Wishing to live to age 40

[Carol H]

I am from Scotland, and 37 yrs old, Married with a Daughter aged 9 and a Son aged 7. I was diagnosed with Stage III Breast Cancer in June 2000 and had a radical Mastectomy the very next day(no reconstruction) then 6 months of chemo followed, very bald and very sick then 20 doses of Radiotherapy and was taking Tamoxifen for a year then found lump on my nekc, had a biopsy and informed the cancer had returned. Had various scans which revealed the cancer had returned in my bones(spine and rib cage) and a massive tumour on my right and only remaining breast. I was told I had at least 10 months or so to live - I was beyond devastation - I had two young children and decided not to say anything to them other than the cancer was back but the doctors will try and fix it - there was no way I was going to give in yet -I was also informed I had type HER2positive Breast Cancer (In the UK we are a bit behind the times with regards to science as the USA is way more advanced than us and we always tend to get a new drug a few years after its been used in the USA) I started 6 months of Docetaxol Chemo and Herceptin intravenously then the tumour in the breast had reduced but the bone cancer has remained the same - To date I still go every week for my weekly Herceptin treatment and every 4 weeks received by drip a Biophosphate Drip for the bone Mets - I do not suffer any side affects with the Herceptin, after from tiredness and I take daily meds or oral low dose morphine tablets for the bone pain and lead a normal life as a wife and mum to two young children who need me to be a normal mum to them - I love normality and don't wallow in self pity and try very hard not think too much in advance about the cancer and when all the treatment with stop working. Life is wonderful.

I have decided not to tell my children I am terminally ill only that the cancer is back and cannot be cured but the doctors say Mummy is doing so well and still go to hospital every week for the medicine to keep me well -We decided that to tell the children I was dying and was not even sure how I would react to the Herceptin was too cruel a burden to place on young children as every day they would wake up wondering would this be the day they would lose their mummy - I do not lie to them is they ask me questions - When the time comes that the treatment is no longer working then thats when we will tell them the whole picture but until then why burden them - let them have a happy carefree childhood whilst they can enjoy it. My young son does sometimes have the rare and odd moment of weakness and will bo a bit quiet and have a private cry then open up in his own time and recently he did ask me would I be alive when he turns 8 yrd old this October - I replied by saying I would not lie to him and say I would but would hope and pray I will be around a fighting fit and am sure I will be which he accepted and was fine after that.

Me or any of my family have not had any counselling as we do not need it as I am a very positive person who just gets on with things not matter how hard they are - I am no saint but just think why spend precious moments of your life worrying all the time - just get up and get on with it thats what I think - but sometimes in bed at night(not very often) I think about how I am not afraid of dying but terrified beyond belief of leaving my beautiful young children behind without their mummy to give them their bedtime stories and hugs and cuddles when they need them and silly things like making sure all their home comforts are around them and the thought of them lying in bed at night weeping uncontrollably because I am gone is just too much and worrying about how my husband will cope going through the rest of his life without me and coping without me as I do all the housework, organising kids school and club activities etc - and worry everything and all their routines will fall apart - but know he will be a wonderful and caring father to my children am in some ways jealous that he will see my children grow in adults, get married, see my daughter in her wedding dress, see our grandchildren etc but cannot spend time resenting this and concentrate on the present and now.

Are there any other woman in the UK in my position or similar with young children as there doesn't seem to be amy UK websites or even any tips or advice from US women would be helpful

Carol

Such difficult decisions.

There is always hope. Cancer is a very individual disease.

I am sure you will get lots of support from the wonderful women who post to this board. There are many survivors.

My interest is diet and particularly fat intake balancing the omega threes and sixes as an adjunct to whatever other therapy is chosen. I have read extensively and am convinced diet and particularly the type of fat intake is a big factor in helping to reduce risk. There are lots of posts on this board. If nothing else it will help build general health.

It may be you eat "well" already but many like me until recently were not aware of the potential of the type of fats to significantly effect health factors. If you have already covere this aspect please excuse this post.

This is an article I came across recently. It is only one report, and must be taken in context, and could always be the result of somthing else, but the doctors obviously thought enough of it to report it. Obviously magor changes should be discussed with your advisors.

http://www.cabnr.unr.edu/cabnr/newsl...nandcancer.pdf

Again I am sure you will find lots of support and hope on this site. There is always hope. This is an individual disease, the rules and outcomes are not written. Much is not understood. There are plenty of women on this site who seem to be defying the statisitics.

RB

This is a good link, and the sort of thing you could print out and take along with you to give to your advisors, in terms of looking at diet as an adjunct to treatment.

http://www.ajcn.org/cgi/content/full/70/3/560S

RB

[Lisa]

Fear will get you before the cancer, I believe.


First of all, forget the "10 month" prediction. All that will happen in 10 months in a new year will start! Doctors cannot make such predictions, so don't buy into it. I'm glad you're on Herceptin now. Combined with a chemo, it should make a difference.

2 1/2 years ago, after 3 1/2 years "cancer-free", I was dx with metastasis of the liver, the bones, the brain and then the lymph nodes. The doc even had tears in his eyes when he told me. I never thought I'd see Christmas, yet another year. Well, I turned 48 yesterday and loved every minute!
I've been through Navelbine, Taxol, Gemzar and Xeloda with Herceptin and Zometa (for the bones) plus brain radiation to fight this very aggressive cancer that seems to really like my body. So there's lots of fights still left for you.

Enjoy your beautiful children and keep on fighting!

Love and light,

Lisa

P.S. I've wanted to visit Scotland all my life. Very drawn there, so it must be a "past-life" thing!

Another thought.

Tamoxifen has been suggested in trials to be a percusor (increase rather than decrease risk) in women that express high levels of cyclin D1 (from memory), and for another group of which I do not recall the details.

Details of both can be found on this site using the search facility above. These are clearly complex issues and the best strategy might be to find them print them out and discuss with you advisors in case they have any relevance.


RB

Dear,

This is such an insidious disease and yes, many of us feel like the deer caught in the headlights at times. Many times I have railed against God , the Devil. I have 7 kids and a grandchild coming. i am 52. I have had a lifetime of teaching not to blame God, and i read Job recently where God walked to and fro and said to the devil, 'would you consider Job?' That was confusing. yes, God restored to Job, but not before he suffered horribly. I pray and hope that there is a cure on the horizon that you can benefit from, and live out your FULL life. Don't use Tamoxifin if you are her2---do some research. I have been reading that the UK and Scotland are behind the times, partly because of socialized medicine(many people think the European model is so great, but my friends in Germany and the UK say you cannot insist on any tests, there's a waiting list for elective surguries (what if you are er+ and want to have your ovaries out? I waited a week). It's a mess. You think the 'government' can do a stellar job? Swedish people pay huge taxes, and medical care is not free. once, again, conventional wisdom, mass hysteria or no proof, many are on the socializerd medicine bandwagon with all the government finesse of the department of motor vehicles. they forget that we have the best healthcare in the world and people from europe with money come here for it.

[Lolly]

Dear Carol,
Your post is very heartwarming, I'm glad you are fighting and winning. You have all the "right stuff" to keep on for a long time, so as Lisa says the best thing to do right now is throw any and all predictions out the window! Your attitude will carry you far, and the Herceptin will help OF COURSE. When and if the cancer progresses again, you have many options in the way of chemos as Herceptin is very synergistic with some. Stay informed through this site, there's a wealth of info here, so take the time to check out all the links.
Is it springtime in Scotland right now?

<3 Lolly

[Lee]

I don't have any real words of wisdom for you, other than just keep fighting! My children are also young and they are what keep me going, and thinking positive. I refuse to succomb to negative thoughts or feelings, and as I told my oldest (age 7), I have no intention of going anywhere or leaving him any time soon.

I hope the meds you are on show improvement soon, and that you will be here with us long past your 40th birthday. Keep the faith!

[Christine MH-UK]

There is a secondaries forum, too. I don't go in there much, having had just primary cancer (touch wood), but they seem like a nice bunch. The forum organisers can be a bit patronising (such as not allowing us to e-mail each other privately), but the other women are generally helpful.

All the best,

Christine

You ladies are so strong. I want to hug you all.