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  

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
 

Hi Jazzy, 

So far we appear to be a select band of 3. But it is good to get responses I agree. So frustrating to bare your soul and not get anything back. I shall investigate inspire. May I suggest a website too

http://yestolife.org.uk
 

A charity that has lots to offer by way of financial help, complementary therapies and psychological support. Like everywhere they are struggling a bit as a result of Covid shutdowns etc. but it's worth a look.

Dotty xx

Thank you Dotty.

Sending you all love x

Hi Jazzy2019, 

We just noticed that the forum you've suggested is based in America and as such the treatment and advice given can be very different.

If you and [@Kellogg]‍ are looking for a UK based community where you can connect with other ladies with stage 4 breast cancer it may be worth having a look at Breast Cancer Now. This charity has trusted information and an experienced team of moderators. They also have a helpline you can contact if you want/need to talk things through at any point.

I hope this helps and I wish you both the very best on this journey.

Kind regards,

Steph, Cancer Chat Moderator

Thank you.

Yes it is America based but there are ladies on there from all over including the UK. There's a lady on there who goes by the name of best bird, and has issued a book pdf form free of charge with information and various advices.

Hi,

My sister had a biopsy breast done. Phone call today to ask her to come in with someone. I am that someone and feeling devastated. 

Your response and great spirit spoke to me here thats why i have reached out. 

Hi everyone 

I hope everyone is still doing well. I just wondered if anyone has experience with the CA15-3 Marker. 

At diagnosis mine were 1200 but started treatment and they went down to 600. In Sept they were 562 but then in Oct they have crept up to 598.  I know its not much of an increase but just wondered if this means my cancer is on the move??? I have a scan early November but worried sick now about this marker.

I have SBC in spine, pelvis and liver.

Thanks 

Hi everyone, 

I am reaching out for some advise and support.  I have just been diagnosed with stage 4 breast cancer (invasive lobular) and at present the metastatic deposits seem to be confined to my spine. 

I had 2 lumps.  1 in my RT breast and 1 in my LT breast. I wasn't ignoring them. I had been visiting breast screening for the RT breast lump for 3 years and kept being told it was just a thickening and not a lump and not to worry. It was only after the left lump appeared a biopsy was taken and it was confirmed as lobular carcinoma.  I was then offered an MRI which confirmed the RT side was also suspicious and a biopsy was taken (which is also lobular). 

I had surgery to both lumps and nodes on the 12th October 2021.  The results came back and the margins weren't clear and 2 out of 3 nodes on LT and 1 out of 2 nodes on RT were involved. 

They said it was now complicated and sent me for a staging scan and to see an Oncologist. They suggested I would need chemo and radiotherapy. 

The Oncology consultant was lovely, but explained my staging scan showed multiple mets in my spine and for completeness I now need a bone scan to see if it's in any other bones. He said the median survival for my current diagnosis would be 3-5years and he mentioned bone strengthening drugs.  However, chemo and radiotherapy do not seem to be an option anymore.

I want to be treated as actively as possible and am researching treatment options. 

I read some very inspiring comments in this thread and just wondered if anyone would be willing to share any experiences they have had of possible treatments or things that have helped or worked for them.

I hope you are all keeping well.

Thank you

Jane 

Hi everyone, 

I am reaching out for some advise and support.  I have just been diagnosed with stage 4 breast cancer (invasive lobular) and at present the metastatic deposits seem to be confined to my spine. 

I had 2 lumps.  1 in my RT breast and 1 in my LT breast. I wasn't ignoring them. I had been visiting breast screening for the RT breast lump for 3 years and kept being told it was just a thickening and not a lump and not to worry. It was only after the left lump appeared a biopsy was taken and it was confirmed as lobular carcinoma.  I was then offered an MRI which confirmed the RT side was also suspicious and a biopsy was taken (which is also lobular). 

I had surgery to both lumps and nodes on the 12th October 2021.  The results came back and the margins weren't clear and 2 out of 3 nodes on LT and 1 out of 2 nodes on RT were involved. 

They said it was now complicated and sent me for a staging scan and to see an Oncologist. They suggested I would need chemo and radiotherapy. 

The Oncology consultant was lovely, but explained my staging scan showed multiple mets in my spine and for completeness I now need a bone scan to see if it's in any other bones. He said the median survival for my current diagnosis would be 3-5years and he mentioned bone strengthening drugs.  However, chemo and radiotherapy do not seem to be an option anymore.

I want to be treated as actively as possible and am researching treatment options. 

I read some very inspiring comments in this thread and just wondered if anyone would be willing to share any experiences they have had of possible treatments or things that have helped or worked for them.

I hope you are all keeping well.

Thank you

Jane 

Hi Jane

Sorry to hear about your diagnosis. I have secondaries in spine, liver and little in lungs. Mine is ER+ do have been put on hormone treatment, Ribociclib, letrozole and zoladex. I also have Denosaumaub every 4 weeks to strengthen bones.

What type is yours, have they said?

Back in March I was in a bad place as the cancer had weakened my spine and caused 4 fractures. I could barely walk. They have now healed and 2 scans so far have show big improvements. Side effects for me are minimal so hoping to stay on these drugs as long as I can.

I have found exercise helps me deal with the anxiety around scan time and just in general gives me a boost. I also drink lots of water every day. 

Lots of treatment options available and new drugs coming out all the time.

X

Thank you for sharing that Daisy. 

You have made me smile for the first time in days and have given me some hope ️

Do you mind me asking which hospital is treating you?

And when you were first diagnosed? 

I ask as I live in Devon and my local hospital is very small and although very lovely, I don't want to miss any opportunity because of our location. 

It is all very new for me at the moment and I'm still really struggling to cope with my diagnosis.  I know how important it is to stay strong and be positive. However, it just feels devestating at the moment and I find myself feeling scared and overwhelmed most of the time.

Thank you for the advice about exercise and diet.  I will give it a go

Mine is Invasive lobular cancer, ER+ and her2-  and so far the secondaries seem to be confined to my spine. 

However, the CT scan was only of my chest and pelvis, so I am currently waiting for a bone scan to see if it's in my neck, skull, arms, legs etc. 

The consultant did mention zolodex, letrozole, palbociclib and Tamoxifen but they haven't started anything yet. 

I will ask about the other drugs you mentioned when I go back (thank you). 

They didn't get it all the tumour out with my recent breast surgery, which is really worrying me. I would really like them to go back and do a bilateral mastectomy now (just to give me the best chance) but they don't seem keen to do that?  I wondered if anyone else had any experience with this issue?

Thank you so much for you reply.  It's been a Ray of hope xx

 X

Hi Jane

I am based in North Wales.  I was diagnosed in March 2021. Complete shock and out of the blue. I started with back pain on boxing day, 6 weeks later I could hardly walk. Originally I was treated for pulled muscle then slipped disc. Then I went to A&E as pain was excruciating, that's when they found it. No lump on breast, one side just slightly firmer than the other.

I am 37 with two young children who are 6 and 8, I'm absolutely devastated.

Your right it is devastating.  I have sad days now but not as many as I did initially. I'm putting my faith in science. Ribociclib and Palbciclib are relatively new drugs which came out in 2016. Alot of women are still on these drugs from when the trials started and are still stable and living relatively normal lives.  This gives me hope that other drugs will come following these. 

Palbciclib is like a sister drug to the one I'm on Ribociclib. I think you mainly go on Palbo if you just have bone mets but Ribo if you have it in liver or lungs.

My oncologist has said radiation will only be used if I'm in pain with my back. At the moment I'm not and mobility is really good. I think chemo comes later down the line when they have exhausted all of the hormone options.

There are also two other forums which I fiine really good, one is on Breast Cancer Now and the other is the Macmillan Secondary Breast Cancer forum. This forum is good but not very active. The breast cancer now forum is very active of lots of ladies on there who are on Palbo and stable!

Also on the macmillan forum in the chat section they have started a positive stories thread for stage 4. This will give you a lift.

I have been told surgery is not an option once breast cancer has spread. But I have read about women who have responded well to treatment and ended up with no evidence of disease, then the surgery has come after that.  I'm aiming for no evidence of disease!

Do you have family? And good support?

Anyway let me know what treatment they put you on and feel free to fire questions, I will help where I can.

Take care

Daisy

Hi Daisy 1257,

I'm just checking in with you as we were diagnosed around same time and on the same path since last March 2021.

How are you doing? I had scans couple of days ago and all is good. I'm still on Letrozole. No side effects, except some hair thinning. ( I'm using Nioxin shampoo, conditioner and serum for that and it has improved)

I HAVE CHANGED FROM Ribosiclib to Palbosiclib, 100mg, which is suiting me better. Ribo was lowering white blood cells.

I will now have check up every 3 months, instead of every month, which is progress. Oncologist is pleased with my scans and I'm feeling fine. 

Let me know how you are getting on. 

Best wishes, 

Not Quitting

Hi Not Quitting

Lovely to hear from you and I am glad to hear you are doing well. 

I have now been moved onto the Cape tablet. In my Jan 22 scan there was growth in the liver.  Originally they put me on weekly paclitaxel low dose but my markers were still increasing so I have now been moved to Cape. I've only been on it 2 weeks so hope it works well for me.

It's strange as physically I am the best I've been since diagnosis and I feel really well. Although my markers are the highest they have ever been.  It doesn't make sense. I had another scan a few weeks ago and that was stable so hopefully at the next one I might get reduction.

I have been working hard on diet and also do weekly infra red sauna and weekly hyperbaric oxygen.

Check up every 3 months sounds good - it's nice when you don't have too many appointments isn't it!!

Keep in touch

Daisy

X

Hi Jane @crazy_dog_lady

I was diagnosed with ER/PR+ HR- lobular cancer in summer 2021.  In July 2021 I had a mastectomy on my right breast and 3 lymph nodes removed then a full axillary node clearance in September 2021. In total 3 of 15 nodes had cancer cells. A few scans later (gamma ray, CT PET) and a Bone Biopsy in my pelvis (that's a story in itself) and I was diagnosed with metatastic stage 4 breast cancer. It was in my spine and left and right pelvis. At one stage they thought it was in my liver too but an MRI scan proved it not to be the case.

I am on Letroxole and Adcal D3 every day; Palbociclib 3 weeks on, 1 week off (max dose) and had 2 injections so far of Denosumab (1 per month for maybe a year). I am tolerating the meds extremely well. I think my hair is thinning. It was before all of this and then stopped but I think it's started again. I think the Densumab may be having a strange effect on my pelvis area but I am yet to discuss that with my Oncologist. I had chest wall radiotherapy for 3 weeks in March 2022. The process was fine but the skin burn etc for 3 weeks afterwards kept me bandaged up and working from home. I have just had 2 more scans on bones and torso and await the results.

I wanted to tell you about SABR radiotherpay, sometimes referred to as Cyber Knife. I was told I could not have this on the NHS but I do have private medical at the moment so I got it sorted through that in February 2022. It is pinpoint radiotherapy that I had on the spine and the two pelvis spots. Fingers crossed the bone scan will show improvement in those areas as a result. I am 54 and I am not in pain so most of the time I am in very good spirits and continue to plan things to look forward to as before. I am sorting my pension so I can retire at 55 to enjoy time with my family for however many years I can live with this for. Hopefully quite a few, because as others have said, you just don't know. These drugs have only been in use a few years.

I live in Warwickshire. The small hospital near me is great. I had my surgeries and some scans there and then there is Coventry wich is a big hospital where I went for radiotherpay, the bone biopsy and other scans. have also used Birmngham for the privtae stuff. I am very thankful to have these facilities relatively close to me and also to have flexibility in my office job.

My advice is ask about SABR, try to live your life as normally as possible and don't dwell on things. Do the things you enjoy. Even moreso now.

Tx