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

[Unregistered]

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/newsletter/pdf/nutritionandcancer.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

[Unregistered]

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!

[Unregistered]

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

[Unregistered]

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

[snoopy]

Hi Carol


Have you seen

http://www.breastcancercare.org.uk

or

www.phpbbserver.com/breastcancer (http://www.phpbbserver.com/breastcancer)

A couple of UK sites with discussion forums.

[Sandy H]

Welcome to this site Carol: Sorry you had to join us under these circumstances but it is a good place to be. Many caring and compassionate people that are still here because they became pro active in their treatment. I for one was diagnosed with inflammatory breast cancer, always a stage 111b or IV, in March 2001. Was given a very poor prognoses with NO long term survivial!! Well, here it is 5 years and we treat my disease as a chronic illness with no cure but keeping it stable and protecting my quality of life. You will no doubt hear from others and those that are stage IV and doing well. Ask lots of questions, do research for you advisors, eat well, get plenty of rest. We are here for you. Any questions you have someone on this site will be able to answer them and give you resources to look at. Keep us posted and we will be praying for you. Sending you a special hug and one for each of the little angels. Sandy

[TriciaK]

Dear, dear Carol, My heart goes out to you! I relate to the fear you feel, and yet your strong spirit shines through. The first thing I decided when I was diagnosed with BC 21 years ago was that I would never say "I am dying of cancer" or even "I have cancer." I would only say "I am FIGHTING cancer." And I refused to let anyone use the term "terminal". Life is eventually terminal for all of us who are alive! Just don't let anyone dwell on the thought of "terminal". And the first time I was told I only had so many months to live, I got mad! My feeling was " How dare you say that! I'll show you how wrong you are!" and I did! I have licked it 3 times, the last two times were stage IV, always er and pr positive. The last time in June of 2004 was her2. It was the worst of all, but because of herceptin, it is now a good thing to be her2. Now there are ways to fight that never existed before. I am now NED again (No Evidence of Disease). I agree with Lisa and those on this website who have said to ignore the predictions of those who say how long you have to live. Only God knows that! Your attitude and fighting spirit will have more to do with how long you have than anything the doctors can say. I sense a fighting spirit in your post, and you can make it work for you. I have said it before: "Faith and Fear cannot exist at the same time". Fear will destroy faith if you let it, just as faith can destroy the fear. Fear is actually False Evidence Affecting Reality. And don't let anyone talk about "false hope" or "being in denial". How can Hope ever be "false"? Hope is the opposite of Despair, and they cannot exist at the same time, either. And let's ALL be in denial of those dire predictions! Better to deny them than give them any credence. It's your life and your body and you know better than the doctors do. Keep a picture in your mind at all times of being there when your little ones graduate from school and when they get married. Picture yourself there! Positive mental imaging can work miracles. I am not just making that up: I have a doctorate in psychology and my husband is a licensed psychologist. We have seen first hand over and over the miracles that positive thinking and positive imaging can create. How I wish I could go to Scotland and give you a big hug in person! My maternal ancesters are of the highland McIntosh clan, and I know how strong and stubborn the Scots are. Make it work for you, lassie! Hugs, Tricia

[julierene]

My bone and liver mets completely disappeared IN 3 MONTHS with a weekly infusion of:


Herceptin
Taxol
Carboplatin

I don't know which one made the biggest difference. My hair didn't even fall out! I would find an Onc who will give this wonderful treatment to you. Mayo says that 90%+ are alive in a year with this treatment.

I decided to tell my 5 year old. She cried with me, but I told her I would live as long as possible for her. After she realized it would be a long long time from now, she started to realize that everyone dies. She had some fears at first. It's amazing how much she understands. Sometimes she asks me when will I die, sometimes I try to tell her it will be when she is a very big girl. She likes to try to guess her age, and I keep telling her we don't know. But I promised her I would be sure to tell her when - when the time comes. She is amazing. But she is starting to understand that we need to live every day to the fullest - because we never know when that day will be.

My mother died when I was 16 from breast cancer, she decided not to ever give up - and unfortunately, we never said goodbye because she went into a coma. It has been something that has felt like an open wound ever since.

[Lee]

My hair is totally gone! Anyway, just wanted to tell you that I really enjoyed this post by you because it is so full of optimism & excitement.

This week I am starting my last cycle of Taxol/Carbo/Herceptin and, like you, I'm currently NED. I feel *so* optimistic about my life going forward, and I also have resolved to live my life to the absolute fullest I can from here on out.

My 7 year old has really been worried about me, even though I haven't really been sick, so I'm hoping he can relax a little once my weekly treatments are over and my hair grows back.

I think we have every reason to be optimistic about our LONG futures!!

[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

[Rich]

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

[Carol H]

Dear Tricia, Your words were very inspiring to me - You are a role model to me on how you can fight this disease and not accept that its over - This site has given me so much hope that I can live to the age 40 and hopefully beyond - My daughter was lying in bed with me last night and we were talking about what she would like to do when she grows up and how she would like me to come and live with her in her big house that she dreams of having in her adulthood and for the first time I said yes it would be marvelous instead of trying to avoid talking about things relating to when she is older - I have so much hope now and thank you so much.

[Carol H]

Dear Julierene, thank you for the info on your treatment - I will keep this for future reference if I need to - I thinks its amazing your cancer in both bones and liver dissappeared - I am just on Herceptin, but carbopatin and Txol may help me in the future and will discuss it with my oncologist when the need arises - the bone spread has been there for over 2 years now and is stablised but wish it would disappear like yours - thaks for listening and so nice to at last hear from other younger women with young children just like myself.