Blondie - 17 years on

[NarniaGirl]

Hi Kelliebear, I'm so sorry to hear what you're going through. I spotted your post on the 'latest posts' tab but I see it is part of a string of posts so I am wondering if you might get more replies if you posted it again under its own heading? Both my aunt and I have breast cancer. Mine has hopefully been treated but my aunt is too unwell to have an op. She was a nurse all her life, retired now, and is also trying to cut down oestrogen like foods in her diet. She swears by the books by Jane Plant, a scientist who lived for many many years after her diagnosis. She looked at the diets of countries where breast cancer is less common and devised a diet that cuts out many foods that she thought 'fed' cancer. I just checked and there are various books by her on Amazon and some news articles about her too. The problem is there are so many weird and wonderful claims it is hard to know which have some science behind them and which ones are just trying to cash in on it. I personally cannot vouch for the Jane Plant books because I haven't read them yet but I just wanted to pass on my aunt's enthusiasm for them. If you re-posted your query under another tab you might get seen by other forum members with more experience and advice. Maybe Macmillan could send you one of their recipe books? I remember being given one when I was in hospital as there was a table there with Macmillan resources, and the book was all about simple recipes to have  good well-balanced nutrition when cancer and its treatments can make you lose weight and have a poor appetite. The Breast Cancer Now nurses are also really great to talk to on the phone. Some telephone advice lines can be really general and vague but I've found the Breast Cancer Now nurses really listen to your particular circumstances, have loads of knowledge and experience, ask you questions that help you think things through, offer good advice about the physical and emotional side of things, and know how to point you on to further help. I hope you get all the help and support you deserve and that it makes a big difference to you and your family x

[kelliebear]

I was diagnosed with secondary breast cancer on the 5th May 2020 which came as a total shock. 

I was diagnosed with breast cancer in December 2015 and February 2016 I had a full mastectomy and was put on Tamoxifen but never received any other treatment and was told after the operation that they had got it all. a year after the mastectomy I had breast reconstruction but I always had problems with the implant and a lot of discomfort then last year the discomfort got worse under my ribs and I told my hospital that I felt uncomfortable with my breast implant and was having pain but I was brushed off. this year I was losing weight and the pain was getting worse so I went to my GP who sent me to my local hospital who ran tests and a biopsy as the found a 5cm lesion on my liver which I have been told is secondary breast cancer the said it is metastatic invasive ductal carcinoma G1 and with treatment I could live 2 to 4 years.

I asked how long is the longest they have known someone to live with this and they said 4 years. I was left completely devastated. I was told that my cancer broke away from the initial site in my breast and went through my blood stream and attached itself to my liver. my New metastatic ER positive /HER2 negative breast cancer. in February when I had all the scans the said that the cancer looked like the liver is the single site of the disease. I am waiting for results of a bone scan and CT scan I had a few days ago and I am praying it comes back clear. they said if it came back clear then they would discuss the possibility of resection of the liver met. but I was left confused as when I said would I have longer to live if the cancer has not spread and you could remove the cancer and part of my liver. they said no still 2 to 4 years. I was left confused and in total shock. then I come across this site that has given me some hope seeing yourself and others liver 17 years and 10 years ect.  I do not understand my cancer and have leaning difficulties and struggle to take stuff in. I have been told that my cancer is an oestrogen cancer or it feeds of oestrogen and I have started Palbociclib and Goserelin and Letrozole. I have been advised by my family that I must avoid foods with oestrogen in. but that is hard to do as most foods contain oestrogen. my partner has been making me broths which have pearl barley in it and he has been making me home made sups with veg as the weight has dropped of me as I have lost a stone and a half in 3 months and has bought be loads of ANTIOXIDANT NUT MIX which contain Almonds pumking seeds. cashew nuts and brazil nuts, walnuts coji berries. but I have now been told that pearl barley and the nuts all contain oestrogen and I should avoid nuts pearl barley and wheat and meats and white bread and sweetcorn ect as it helps feed the cancer.  I am left terrified what I can eat and what foods I must avoid. my head is all over the place and I am terrified dying and leaving my children as I have 6 kids and my youngest are 13 and 14 and disabled and they need there mum. this site is giving me hope of living longer then the 2 to 4 years I have been told I have. any advise of foods to eat or avoid would be very much appreciated. 

[Beebs]

Hi Blondie

"Is that enough information" you asked? I can assure you it is... exceeding my expectations, that's for sure! Thank you for being so generous - I'm in the process of getting hold of the book, then movie to follow. Can't wait to read about the journey of this drug.

Sorry for replying late to your post - I have been a little under the weather, but back on form now😊 even though I forgot to numb my tummy before zoladex yesterday - OMG, didn't know it hurt that so bad....never again will I forget to do that.

All the very best Blondie and take very good care.

B

[GinaK]

Hi I was just wondering what your ER PRand HER 2 status is you have done remarkably well good for you 

[Ndw32548]

Thanks Blondie. Very inspiring and continued good luck to you. Thank goodness for the Herceptin/ pertozomab combo

[blondie]

Hi Beebs

I was early 50s when my cancer returned and had spread to liver and bone - is that enough information?

i was so lucky that I managed to last 9 years before reoccurrence. Obviously I am HER2 but when I was first diagnosed we knew some women died within about 5 years but not why. The discovery of HER2 status and the development of Herceptin in the US for secondary BC, was going on throughout the late 80s and 90s and was only approved by NICE in the UK in 2002!! You can see just how lucky (relatively!) I have been. 
The amazing story of the development of Herceptin (the luck, the dedication etc) is in a book:
Her2 The Making of Herceptin a revolutionary treatment for Breast Cancer by Robert Bazell (1998 Random House NY)

and this has been made into a film:

Living Proof (2008) Available on Amazon 

[blondie]

Hi lollipop

i was diagnosed with mets in liver (specks/spots throughout the liver) and a spot on my sternum. After FEC I had a reoccurrence as I had a large and fast growing growth. Taxotere and Herceptin followed and the rest is history. 
As for diet - I became a vegetarian (I eat fish) aged 32 (BC diagnosed aged 44) and from diagnosis have cut back on my dairy intake. When I say cut down I mean that I don’t drink milk (I don’t like it) and only eat ice cream, cream etc occasionally. I can’t say I am strict about any of it but I do try to eat well,  lots of veg and fruit. 
Hope that helps. 
blondie

[Beebs]

Hi Nicky 

Thanks for sharing - just what newly diagnosed people need to hear! As you rightly say, the stats are out of date - but they do hit you right between the eyes when all you really want/need is positive info. 

Wishing you & your friend well 🙂 and many many more years of "stable", "NEAD" & or "NED" 🥰

B

[lollypop84]

Hi ladies, 

ive had a terrible week I’ve been in a really bad place and had bad anxiety all week and I’ve been in tears I hate feeling like I do. I have a scan coming up soon and that’s making me so nervous as it’s my first since starting this treatment so it’s a big one for me. I also have bloods next week for my 3rd cycle of meds and last time my wbc was so low I had it delayed so I’m worried about that to. Sorry I’ve been a right moaning Minnie!! It’s nice to read positive stories though that always helps. I hope your all well and coping in this horrible time we’re all in xx

[nicky08]

Well done Blondie, it really does help to know ladies are out there living with secondary BC for so long. I am 12 years post secondary diagnosis but unlike you have not been on herceptin therefore my treatments have swapped and changed over the years. I do have a friend (on herceptin) who is also about 17, or more, years post secondary diagnosis and she has also commented on why she is not part of a research project as to why she has lived so long.  Her only complication now is from long term use of bone strengtheners, something when she was first given pamidronate there was no research about (and still isn't) to be honest back then no one was expecting any secondary BC patient to survive beyond the 2 years - statistics that are still being quoted and woefully out of date.

Good luck with everything and keep safe

Nicky x

[Beebs]

Hi Lollipop

So sorry to hear you are struggling - this lock down makes it worse! I was diagnosed just a little before you and started my treatment in Jan, I'm on my 4th cycle of meds and am doing ok (since does reduction after 1st cycle) my 

MRI showed that Mets are stable and 2 have shrunk a little and I can physically feel this as the movement I have in my right arm is much better. I can't tell you not to worry because I have my moments plenty of times, but have faith in medicine - we HAVE to😞

We need to help ourselves too by exercising to keep our body fit (long walks etc not necessarily hard core gym stuff) look at Chloe Ting work outs online, eat well (BUT I have the chocolates/cakes sometimes if I want it!) I figured the more I keep my body fit the more it can tolerate the meds, especially if you have other medical conditions! As for supplements, I have not taken any only because I'm scared of the fact they may interfere with what I'm taking - but I juice (sometimes - not just fruits (you will give yourself diabetes!!!) add things like carrots, celery, spinach (or kale), raw beetroot (yuk) ginger (small piece) etc to the fruit or no fruit at all!

By the way, I'm no expert L xx I just wanted to reach out to you xx

B

[Beebs]

Blondie - long may NED continue 🤞 you made my day - I'm going to make a pavlova full of cream and berry as a celebration of your amazeballs news (never made one b4😉) worse things to do during lockdown!

What hope you have given me (& lollipop 🥰 too) being newbies to this unpopular club! You are so right - why isn't there more research into stage 4 survivors, when I feel down and start to hunt for glimmers of hope on the internet (which I know I shouldn't - but can't help it) positivity is so scarce.  This sh*tty disease has many forms and many factors that affect each and everyone of us differently, but the one thing we all have in common is we ALL want hope!

If you don't mind me asking😱(I know one should never asks such questions so u don't have to be exact) were you in your 30's, 40's or 50s when you were diagnosed with stage 4.

B

[lollypop84]

Hi blondie! 

first of all 17 years....wow!!! Where are/were your mets? I’m newly diagnosed ( jan this year ) with spine mets in a few places and I’m still struggling with my diagnoses. I’m only 35. Have you done anything to help with your mets? Eg diet or supplements? You’ve given me hope so thank you xx

[blondie]

Hi Beebs - my first treatment after reoccurrence was stronger FEC but the cancer kicked off again about six months later. Taxotere and Herceptin followed towards the end of 2003 and into 2004. It did the job so I suppose I was NED sometime in 2004. My lovely oncologist, to give me hope, told me that he knew of a woman in America who had survived four years - and I’m still here! 

[Beebs]

Hi Blondie

17 years - that's absolutely fantastic😊

If you don't mind me asking how long after treatment for stage 4 were you NED? Asking you beats Dr Google!! 

B 🙂

[blondie]

My annual update but in such strange times! I can report that I am still fine and still NED.

I have taken the, once unthinkable, decision to stop my Ontruzant treatment for a few weeks(?) while I re-assess the risks to me of attending hospital and breaking my shielding status. As I now have a form of leukaemia the risks of the dreaded CV19 are heightened by my weakened immune system.
The lack of evidence of what happens to those ‘long term survivors’ who stop taking Herceptin/Ontruzant really doesn’t help me in my decision making. I know that for some the term ‘cure’ has been bandied about but I have seen no statistics or papers to back this up. I know we have all railed at the tabloids for putting ‘breast cancer’ and ‘cure’ in the same sentence for so many years now, but it is so hard to make an informed choice if the information isn’t there! 
I have no idea how many of us ‘long term survivors’ there are. Are we not statistically significant enough for a study?

Are we not an interesting phenomenon? Is there nothing to be gained by a close look at us to see why we are still here? Do I want to be an, unintended, Covid19 experiment into seeing whether my tumour returns if I stop treatment?

Well ok I’ve got that out of my system so you can see that I am definitely fine for now! 
Wishing you all well, especially those going through treatment, coping with postponed treatment and in lockdown.
My thoughts and virtual hugs to all my Secondary friends - stay well and safe

blondie