Never hearing the word Cured!!!!

barbe1958

Barb, I have fibromyalgia and I truly wouldn't wish it on my worst enemy! Well, maybe for a day or two...

agada

I know what you mean. My doctor said I am cured BUT there is a 1% to 2% chance of my cancer coming back.  I talked to a pathologist here at work and he said they never believe a patient to be totally cured!  The percent chance of the cancer coming back should tell you something.  This does not mean it will come back, but the doctors err on the side of caution.  There are no guarantees in this disease.  Sucks, no?

KerryMac

When I was first Dx, and doing my crazy-woman-googling, I came across a post by a woman on a different board than BCO. She said, "when I was 24 I was Dx with Stage 3 BC, 6+ nodes, I had a Mx, and was told I had 2 years to live. I am now 44."

Now the tragedy in that would have been if she had stpooed living because she was told she was going to die. Can you imagine - not having a career, not getting married, not having kids, etc, because some Dr had told you you were going to die.

Nobody can predict what will happen to us. All we can do is to live like it isn't coming back.  

Anonymous

Amen to that, Kerry!

Also, I'd like to add... so.. we have an X% of a reoccurence for the rest of our lives?  Is that any worse than the general population's % of getting any other type of cancer in their lifetime? Of dying in an accident in their lifetime? Etc?

Laugh, Love, Live while you are here on this Earth!

mmm5

Hi Ladies

I don't post often on stage 3 but sometimes when I see someone new asking for hope I like to come and tell the story of my StepMom and her Sister. (plus I love this thread great ladies here)

My StepMom is in her 17th year now after surviving stage 3. She had 4 nodes and she had AC, Tamox for 7 years, then Femara for 6. She is doing great. Her Sister is in her 26th year after dx for stage 3 BC, she thought she was going to die had 9 positive nodes and back then there was no Hormonals. She had double MX and 7  months of chemo, she is doing wonderfully. They are both in their 60's and the one thing they have in common is they both really committed to daily exercise and have not given it up. My Stepmom walks at least 3 miles per day.

 I know a lot more long term survivors but wanted to give you the one's that I knew best. It is easy to come here and see a lot of bad news but thats why we are on these boards most of the time is to deal with anxieties that this disease brings, so the news will be of an anxious nature. BUt believe that there is a lot of good news out there too.

Lago- this is what I have learned about Her2 through many studies and from my 2 Onc's one who is nationally renown and has worked with Slamon. He states that with her2 there are cancers being cured due to the molecular nature of Herceptin. (again we are not sure which ones) However if you have a grade 3 highly aggressive Her2 cancer with a high +3 Her2 grade confirmed by FISH and IHC, you can be cured with Herceptin. He went to the BC symposium in Dec where Slamon spoke and on the 10 year data there is still a lower level of recurrence. And they believe if a grade 3 Her2 cancer has not recurred at 10 years it most likely wont, similar to trip neg. HOWEVER there are no guarantees and no way to know if you were "cured". I guess what I am trying to say is you may be able to be cured but you don't know it and beyond that statement there is HOPE on the horizon. 

lago

Thanks mmm 5. Yes I am highly HER, grade 3, high proliferation rate. Nice to know there is a chance but "cured" hmmm I don't know. NED for decades works for me.

hmh23

SherriG;  I agree on the Ativan!  I believe God created extremely bright people who invented drugs like Ativan etc and therefore we are meant to use them as directed.  If it helps you get through a tough time, then use it!!!

Heather

karen1956

I don't leave home without an Ativan and ibuprofen....

Shanagirl....how do you manage a heating pad on  you?  I'm hot enough as it is!!!  Last night I had to open the bedroom window during the night and it was in the 20's out......Ibuprofen never really worked well for my AI joint pain..or for that matter my headaches (so why do I take it)...but I've been try Aleve lately...think its a little better.....

suzanneinphoenix

You are right, faithfulheart....unfortunately.  As I have been reading.....there is NO CURE for BC. I don't know how I am to move on, get over....all of this.  But maybe that is the key, we aren't supposed to forget about it and we do have to stay vigilent.  But I have about 4.5 more years before I hit that 5 year marker anyway!  Maybe day by day is the way to be......

elmcity69

mmm5 - thank you! i've been in a funk all day, but your stories gave me hope.

blessings to you, your stepmom, and her sister -

xo

walker2222

Look forward not back, pray for a cure for those who come after us.  I am not going to worry about my future, just take it one day at a time.  Hope those darn hot flashes, power surges ets do not keep you up at night. 

There are many women like mmm5 step mom and her who are approching their 20 years and beyond.  Be an advocate for annual exams and mamos.

Right now I am just managing to get through my treatments, 2 wks of rad done 4 wks to go, yeah. 

Anonymous

barbe1958  ~  Is there a specific test that is done to determine fibromyalgia?

karen1956  ~  I do get horrible hot flashes  a few times a day but not as bad as the frequent ones I used to get.  I think it's the 75 mg of Effexor that keeps them away.  I have noticed that since being on the Tomoxifen, when I do get cold in between feeling hot.  It must be that having no estrogen, messes with your ability to regulate your temperature .  I'm constantly putting my sweater or hoodie on and off thruout the day.  And yes I don't go anywhere either without an Ativan in my pocket.

Barb

barbe1958

Barb, (as I sit here with a hoodie draped over my shoulder! ehehehehehhhe), there is no definitive test for fibro, but a rheumi can diagnose based on symptoms and the lack of anything else. There are some blood tests that can infer it, but not confirm it. Get thee to a rheumatologist! Effexor is one drug that is supposed to help. I am on Cymbalta and Oxycontin...sigh. I've been dianosed for about 11 years but it took about that long to get the dianosis! Doctors are much more savvy these days, but it is not an umbrella that covers everything, you can have multiple things going on. I'm sure you've Googled it; the info on the internet just blows my mind. The world wide-web wasn't even out there when I was trying to find out if I was a hypochondriac or truly sick!

faithfulheart

elmcity69,

you will see your guy graduate!!! Your nodes did there job! and they went  in and took the cancer out. Your cured!!!  I said it!  the dr.'s may not say it but we can!!

So lets all shout out today, We are cured!!!!!!!

Shout it some where public, I dare you!

Your increadible,  God bless us all!!

Faithful

p.s elmcity69, my husband says the same exact thing.There sould be a husband support thread.

walker2222

Faithful - your right we need to shout it out.  CURED.

barbe1958

I'm dancing with NED!~!

allalone

All of you who have upbeat treating teams who tell you you're cured, or are well on the way to being cured - and give you hugs - are so lucky!!!! All I get is doom and gloom from my team and while I respect that they're dealing with death every day, and don't take cancer lightly, I always dread my appts and come home feeling like I should arrange my funeral asap.

It takes a while for me to bounce back to being my usual happy, optimistic self - but coming to a site like BCO for information, arranged as it is from DX to Hospice - with some incredibly sad active topics - I can't get my head around how people can switch off the bad stuff and remain upbeat here for too long - but as Pupster advised me, take a BCO break when it all gets too much.

Sorry to sound despondant. I'm ploughing thru the Femara thread right now - 57 pages, aarghh - and while it looks like the anti-hormonals come as close to a "cure" as ER+ gals are likely to get, I don't like reading that they only increase survival by 8%. Anyone know if that is correct? I see so many of you doing great after years on anti-hormonals - and desperately want to join you - but in view of the "variables" Sheri mentioned I wonder if there's something else you've got going in your favor that I don't have ......such as a DH?

walker2222

allalone - even if I did not have my DH I would still try to keep a positive perspective on my daily walk with BC.  I find peace in talking with my fellow BC sisters.  I have great support group at church who pray for me daily and tell me how I have inspired them on how I am dealing with BC.  I do have my down times, like crying in the show and let it wash away, having a meltdown because my recon has not gone as exptected. 

I want you to know that YOU are not alone we are here with you.  I cannot deal with % anymore, as my RO told me I had 55% chance of BC coming back.  I am surviving one day at a time.

Hugs to you and hope you have a great weekend

faithfulheart

allalone,

 I am so sorry your team is not more incouraging. I thank God for my team of dr's, they understand , and we your sisters truley Know what you feel. Yes it's wonderful to have a husband who is there for me, and my children that force me out of bed each morning. moms, sisters and friends. There all great, but they do not have a clue what it is truley like to be dx with bc!

We your sisters do, we are here for you, people will fail you, esp. dr's some times,  but I beleive we are all children of God and He loves you and is with you!! Your not alone.

Lots of prayers for you tonight!!!

Faithfulheart

KerryMac

Allalone - I was told that all my treatment would increase my survival by 50%. I don't know from what to what, but all I focus on is I am doing everything I can to prevent a reoccurance.

I am sorry you don't have a more supportive team. I have never been told I am "cured", but my Onc is treating me with "curative intent". She always says "I am glad you are well", and that for me is enough.

No-one can predict what will happen with our lives, anything can happen to anyone at any time, BC or not. A friend of mine had a friend literally drop dead over the Xmas period - she was 36 with a 2 year old, and no health concerns at all. You just never know. All I can say for sure, is that today, I am well! And I'm not going to waste it.

lago

Allalone I was told all my treatment would increase my survival by 44% (on top of the 40% that don't need any treatment at all) totalling an 84% chance of being alive and NED in 10 years. That doesn't mean that the cancer will not return. It might return 20 years from now… or I get hit by a stray bullet riding through a bad hood in Chicago. Our mortality has always been a crap shoot statistic. I'm trying not to focus on the time I don't have left but the time I do.

Sandeeonherown

I am only 6 months into this journey but my radiologist said "You will be doing monthly breast exams for the rest of your life and will need to continue with mammograms anually"...no one is saying thwe word cured and I am not asking. I was under 1cm and had surgery, radiation and now Tamoxifen....I simply want to hit the 6 month mark, be told that I do not have breast cancer in the right breast (I had lobular 'features' in the cancer in my left breast so there is a 50% chance it will turnup in the other breast in the nex 14 months...statistically speaking....but with surg. rad and tam...I have a 925 chance of not seeing this recur. I like those odds....I spent my life making sure my salt intake was non existent and being heart healthy because that is how my parents went....but breast cancer? Not a sign of it anywhere in my near or distant family members...so it only tells me that life is random....cell phone tower near my home for 7 years? checmicals over my years of travel? Random magic? Don't know and don't care....As far as I am concerned, the cancer was removed in August....I will worry about it recurring when or if it recurs. In the meantime, i am exercizing, eating well, rarely drinking, doing my best to laugh a lot and trying to love my life...oh yeah....and I start meditation this Wednesay! I agree with you lago...focus on what is in front of  and they days we have. ....once I know in June if I am cancer free for now, I will be making a big move....preparing myself for whatever happens in 6 months time....so I guess really...I am taking my life 6months at a time...

As my trainer says, "Anyone can do 4 more"....I am going to aim for " Anyone can do 6 more" !!

barbe1958

Iago, if your odds were originally 40%, then 44% of that is 17.6. So you have a 57.6% of not recurring. Isn't that how it goes?

walker2222

Our lives are filled with uncertainties, I also had good friend pass away right before Christmas.  He thought it was just a cold, he passed away in his sleep two days later.

My sister gave me a healing Angel and here is her prayer as I am praying for all my BC sisters:

Let the Lord stand near you as you call upon Him, and may He deliver you from sickness and restore your health. amen

Sandee - I like what you say about 6 more.  That is what it takes.

barbe1958

Amen!

lago

Barb, No it is an additional 44%. She put in terms of 44 more women out of 100 are cancer free and alive at 10 years. There is a bar graph that shows the increase.

So I have a 12% (2% die of other causes) of relapse in 10 years with the addition of chemo and hormone surpression therapy. Remember this is for my age, health and diagnosis. Not every stage IIB will be the same. I also don't know if Herceptin and HER2+ status was figured into the equation. I doubt it because there isn't as much research done on Herceptin and "early stage" breast cancer. Herceptin for early stage hasn't been standard care for 10 years yet.

barbe1958

Well that's better!!

lago

Yes it's better but I'll be 59 in ten years. I want more than that! 

allalone

Thank you all for your kinds words of support. I am so very grateful that I can express my fears here to women who get it - I just don't talk about C in real life, and when I'm forced to (with docs) they have no idea what it feels like to be at the receiving end of their doom and gloom.

As I wrote elsewhere, I think age, overall health and family status play a huge part in governing our decisions. If I were younger, had no other health risks and had a husband (to help me) and small children (who depend upon me) I would go for the big guns. Because I'm not in that situation I tend to be very cautious about jeopardizing my current reasonably good health with treatments that may or may not extend my life, and may or may not have serious SEs.

As everyone has already pointed out, life itself is a lottery and of all the other incurable cancers out there bc is really not up there as the most horrible ... but of course it IS for us.

Welcome Sandeeonherown, I hope you find meditation as helpful as it has been for me. If I can attribute bc to anything, it would be STRESS. Like you, heart disease was my No. 1 risk, and it still is - which is why I am so scared of bc treatments.

rayofsun

fath, I had extreme leg pain in november, at first thought it was a clot, from tamoxifen and had a doppler which showed it was not. It did not get better and would hurt at night and was extremely painful. needless to say I was scared.I saw an ortho who did an xray which showed nothing and then I saw my onc who ordered a pet scan, they wanted an mri too but I could not because I had expanders then. The scans came back good and eventually it was decided I had a bakers cyst and some arthritis.

 I go thru periods of thinking my cancer will return but these are usually short lived. It does not matter how much support you have, I believe cancer is very personailized and no 2 people share the same journey and it can be lonely. When I get to those lonely times I also try to make them short lived.

Ray