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 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 purple jelly,

just a summary on how I stay sane. Firstly, I think I am a fairly resilient person so that makes staying sane a bit more manageable.

Some people have diabetes, some people have heart disease and the list goes on.....There are few people who go through life without some knock! I have had a good life, good health, great kids, husband, extended family. I have had a great career. I did work hard to rear and educate my kids, pay the mortgage and so on. I am so grateful for all of that.

And then, out of the blue I have stage 4 cancer!!! I look at it as a condition that I will have to live with, just like the diabetic or person with the dodgy heart.  We are blessed that medication is so effective, with minimal disruption to our lives. 
the truth is, nobody knows what tomorrow brings. As the saying goes, you could get killed crossing the road. So just because we are living with cancer does not mean  our life should be defined by it. 
Please don't get me wrong, I have had a few times when I have felt angry and upset. I have cried. I have felt sorry for me and my family, that are burdened with this disease!

What I do find helpful is to keep busy. I have lots of projects. I have taken up painting, the arty type, I get totally engrossed in the colours and techniques (and lack of them)!

I have started to do some home improvements, the other type of painting! I have plans for the garden. I bought a bicycle...... I help out the family with babysitting. I plan to take some foreign holidays, post pandemic.

So have a good cry, moan, or scream because you have good cause. Then park it and get on with life, focus on the positives and live in the moment.  Negative thoughts are evil, they try to pull you down. Don't let them because fear and negativity are worse than any cancer! 
 

your next scan will be fine, though I know you will worry about it.

in the meantime,

Focus on the positives.

Live in the present.

Life is wonderful.
Take care of yourself

NotQuitting.

PS I must check out Penny Brohn too.

 Hi I'm new to this forum and really glad I found it

Diagnosed with Bc stage 2, August 2019. Triple negative in breast and ER positive in underarm.

Surgery in September 2019. Recurrence to underarm in November 2019. Erupted out of skin. ER+ again with element of metaplastic carcinoma.

Radiotherapy and chemo (carboplatin). Lesion disappeared.

April scan showed progression to underarm.

Treatment plan started 11 May 2020- CDK 4-6 verzenio , letrozole and prostap.

Treatment changed to chemo on 6th July 2020 FEC. 5 -6 cycles.

Then Abraxane. Initially response with both and then progression. 4 cycles.

Continued to bandage underarm.

March 2021 right mastectomy and skin lesions to right side removed. Lesion removed showed it was now triple negative no special type  no DCIS no vascular invasion. One close margin.

8 weeks later reoccurrence to underarm. Skin bumps quite hard along surgical scars and mastectomy scar on chest wall. 

CT scan June 2021 showed mets to lungs and liver now. Not there in February 2021 scan.

Was on capcatabine chemo tabs for 1 cycle in May 2021. 

Started Eribulin 15 June 2021. Onc offered palliative care and I got really upset.

Been a tough week digesting it all and thinking how long do I have. Its horrible 

Really needed to hear good stories of how everyone are doing 

Hello Jazzy2019

I'm new to this forum too and am very glad to have found some good news stories. 

I was diagnosed with triple negative BC 2 months ago. No symptoms at all except a lump which even my GP felt she was just being extra cautious in referring me for. Was reassured after my MRI it hadn't spread, was sailing through neo adjuvant chemo, only to be told after a CT two weeks ago it had spread to lung, liver and spine. 
 

I should say that, so far, my EC chemo is working very well. I forget the good news. 
 

We're so shocked, but hearing these stories makes me feel less isolated. 
 

Keep going lovely ladies
 

Hi Kellog and Jazzy,

I too am triple negative first diagnosed in 2007, the usual treatment followed, surgery, chemo and radiotherapy. I was told at the time that triple negative was the most aggressive type of breast cancer and spent three fruitless years anxious and afraid it would come back. Ten years on ..... ten years! I got a local recurrence with no sign of spread, it was removed and no further treatment followed. 
Earlier this year it was discovered by chance that I had lung and liver mets (breathing difficulties having been put down to atrial fibrillation). It was devastating. 8 long weeks after diagnosis waiting for a biopsy to confirm the type of cancer, I saw my oncologist who was pretty optimistic and started me on Abraxane. It has helped only marginally so I am moving on to Gemcitabine and Carboplatin.

In the meantime MRI scans have shown up two tiny brain tumours which are about to be zapped with stereotactic radiosurgery. Hopefully that will be the end of them but I'm pretty scared about the process as my head will be pinned down to the table for 40 minutes while they do it.
 

Until you two ladies posted I was feeling very isolated as triple negative is so different to the hormone receptive breast cancers and the treatment is not the same.

I was very positive at the outset, determined to live with it not die from it. This is proving more difficult than I imagined due to side effects, Covid, and now due to brain mets I've had to surrender my driving licence.
 

PS Kellog, what's EC chemo?

Best wishes to all 

Hi Kellog and Jazzy,

I too am triple negative first diagnosed in 2007, the usual treatment followed, surgery, chemo and radiotherapy. I was told at the time that triple negative was the most aggressive type of breast cancer and spent three fruitless years anxious and afraid it would come back. Ten years on ..... ten years! I got a local recurrence with no sign of spread, it was removed and no further treatment followed. 
Earlier this year it was discovered by chance that I had lung and liver mets (breathing difficulties having been put down to atrial fibrillation). It was devastating. 8 long weeks after diagnosis waiting for a biopsy to confirm the type of cancer, I saw my oncologist who was pretty optimistic and started me on Abraxane. It has helped only marginally so I am moving on to Gemcitabine and Carboplatin.

In the meantime MRI scans have shown up two tiny brain tumours which are about to be zapped with stereotactic radiosurgery. Hopefully that will be the end of them but I'm pretty scared about the process as my head will be pinned down to the table for 40 minutes while they do it.
 

Until you two ladies posted I was feeling very isolated as triple negative is so different to the hormone receptive breast cancers and the treatment is not the same.

I was very positive at the outset, determined to live with it not die from it. This is proving more difficult than I imagined due to side effects, Covid, and now due to brain mets I've had to surrender my driving licence.
 

PS Kellog, what's EC chemo?

Best wishes to all 

Hi Dotty

I was very positive at the start, in fact was determined to be the example of someone who beat cancer and lived a better life because of the new perspective I had. So the change has knocked me for six and I can imagine how you feel. 

Easy for me to say, as I don't get scared by the mri/ct itself (just the results ) but if the brain procedure is positive action, try to focus on that, rather than being strapped down. Belly breathing helps. I'm seeing a psychologist at Maggie's cancer centre which is really helping. 

Dotty, EC is Epirubicin and Cyclophosphamide

I am really hopeful that I can get back to the positive mentality I had at the start of this, but bearing in mind it's only been two months since initial diagnosis, I have to accept it will take time. 
 

I have decisions to make, do I give up (remote) working? I love the people I work with, and if, as I hope to do, this becomes something I live with for some time, what will be my purpose without it? I have three gorgeous children, all school age so no longer looking after little, little ones. One knows everything, the younger ones don't. Do I tell them? If so when? 
 

Sorry, a bit off topic, but my head is whirling. 
 

Best wishes ladies 

Thanks Kellog,

I don't want anyone to be going through this but it is good to feel I'm not alone with triple negative. I've been directed to a number of Facebook pages dedicated to secondary triple negative victims but I hate Facebook so I haven't been there but you might find it helpful. With young children you must be quite young yourself so there may be ladies on FB that have dealt with the same dilemmas you face. I started with all this 13 years ago, just as I retired. (I'm 69 physically but 45 in my head and damn well not ready to die) so I'm not the best person to advise. Remember however that children pick up on atmosphere very quickly and will be aware of your change in moods and tiredness etc so you probably need to tell them something.

Its not the radiotherapy itself I'm scared of or even the side effects. Because of my lungs and a nose that blocks  easily I'm worried that I'll panic about breathing with my face in a mask clamped to the table. I have relaxation techniques which I will definitely use and I will focus on it being a very positive treatment. Fear of the unknown I suppose.

It's interesting that we're on different kinds of chemo for the same condition. I wonder how they decide. I have a lovely lady oncologist, I hope you're as lucky. I'll ask her.

As for positivity I think it waxes and wanes. It's being kind to yourself to allow your negative feelings to have free reign now and again. I had a jolly good cry last night and feel better for it. I also think that if you can have a whole day without being cancer conscious, by which I mean no reading about it, anywhere, online or in books, not talking about it with anyone however well meaning and filling it with distractions such as work, the children's activities, a film, a social event (hard at the moment I know, but my WI met in the garden and it really took me out of myself) that really helps the psychae even if it doesn't make the cancer go away. That's my take on it anyway and we all have to find our own path.

Keep posting and let us know how it goes.

Dotty x

Thanks Dotty, 

The boys know I have cancer, just not that it's spread. Perhaps I'm rushing into things. My Mum says once it's said, it can't be unsaid. 
 

I think the choice of chemo was because their aim was curative at first. I understand EC is particularly toxic, but as a fit 44 year old, the oncologist thinks I can tolerate it. 
 

Your ideas on positivity are really reassuring. It's early days still, I've only told a few friends the full extent of the prognosis, as I really don't want to be the latest topic of conversation. Perhaps when more people know, the initial awkwardness will settle down and I can feel more normal. 
 

Thank you again,

 Kellogg x
 

Hi Kellog,

It's good you've told the boys so they know you're having treatment and there'll be times when you're not well or you're usual self. My boys were 27and 25 when I was first diagnosed and I played it down a lot but then it was just a primary. " Just," what am I saying!

My reaction all those years ago was weird, I didn't want anyone to know bar my immediate family and friends. I quite literally hid myself away. My Mum had breast cancer so I knew I could be a candidate so I lead what I believe was a healthy lifestyle. I didn't smoke or drink, I breast fed my babies and watched my weight and my work made sure I got enough exercise. So when I was diagnosed as part of the screening programme I felt as if in some way I'd failed. I was receiving treatment some way from home so unlikely to bump into anyone I knew. I even shopped in a new supermarket. Madness. I really didn't understand it myself.

This time I have been quite upfront with all my family and friends and the support I'm getting is amazing and heartwarming. Even folk who are really more acquaintances than friends have been lovely. I read a book recently called the Cancer Whisperer by a lady who is surviving against the odds. She's a bit intense and I had to read it in small chunks but something she says which I think is good advice is, be specific with your friends, they want to help and support but often don't know how, so tell them! If you need some shopping or a lift, someone to take the boys somewhere or just a social get together let them know. In my experience someone will step up willingly.

A word of caution though some people can't cope and will fade away even if you thought they were good friends. That's Ok, because it's their problem not yours and you don't need to add guilt to your own struggles.

All that being said it's your journey and only you can choose which path to take.

I've taken my first lot of steroids prior to my stereotactic radiosurgery this afternoon so I'm hoping it'll put a spring in my step by lunchtime!

Chin up.

Dotty x

Thank you Dotty for all the advice. 

Good luck for this afternoon

Please let me/us know how it all goes  

Kellogg x

Thanks Jazzy.

I'm really glad to hear you've had the good news stories from the forum. Is it Inspire.com and then add your particular condition? 
 

Your vision board sounds good, though, looking past tomorrow at the moment, scares me!

xx
 

Yes www.inspire.com

There is a breast cancer forum you can join

But there is also an advanced breast care one too which us helpful for those that are stage 4

Xx

Hi Kellog and Jazzy who I'm sure is following,

An update on this afternoons trial by stereotactic radiosurgery

Well that wasn't a nice experience but I got through it and survived. The radiographers were absolutely marvellous, patient and understanding. Oh that all the hospital staff were like that. The nurses in the chemo suite should go down and take lessons. To help with the side effects they give you massive doses of steroids on a sliding scale. Today I took two separate lots of 6mgs so 12 mgs. Then I went to the GP with a sore ear and she prescribed an antibiotic ear spray with added steroid. I also showed her a nasty inflamed area on my chest and she gave me steroid cream with added antibiotic.

I should be bouncing off the ceiling by bedtime unfortunately there isn't an emoji for a Trampoline 

Dotty (named in honour of my Mum)

Really glad to hear it went, I'd say well, but you know what I mean! Not good to hear the chemo nurses are not great. I've been lucky so far. 
 

I get that energiser bunny feeling when I'm on the steroids. Try and get loads organised on those days! 
 

Fingers crossed for some sleep tonight

Xx