Secondary Breast Cancer - who would have thought

My name is Sharon and back in 2004 At age 38 I was diagnosed with Early BC. Grade 3, no nodes, 5%E, 95%P, removal, chemo, radio, tamoxifen. I wandered thru this time with force and only positive outlooks.. There was no room for failure. As time went on, I found my new found peace and harmony was slowly eroded by the rat race. I was well so why not put in the past my BC. Everyone kept telling me see you in 12 months. I even gave my wig away as a five year present to myself. Lol. Yep.. I think that was the mistake... Well on my eighth anniversary, Nov 2012 I went to my Breast specialist and had a crazy cough, had been crook for weeks and had cracked a rib. As a precaution off for tests I went.. It took 2 weeks of running all over and tests of all kinds but it was confirmed as secondary BC in my bones and my lung. But funny, the cracked rib is not involved.. But I am glad I had it.. I would have been given a see you in twelve months without it.. The cough is more to do with a chest infection I had been fighting. What is left now is quite insignificant. So where does that sit me.. I still don't really know. I have already started chemo. I have no intention of going anywhere anytime soon but unlike last time I know it is not like I can just get it cut out.. It will be with me for the rest of my life. The one thing that gets me is the uncertainty. Every single person is different and I used to love statistics, it gave me comfort. But now, I really do not want to know as the numbers do not show anything that I can work with. I know that it probably never really went away and that I am one in about four to have it return. Why, well who knows, I suppose the answer is why not. Even if I had of known this earlier I am sure I would have put myself in the 75% bracket anyway. So what has changed.. First time around I could not get past it quickly enough. I made as many aware as I could (and still do about early detection). I have 2 friends who got theirs super early because of me pestering them. But I got lost somewhere and forgot how to live..and began to exist again. The change is in between treatment now and every single minute I can will be spent living and not waiting. I found the first time around that many were initially worried but it was early so they did not worry too much after treatment. This time I feel a difference. Some are writing me off already. Well they don't know me as well as they thought. I hope my chemo hits the spot, but if not I will just keep working on it. My bones do not hurt at all yet and I am thankful but my lung scares me Just a bit (but you did not hear that from me). I have decided I would like to become a statistic of someone who is here for 20 years. So we shall see :)

11 Replies

Anonymous
Not applicable
13 years ago
Hi Sharon,

I just wanted to jump in and say Hi. I am so glad that you found the online network and it seems you are already connecting and receiving some helpful support. You might like to consider joining the online group for those living with a secondary bc diagnosis - You can find the group here: http://www.bcna.org.au/group/4218

If you have any questions or need a hand finding your way around just shout.

Cheers, Daina
Amy
Member
13 years ago
Hi Sharon

I am another ABC'er making the most of every day that I am here. Your attitude is fantastic. None of us know how long we have. My oncologist has never given me a 'timeframe' either. She just says everyone is different and that we still have many more options to try if my current treatment doesn't work out.

Know that you are not alone.

Amy x

PS I'm aiming for at least 20 years too!
MandaMoo
Member
13 years ago
You are Ina really good place - so quickly too. I think for me the shock of the disease spreading during my chemo for EBC was difficult to deal with - particularly as my Drs seemed so shocked too. I have only asked for a prognosis once after a friend died very suddenly from her ABC and my onc refused to give me one. We still talk like I have a future and I live very well and I do everything I can to help myself along in this "journey" (lifestyle - diet, exercise, spiritual and mental well being) Your words resonate with me - I feel a synergy with them. I wish you well. A xx
catcrazy
Member
13 years ago
Wow, this is everything I fear. I am 38 have just hd 6cm grade 3 taken from my left breast. I have opted not to have chemo or radiation and really want to put this brief chapter ( 6 weeks from finding lump to getting removed and now ) behind me. I am choosing to cross that bridge should it come up again. I'll be honest I was not happy with the statistics of not having chemo and going through the drama of chemo and have it only lower my risk by such a small amount ( doc tells me becaiuse of my age and the grade ). My chemo was supposed to start tomorrow and I was given till Monday morning to make my final decision which I have done. I know plenty of you wont agree with me and I don't blame you in a way.

Good luck to you Sharon, my thoughts and prayers are with you. You are so strong I know you will get through this. xxx natalie
Pink66
Member
13 years ago
Being able to share with others that understand gives me strength as when i was only EBC I just worked on getting thru is and leaving it behind.. I am sure that is how the system is structured.. But now with ABC it is different..

I am sure that I am already OK with the diagnosis, I have asked may questions and found exactly where it is - not just a vague description of it.. I have actively sought out things that will assist me to be stronger and healthier and assist my body to fight to it's best ability - and all this even though it is only 4 weeks today snce I found out, and I have already done 2 bouts of Chemo. I am still very optimistic about my outlook and will work on taking each and everyday in my stride where before I really did just take it for granted.. Every second is important, no matter what I am doing (or not doing as the case may be just after chemo LOL) But time with family and friends and being kind to yourself is the key.. It will give me more time than just working to a number. Because I may have a serious illness but there is still not a defined date and really, I dont want to know even if it could be worked out..

I am learning that a number that defines time is not the reality, it is what you do with it while you get there.. Sure, I want to be here til I am 80 but that is a long long way away being only 46 and many other things could happen before then - (perhaps the world famous "bus" - who are we to know our plan).

I love my husband and son with all my heart and it is them that will keep me gong and inspired to achieve so many things. My hope is for treatment to be kind and helpful and give me times where this is not so much of an issue.. Which will allow me to cope with the times when it will be. I am a realist, but an extremely optimistic one.

I was a super control freak (in my past life) and I do like to have control but it is more about ownership now. The more comfortable I become with this shift the better and more relaxed this will all be.

I will strive to take each test, scan or whatever comes in my stride and accept it for what it presents and then alter my forward plan to compliment it..

Do I wish that I was not here.. Yes, of course, but I cannot change this and wishing that I could is terribly counter productive. I am sure that there is a reason for everything that happens to you in life.. But sometimes we cannot work out what it is.. (LOL I am still trying to discover why I got it in the first place LOL - totally no "yes" answers to all the questions - but I have never once asked "why me?" that would achieve nothing - looking at all the people effected by this disease it is almost a "why not scenario")

Well, I think that may be enough of the D&M for now. But I truly do feel that as I leave my past "ratrace" life behind, I am finding a new and wonderful inner peace and calmness that I hope will sustain me during the down times.

thank you again for taking the time to pop in and show me support xxx
MandaMoo
Member
13 years ago
I too am sorry you had to join the ABC club but you have a wonderful atttitude. My secondary diagnosis threw me for a complete 6 and still does frequently 18 months down the track. I wish you well with your treatment too.

A xx
Mich_x
Member
13 years ago
Hey Pink

Good on you for having such a fighting attitude and glad to hear you have to much to do and you are not going to let this mongrel beat you.

I can't even begin to imagin what you must be going through but my heart goes out to you and your loved ones and I know you will keep that strong fighter in you doing it's job every day while you travel the BC roller coaster.

The what if's, the maybe's, the could be's but we don't really know and there is no way of confirming it is all gone. Is what I find the hardest. It is great that we are all so educated now to catch this bloody shitty disease early but why can't they find a way to tell us it is gone or not gone so we don't have to live in that horrible land of wondering day in and day out.

I am only 1 year post diagnosis but the worry is always there in the back of your mind.

Keep it up girlfriend, like you say there is way toooooo much to do!!!!

LOL, Mich xoxo
Pink66
Member
13 years ago
I think that is the bit i am finding the most difficult bit. The "what if" syndrome. You can keep it at bay but it shows up when you least expect it. But i will get there.. i have too much to do :)
Pink66
Member
13 years ago
:)
louiseg
Member
13 years ago
That's what they told me too. You would think there would be some sort of test that they could do to put our minds at ease. Wouldn't it be great if it was just a blood test?