secondary cancer - any chance of long term survival?

I suspect that people move away from these sites after a certain amount of time but could anyone add some positive comments/stories here? Bad week, I really need of hear something hopeful, within as JaneRA says, the parameters of reason,

SORRY orginally posted on wrong link - thanks if you have already responded

Hi Patricia,

I’m a long term survivor I hope. I was originally diagnosed in 1990 at the age of 39, had new primary and secondary in 2002 when I was 51, another new primary in 2005 when I was 54 ( last one only a couple of millimetres ) but persuaded the breast surgeon to remove the "bad breast ". Reasonably well since but some side effects due to radiotherapy damage and current medication.

I think it is so difficult to generalise as there are so many different types of breast cancer. I think the fact I was ER++ helped and although I was HER2+++ but didn’t qualify for herceptin due to being out of the 6 month chemo qualifying period when herceptin became available, I have been told that I might be able to have it for a future recurrence.

Take care

Wendy x

I have also survived 6 years since my secondaries diagnosis. However, as I’m running out of treatment options, I wouldn’t expect to last a lot longer. Hormone treatments no longer work and I’m running out of chemotherapy treatments.

However, I still feel I have a good quality of life and intend having some fun during what time I have left (holidays, dinner parties, art galleries, theatre etc).

I had bone mets and lung mets at the time my secondaries were diagnosed. The lung mets disappeared to my surprise after being put on Arimidex (was ER positive). So for a long while, I “just” had liver mets and felt well. Now, I have liver mets as well and expect that will be the cause of my death.

What is your idea of long term survival - are you aiming for a number of years or to be around for an important event in your own oir your fanily’s life?

Holey.

hello all,

I posted about a women I met a while ago in the breast clinic. She was 54 and originally had breast cancer when she was 31, she had twins of only 12 months old at the time, she had a mast and chemo, rads. Five years later at only 36 it had spread to her bones and liver, she is triple neg and has only had chemo, in all that time, 18 years, her mets have been controlled although she has had chemo a couple of times. She was there today as she has had a cough and they feared it had spread to her lungs. But her news was good and her scans were all clear. As she said to me she feared she would never see her babies grow up but now she has 10 grandchildren!

I am glad that there are lots of people on here who can support you and know what you are going through. Like I said the last time I posted this, I hope you ladies dont mind me dropping in as I have no personal experience of secondary breast cancer, however, I think this woman’s story is too positive for me not to tell it to others who are going through a similar experience.

Polly x

I was dx with bc two years ago, ER++ PR+ HER-, then with bone mets 3 weeks later (I am now 58). Currently on hormone therapy (Femara), never had chemo. I have my sights set on the 5-year milestone and it is encouraging to hear stories of those who are doing well after several years.

Hello …

I was dx bc 2002 - (mastectomy, chemo, radio) and dx sternum hot spot May 2008 - Recently I’ve had a couple of conversations with 1) a doctor (unconnected with my treatments) and 2) a retiring breast cancer surgeon who both say that long term chances can be good. The breast surgeon, whose name I’ve forgotten - said that he could do 50% of the cure, the remaining was in the mind, so please you (and me) keep positive and hopeful. Because he is a very experienced professional in the field, I’m inclined to include his comments ‘within the parameters of reason’ . I mentioned that I’d read Jane Plant’s book and was following her suggestions and he said ‘good’.

However, I know only too well that keeping positive is difficult at 3am at night! I have become a bit of a Jekyll and Hyde in being positive during my waking hours (when I know I can be proactive in fighting it) and not so hopeful, kidding myself this is more realistic, at night. I’m trying saying positive thinking things which helped me a huge amount during the first bout of primary.

Thanks for raising this topic Patricia as it’s something that was bothering me a lot back in June but I seem to have got on top of it for now. Probably helped by fact that my second lot of blood tests after 3 months Femara + vegan diet had gone back to normal apart from the general cancer marker which had gone up a point. I was so relieved that a big bone operation has been put off for now.

Carrot

I was originally diagnosed in 1995 with primaries and have lived with secondaries for 4 years this month (the last 2 years being on Xeloda).

I never imagined, when I first found out about my mets, that I would still be here but I am and still enjoying my life even though I can’t do what I used to be able to do mobility wise.

I’m now aiming to see my son graduate from uni next year as I was told that I wouldn’t be alive to see that so I’m determined to show my onc that she was wrong!

Just for the record my comments were about the ‘parameters of the possible’ not the ‘parameters of reason’, and I’d like to write now about those parameters of the possible.

First of all I strongly diasgree with the suggestion you make Carrot that 50% of the cure is in the mind. I also disagree that followign the Jane Plant diet or a vegan diet will make any difference to the outcome of sceondary breast cancer.

At a BCC event last autumn on secondary breast cancer one of the speakers talked about the landscape of secondary breast cancer currently changing very rapidly and I think that is true. New treatments: aromatase inhibitors, herceptin, and new chemotherpay combinations are extending survival times for many people with secondary breast cancer and I too celebarte with the great stories of long term survivors told here. Long may the numbers grow and grow. But for each of those good news stories I could sadly tell of other stories: of the women who have died since my own primary diagnosis 5 years ago; of the women who died within weeks of a secondary diagnosis; of the women who died in under a year from primary diagnosis etc etc. I hold those awful stories in my hands and head at the same time as the good stories and knowing both versions is the only way I get to live with the truth of this disease.

So many factors affect how long someone survives with breast cancer: the type of cancer in terms of pathology er and her2 status etc; the time between primary diagnosis and secondary diagnosis; the response to tretaments; the site/s of the secondarries. Attitude doesn’t come into it, and sometimes logic fails too.

In Susan Love’s Breast Book she says that average survival times after a secondary diagnsosis are between 2 years and three and half years, and from my own anecdotal observations I’d say that as an average that sounds about right…though maybe its imprving a bit…and wonder if anyone has any more recent figures. The average hides those at the good end of the bell curve and those at the bad end.

Just as with primary breast acncer no one can be sure whether cancer will recur, but there are some likelihoods, so with secondary breast cancer there is also uncertainty about survival, but still probabilities for eaxch person as an individual. Doctors rightly don’t like to answer the question: ‘How long have I got?’ because until the very end stages they simply don’t know. I take strength from the good news accounts and feel sad and angry about the bad news. There is still such a long long way to go before cancer is a ‘chronic’ condition let alone a curable one.

Jane

Well said JaneRA, after living with this for two years and three months ( my wife not me ) I am 1000% convinced that diet, attitude, drink, smoking, ( and all the so called health guru´s who just take money for nothing ) nothing but nothing helps fight this cancer other than what the medical profession can provide.

However I have to qualify here, a positive attitude, just as with anything in life, will help us all manage better day to day.

Terry

My wife, 39, was diagnosed with secondarys after birth of our daughter, this is nearly 3 years ago. There have been many problems and treatments along the way but overall Q.L. has been good in between. Serious liver involvement now means that she has been on her first chemo since primary 7 years ago, taxotere for 3 months now and has been responding well.
In hospital at moment due to side effects and possible blood clot but have every confidence that she will pull through again and move on.
Ct scan results tomorrow. She is the most remarkable person I have ever known and her strength and determination radiates out and touches all concerned.
My daughter and I can’t wait to have her back home again where she so desperatly wants to be, I am just not looking forward to explaining a little accident I had,
…I thought all cloths had colour fast dyes these days.
Dave

Jane you say it how it should be said…Its funny how Jane Plant herself had a recurrence of breast cancer even though she followed this terribly restrictive diet, I have known the smoking drinking red meat eaters go on to live many many years and the health fanatics who live off nothing but a miserable dietry intake succumb within months, there is no rhyme or reason and putting pressure on cancer sufferers to feel “upbeat” and “positive” is just adding to the feeling they can control thier eventual outcome. Being positive is great for those around you as it gives them the feeling you are gonna be ok and your dealing with it but your real angry despondancy is buried inside.

As for long term survival, as yet there is no cure for cancer and like Jane rightly says this is no way near a chronic illness, I just lost a dear friend after a few months of a secondary diagnosis, but on the other end of the spectrum I know a lady 5 years down the line, the difference between the two was a combination of many factors ie: her2 status, hormone status, grade etc and more importantly where you have a recurrance and how it responds to the treatments.

My husbands grandmother had a mastectomy in the 1940’s and lived to be 90, she drank like a fish (not recommending this) and had cream and butter with everything, cancer does not care if you live off mung beans for the rest of your (miserable?) life, it is all the luck of the draw.

Hugs to all

Nikki xx

(a realist)

Patricia

Hi to you, my mum was diagnosed with cervical cancer seconderies when she was 30…my brother and i were 11 and 12 and she was a single parent…

She was given 3 months to live had chemo rads hormone therapy the lot, i can remember how thin she got and how she loked it was terrible…

Now my mum is 61 and lives in Spain with my wonderful step-dad and is going strong…

This is most definately a positive story and i hope you have as much luck as her…

Luv Allison xxx

Thank you all, I needed these stories very badly. I hope I’ll be as lucky as some of the women in this forum, but whatever else, the storiesw gave me hope that I will be with my kids for a couple more years.

love Maroke

I live with a lot of hope about the new discoveries they are making in cancer. I think that in many parts of the world that it can be classed as a chronic illness as the treatments and drugs that have been available that have not been on the NHS can make a difference. We all have to live with the hope that the medicines are one step ahead of us needing them. I also believe that a positive mind can help, it may not give you anymore time but it will make you sleep easier and have a better quality of life that if you don’t have one.

Diane

xx

What a fantastic run of contributions.

I have just got home from visiting a healing tree. I think it has done me good, my husband thinks it has because I think it has, and that is what matters.

I had my secondary dx in June, having been first dx in 1999 and secondly in 2003. I cannot believe life can be cut short so quickly and aim to stay ahead of the treatments and still be here in several years time, to say the least.

I am just looking froward to the Chemo being over so I can feel normal again - what ever that is.

I hope people will continue to contribute to this thread.

gill

Maroke

You had me in tears reading that bit about being with your kids a few more years…I think thats what we all think at some point on diagnosis i was told to expect grade 2+ with chemo the lot because of the size of the lump etc My boys were my first thought it broke my heart!!..Someone must have been watching over me it turned out to be grade 1 so no chemo just rads and Tamo…

As Diane said try to stay positive, what an easy thing to ay not so easy to do…

Sending you my very best, wishing you all the luck in the world.

Luv Allison xx

Just wanted to add…my husbands nan survived a secondary cancer diagnosis for 9 years and died of a heart attack not cancer…just asked him so thought I would add that to make this post more positive for you.

I did post on your ‘wrong link’ patricia but its nice to have all these posts together. My story doesn’t make easy reading but it did start 18 years ago with first dx. I went 5 years clear and thought I was free from risk after that!!! But it returned - a new primary in same breast, then 6 months later with a recurrence in the skin of the mastectomy site. That meant a big op to ‘recover’ my chest wall with muscle, skin, fat etc. A VRAM flap - like a TRAM but longways. Then 2 years later a 7cm tumour in the other breast so another mastectomy. Again 2 years later secondaries (2002) with extensive bone mets. I think going thru all the treatments at the time was not easy but looking back the memory fades. So many radios & chemos (5 in all) and now pamidronate and herceptin all is very stable. I know folk say they could never go thru it again - but if there is a chance of more years I would. So many things I hoped to see happen in my life and thought I never would - have come - and gone. Life is good.

Dawn

Thank you to everyone. I just thought that I would share a positive story that my sister took from this weeks Kent Messenger September 5th, 2008. To quote her husband “Maria was diagnosed with cancer for the second time in January 2007. It was in her brain, bone, lung and liver. She was hositalised several times and had to battle hard to stay alive throughout he year. However after being told there was no more that could be done for her and it was just a matter of time, Maria’s scans at the end of 2007 showed a near complete recovery. Maria contines to get stronger and stronger…”

Maria are you out there? I am sure that we would all like to hear more about this!

Pat

I was diagnosed with stage 4, bone mets, from the very beginning…in 2003. I live well and need no pain killers. So far I have had no other organ involvement. I realise this could change at anytime but right now life is good…x