Hi,

Survival rates for breast cancer are fairly high in comparison to some other types of cancer. My own cancer has pretty lousy survival rates. These stats off the CRUK website may help ... www.cancerresearchuk.org/.../common-cancers-compared

Traditionally 5 years has been held up as statistically significant and as a result there's lots of stuff on the Internet about 5 year survival rates - the stats above cover 10 years too. 

My oncologist told me that the longer people survive the more likely they are to survive a long time. This sounds illogical at first, but if you put all the patients on a graph, some die within 12 months of diagnosis, others within 5 years (if they survive the first year) but an awful lot who make it to five years are still around after ten years. I hope this makes sense.

Best wishes

Dave

HI Davek

the link you’ve provided is very interesting but refers to Brest Cancer and you’re right survival rates for Breast Cancer are very good. My Mother In Law, for example lived for forty years after her diagnosis. (She sadly died within two months of her diagnosis with ovarian cancer).  

Sadly, this post is about the very different animal; Secondary Breast Cancer. Average survival rates for this appear to be at 3.5 years according to one source I recently saw on the Internet. It appears to depend on what type of Breast Cancer the person has. It’s nearly always good to aim high and most of us, However we are effected by cancer are aiming for that. I hope you manage to be a record breaker for your own cancer and feel as well as you can. 

Bryony

Carer to partner with Secondary Breast Cancer  

Hi Daisy1257,

I did not have any symptoms at all.... just feeling a bit tired now and then, but nothing else. It was a blood test that showed low blood count that started investigations. So it was a big shock that cancer had progresses to lymph nodes and spine. 
oncologist put me on letrozole and Ribo. I will be starting bone strengthening treatment in next couple of weeks too. I am feeling fine, actually the tiredness is gone since starting letrozole, which oncologist suggested might happen.

apart from initial shock, I have been mainly very positive..... and this forum has strengthened that mindset. I do get the odd bout of sadness of course but we need to think positive. Breast cancer is very well researched compared to other types and they are making new and better treatments all the time. 
the fact that I will not be having chemo, surgery or radium is good in one sense, but people look at you when you say it is incurable. But as my cancer nurse says, it needs to be looked at as a critical illness, so that is where I'm at!

already oncologist said my lymph nodes are shrinking, so I'm sure your back pain will improve too with treatment. 
we need to live each day, as a wise woman once said 'who promised us a tomorrow?'

Hi NotQuitting

Yes I agree with you about the shock, it knocked me for six, especially as before Xmas I was totally fine and probably the fittest I have been as I worked out a lot during lock down. I too have been really positive and all of my family are too which is great. I've read some encouraging posts on ribociclib which has given me a boost. I also have two young girls, 5 and 7 so I have to stay positve for them, I'm not going anywhere!

I know there is no cure but I've read so many posts where women have remained stable for long periods of time, especially with hormone treatment. That is what I am aiming for.

You mentioned there is shrinkage of the lymph nodes, is it the ribo and letrozole that has done this or have you had other treatment.??

I hope you continue to do well on this treatment, stay positive and take care. 

Hi Daisy1257,

My first diagnosis was made on 30 March 2021, and oncologist put me on Letrozole on that day. Two and half weeks later, I went back for checkup, and by then I was feeling better and oncologist checked lymph node under my arm,  which she said had improved.... even in that short time. 
I am on Ribo for the past week, and will have bloods and ECG done next week by Nova nurse. I have had no other treatment. I was told that it was incurable, therefore I would not benefit from chemo, radium or surgery. Perhaps chemo may be necessary down the line if hormone treatment stops working. Hopefully that will not be for many years!

I will be getting bone strengthening treatment too, which negates against fractures, or progression of cancer also.

Oncologist told me that they have found that by adding Ribo to the Letrozole, it makes Letrozole more effective and also helps Letrozole work for longer. If I have side effects from Ribo, oncologist will reduce dose to find what suits me. It is important that we have good quality of life too. So far, so good with both meds, but it is early days yet!

If I had not had blood test last November and investigated the cause of low haemoglobin,  I still would not know I had cancer! It is a sneaky disease!!!!

I resent being a cancer patient..... I would prefer to be rid of it, but such is life, and perhaps having this illness will help us focus on what is important in life, and not worry about trivial things. We must live in the NOW and not worry about tomorrow. 

I hope this answers your questions and dismisses some of the fear of it all.

Here's to many years of chats! 

Thanks for sharing the info about the effectiveness of ribo and letrozole together, my oncologist hasn't really given me any details along those lines. It was just a case of these are the hormone drugs you will go on. He put me on ribo first for 2 cycles then started zoladex. The zoladex can cause tumour flare which is why he has staged the drugs. I only started letrozole last week, originally I was put on tamoxifen.

I'm the same I resent bring a cancer patient but life is what it is and we have to live it the best we can. I am determined to not let this disease dictate my life, I will learn to live with it. 

I can't believe yours was picked up on a blood test and you had no symptoms, it just goes to show its always worth checking things out.

Yes definitely, here's to many years of chats.

I will keep you posted on progress, it sounds like you are handling things really well but I'm here for support if you ever need a rant!! 

Hi NotQuitting

I had my first CT scan results yesterday after starting treatment and it was really good news!!!

They said I have had a partial response to treatment, the lesions in my liver have all started to shrink, they have reduced by 8-12mm each.

The CA marker in the blood has also dropped dramatically. They said they would have been happy with a stable result but the fact it is shrinking is even better.

It's a long road but so nice to hear positive news following diagnoses. There is hope. X

Hi Daisy1257

That is fantastic news!

We are so lucky to be living in 2021, where we have such knowledge and progress on cancer treatments. This Letrozole/ Ribo combination is relatively new and seems to be very effective.

Reading posts from people like Mare and Mammacasse is so encouraging, I want to thank them for their stories, they are sparks of light amid  very bleak reading elsewhere. 
I start bone strengthening treatment next week. I was put off Ribo for week 3 as my bloods were low, but I will be back on it again soon I expect. I was told this can happen and I may have to take breaks or go on reduced dose until they determine what suits me. 
wishing you continued success on treatment.

not quitting

Yes the treatments and options now are so much better. I was so relieved to know it is doing some good.  I was only put on letrozole about a week before my scan so I am hoping it will continue to do more good things by my next scan.

What bone strengthener will you be on? I'm on Denosaumaub, I have had 2 so far, I had one yesterday along with my zoladex injection.

Yes I have heard about low white blood cells with ribociclib, it seems to be common. I hope you get back on it soon.

Take care

Hi Daisy1257,

I had my first bone strengthening treatment today. It was Zometa which is a class of bisphosphonates. I will have it every 3 months.
My haemoglobin was back up and oncologist said lymph node was greatly reduced again, which is very positive as both suggest Letrozole is working. 
As my white blood cells are not still recovered, I will stay off Ribo til I have another blood test next week and then will have reduced dose of 400mg per day and see how that suits..... there is always period of adjustment at the beginning til my body gets used to it and see what suits me best.

I hope you continue to have good results from your treatment. Thank God it is all looking very positive...

Best wishes,

Notquitting

So glad I found this thread - I'm nine months on Denosumab, Palbociclib , Letrozole and mets are shrinking. Have another scan in a couple of weeks and hoping again for a good outcome. Have found online help at Penny Brohn fabulous ! What are people doing to keep sane ? 

Hi NotQuitting

I'm glad you have had your 1st bone strengthener. Great news about the lymph node and your haemoglobin.

I hope you get back on the Ribociclib soon, I've seen loads of posts where people  have had a reduced dose and still had excellent results. As you say it's important to find what suits you.

My next scan is not until August now so I think I just need to put this to the back of mind and keep everything crossed that the medication continues to work.

Hi PurpleJelly

Great news that you are seeing positive results. Good luck with your next scan!

Yes I have used a nutrition counsellor at Penny Brohn and it was well worth it.

Where are your secondaries?

To be honest I just take each day as it comes and try to enjoy it as much as I can. I do think about my cancer all the time but I'm getting better at having a positive mind. Especially when I read encouraging posts about the medication we are on.

X

Hi NotQuitting

I'm glad you have had your 1st bone strengthener. Great news about the lymph node and your haemoglobin.

I hope you get back on the Ribociclib soon, I've seen loads of posts where people  have had a reduced dose and still had excellent results. As you say it's important to find what suits you.

My next scan is not until August now so I think I just need to put this to the back of mind and keep everything crossed that the medication continues to work.

Hi PurpleJelly

Great news that you are seeing positive results. Good luck with your next scan!

Yes I have used a nutrition counsellor at Penny Brohn and it was well worth it.

Where are your secondaries?

To be honest I just take each day as it comes and try to enjoy it as much as I can. I do think about my cancer all the time but I'm getting better at having a positive mind. Especially when I read encouraging posts about the medication we are on.

X