  I think the worry of that appointment was my worst of all. I (only) had a WLE, not a mastectomy but the operation was easy in comparison to the wait to find out if I would need chemo or just the tablets.  They told me at the start that it would be WLE, radiotherapy and tablets - so I think they have a very good idea but just need the confirmation of the sentinel lymph nodes being tested, so I hope that as they are talking tablets for you it proves to be the case.

As you say - pot luck on the tablets.  I'm on Anastrozole (similar to Letrozole) and I have little or no side effects.  The brand DOES make a difference though, so if you struggle - test out different brands.  I was stunned by the difference in just 2 days with aching joints etc when I was given another brand.  So I got the doctor to put on my prescription slip (Accord Brand Only) and always keep a month's supply in just in case the pharmacy have to wait to get that brand in.

Kindest wishes to you in your recovery and keep us posted with your sentinel test results.

Hi Lesley

Thank you for your reply, the initial ultrasound showed clear Iymph nodes (I had a lot removed before) and the lump was 6 mm grade 2 invasive Ductal, but I would like the proof soon, but looks like another couple of weeks wait.I have recovered really well and just want to get back to our new normal,and move forward.

Re Hormone therapy I agree I think letting the professionals know if it’s not working is the key and not to struggle on feeling rubbish.I have to say I look at the benefits of taking the drugs and the % is very small for halting recurrence.

After my first cancer I was advised to take Tamoxifen, I refused as they couldn’t prove that it would stop me getting a recurrence, but it may have caused me to menopause in my 20’s and my chances of family would have gone.I thankfully had children and had no issues.

I will try the drugs and see how it goes, and hopefully be one of the ones that can manage well.

Hope you are well and fighting the battle.

Hi G

Yes, it's a hard one with the tablets.  Some ladies lives sound so awful on them, but others like me can actually at times totally forget about having had cancer!  I had my 2 year all clear this month and went on holiday 3 days later (glad I got my mammogram in just before the holiday) and seriously didn't think about it for the whole week. 

I feel that the tablets 'give me protection' even though it was 3-5% benefit of non recurrence and I know in 3 years when I'm supposed to be off them, I will be concerned about losing that protection.  For you, having your children and being caught early now is a good 'trade off' and like you say - who knows if the tablets would have stopped it anyway!  My SIL took anastrozole for 5 years and at year 7 she collapsed.  They discovered it had come back and she died a year later.  Perhaps why I have such concerns about coming off the tablet?

We are all so different aren't we?  But yes, we can't do more than try and see how it goes and hope that you're one of the lucky ones. 

Hi Aberdeen07,

Firstly, welcome to the site, but so sorry you find yourself here.

I had a mastectomy last October, I had a node clearance 3 weeks later as sentinel nodes were affected.

Ive had chemo and now having radiotherapy, it’s certainly a rollercoaster as for me it’s been 9 months of tests, operations and treatments.

I am also taking Letrozole, I’m only two months in and apart from some slight joint pain, I haven’t had any other effects atm. And I’ve had two different brands first was Accord brand, now Sun Pharmaceuticals.

Let us know how it goes with your results x x

Hi Beachwalker

Thank you for replying.

I hope your treatment is going well, last time round I had the radio and chemo it was certainly hard and didn’t get any easier until it was finished.Then you can take a deep breath and start living the new normal.

I will have to wait another couple of weeks which seems a long time(4 in total) I only had to wait a week last time and that was an eternity and hoping that all is clear with the nodes, they sounded very optimistic but until it’s confirmed I’m not celebrating just yet...

Its good to know about the different brands of HT too it’s good to know forewarned and all that!

How long were you on the tablets before it affected you and decided that was it time to change?

I see a lot of posts where people really struggle with the tablets but I guess it depends on their fitness levels/other health issues etc.

Good Luck and I’ll let you know how I get and and very good luck with the radiotherapy.

Gx

Hi 

That’s fantastic news re your clear mammogram.I will never take another clear ( when I get one)for granted again.Ive had so many over the years and just got used to being fine.

I’m off on holiday in a month had booked it ages ago and nearly cancelled but my breast nurse said I should be fine to go so we are off!

Yeah you’re right life is a trade off and I wouldn’t change anything I did all those years ago re treatment and I think this would have happened regardless.Im at prime age for it now ,plus they don’t think it’s a recurrence from original just a new one, but we’re going to check the histology results and compare.

Did you literally know that the tablets were wrong for you quite quickly,or do you try them for a wee while no improvement then back to oncology if you don’t mind me asking?

Sounds like you have lots of  positivity and that’s key to kicking this disease in the gutter.

Lovely to speak and will let you know how my results go when I eventually get them.

G x

Hi ,

Yes my treatment is going ok Thank you. 11/15 rads done YAY.

The waiting is awful isn’t it. I was terrified while I was waiting for ct scans results after my diagnosis. 

It is a long time though isn’t it, you feel like your life is in limbo.

Sorry I didn’t explain about the Letrozole very well. The tablet brand wasn't changed by the Dr, i wasn’t having a problem with it, it’s just the 1st time I collected the prescription it was direct for the oncologist and I picked it up from the hospital. (The Accord brand) which according to a lot of ppl had less SE’s. On repeat prescription and on collection from my chemist the Sun brand were just the ones I got, Luck of the draw.

I started with the aches etc more or less straight away, after a week or two, especially my left knee, which I’ve had aches in before, pre tablets, it just seems to have made it worse, if that makes sense.

It is easing now tho, but I don’t know if that’s because it’s settled down on its own which the oncologist said it usually does after the first couple of months, or whether it’s the complimentary therapies such as Reiki treatment etc I’m having or if I’ve got the balance of exercise and rest right.

Hugs T x

Hi

Good news that your BC nurse suggested you would be fine to go on your holiday.

I was on the Accord brand from the word go and then after 6 months was given a different brand.  Literally within 2 days the side effects hit!  So, luckily I had some Accord left and then put in for a new prescription with a note for "Accord Brand Only" on my prescription slip.  My Dr is really good - seems to do whatever I ask!, 

A couple of month's later, I decided to test whether it was psychosomatic rather than the tablets and took the other brand that I still had in my cupboard - same thing happened 2 days later - my knee was aching, my thumb was hurting - my joints just seemed to be really painful.  So, that was it, I knew it wasn't in my mind - it was definitely the tablets.  The side effects cleared up each time after I took the Accord within 1 day.

I think I am positive 'cause I was lucky that it was caught so early.  It was my first ever mammogram and I was so 'busy', I nearly didn't bother going - big phew! on that one... if anyone mentions to me about not wanting to go because it hurts etc, then I do become quite vocal now as it was pure chance I mentioned it to a friend and she told me that I should definitely go... 

Oddly enough I had 2 different types diagnosed at the same time, so who knows what it is all about!  So even if it comes back the same I guess you won't know if it's a recurrence or a new cancer (I had ER+ gd 2 tumor and ER- Gd 3 DCIS).

I will keep my fingers firmly crossed for your results being the best!