They tell me I'm "cured" but I've just begun.

The word "cured" is controversial, since none of us will ever know we are cured.

I am finishing my third year of hormonal treatment and recently told my oncologist that my anxiety level is up about mets as time goes on. She said some react that way, feeling there is a grace period of 2-3 years, and some are super anxious at the start and then relax a bit. Maybe you are in the latter group.

Questions: do you know why you are having radiation if you had a mastectomy? Did you have positive nodes?

Did you have an Oncotype Dx test to see if chemo is needed (or effective) for you? It is geared to those whose cancer is hormone-responsive. Sometimes the anti-hormone treatment is the best treatment, sometimes chemo is needed as well, depending on the score.

Mammaprint is another test, a little different, but also useful.

Being stuck in a cold house does not sound good for your situation. Are you alone? I had a winter like that last year, though it was after treatment, not before. If you can possibly get out, it really helps, or even having people visit. I took up art for the first time in my life.

I found forums and google overwhelming and got myself the Mayo Clinic book on breast cancer, which is well-organized and basic. Susan Love's book was too much for me at the time. I felt that a book could give me an overview and then I researched particulars as needed, online. This forum is great but there are times when even this forum is overwhelming.

I can address some of your points and I can relate to the overwhelming feeling and paralysis that follows a dx.

Normally PET scans aren't done as part of follow up treatment. Blood work is done to look for any markers of activity instead.

Maybe it's a cultural thing in Italian medicine that they actually tell patients they are cured after all treatment is done. I don't know of a doctor here who would claim that; American docs are more the "you've got a good chance for full recovery", or something similar, kind. If we were cured, would we have to continue to go to follow up visits, etc.? Anyway, I think it's just cultural.

You're right, we can't consider ourselves cured, as though some growth was removed from our skin and we're done. I call it the "new normal". We can't take much for granted anymore with our health. Making some lifestyle changes and taking particular supplements helps me believe that I have taken back some of my power and am able to better protect myself from any recurrence. Taking an AI also helps me believe this. I get regular 6 month check ups from my MO, too.

Yes, this forum can be overwhelming. I found that simply posting my worries helped me move from paralyzing fear to a place where I could begin to logically function again and take care of myself and find information I needed to make decisions. I think the previous post suggestion to buy a reference book is a good one.

I have some PTSD because of my dx and treatment. I was my late husband's caregiver when I was pretty young, when he was dx with cancer. He died, and nearly 20 years later I was dx, so my PTSD makes sense. I take low-dose Xanax when I have to see my MO for regular check ups.

Can you find ways to move (exercise) inside? Perhaps flow yoga classes or other kinds of indoor exercise classes? I find that exhausting my body regularly relieves the mind tension and anxiety that I still suffer from.

Sorry you had to join us, but we are an understanding bunch, and you can drop in here just as a place to share fears, too.

Hugs,

Claire in AZ

You are not condemned. I know this is tough, but you ain't dead yet, and there is a really good chance the bugger will be scared enough by your follow-up treatment to stay away.

That said, I get furious when doctors use the word "cured." For one thing, I find it disrespectful to our stage 4 sisters, but it is also just incorrect. There is no bloody cure. There are really good and effective treatments that can sometimes work so well that it is almost like a cure, but it is still not an actual cure.

I was treated in Greece, and Greek docs tend to flap their lips the same way the Italians do, and yes, it is cultural. Thankfully my onc is Greek-American, so I can give him a colorful piece of my mind when necessary.

Like you, I had a pretty shitty path report, but I am still here 6+ years later. Take my pills like a good girl and lead a surprisingly normal life.

My doc did a full blood panel, including tumor markers every 3 months the first 2-3 years, plus CT and bone scans once a year. Then we moved to blood work every 6 months and a chest X-ray and liver U/S instead of the scans. Now we are down to once a year.

Try to do one thing each day that gives you some pleasure. You WILL get through this.

there is no such thing as a cure. Many of us will live long enough without recurrence to die of some thing else. Doesn't mean we are cured.

I however choose not to live my life in anxiety and fear. I could get hit by a bus tomorrow. My main concern is quality of life not length.

That was a great post, Denise-G. If we need to hear "cure" to move through this nightmare, then so be it. I found every single good stat about my dx that I could, and listed them so I could read them when I was feeling shaky. I emailed them to my husband so he could, too.

Momine--I appreciate, as always, your posts, too. They are always clear-headed and to the point--"flap lip" part made me laugh. Thanks!

To Amelia01: Take courage from all the ladies on this website. When I found out there were well over 100,000 members, I felt less like I had been singled out for no reason. I've witnessed the stigma of a cancer dx before--with my late husband--and I felt so alone after my dx. Here is where I find my information, my community, my sense of "I'm okay". It's why I continue to be active on these boards, even though I'm not in active tx any longer.

Amelia01 are you certain you need radiation and chemo?

Just want to say again that the Oncotype Dx test can clarify the question of chemo or no chemo for hormone positive cancers. I had a high grade, high ki67%, lymphovascular invasion but my Oncotype was low so I avoided chemo. A low Oncotype shows risk of recurrence but also whether or not chemo would even be effective for the particular tumor.

Before genomic testing like this, many were overtreated and exposed to the risks of chemo without the benefits.

Oncotype is put out by Genomic Health, which you can google, and this site also has info on it.

Chemo is doable (not always pleasant but much easier than I expected) as is rads, surgery, anything you choose. I embraced all of it, knowing I was in excellent health otherwise, and for, believe it or not, peace of mind. I wanted to be able to look back, if I did recur, and have no regrets that I used everything I was offered, even if it supposedly barely helped my prognosis.

ILC has a higher tendency to be multi-focal, meaning more likely to be found in both breasts. I am glad I had a BMX because the post-surgery path. showed hyperplasia (no actual palpable tumor yet) in the "good" breast.

My MO also said that doing an Oncotype test (I asked for it later) wouldn't have changed her tx plan because of the + nodes I had.

It's somewhat of a crap shoot, but peace of mind made a big difference for me.

As for thinking positive, it can help, but I rather dislike the "unsaid" about that advice: realistically we can't always think positive with a dx such as we've all had. So when we don't, what happens? Do we feel guilty because now we believe we are putting ourselves more at risk with our negative thoughts? There will be negative thoughts from time to time, for sure. Trying to think positive oftentimes is a lot of pressure on us when we are already trying to navigate treatment, important decisions, appts, etc. Thinking realistically is probably just as good; thinking positively to "cure cancer" isn't supported by a lot of hard science, but can help (when you can do it) to release endorphins, those feel-good hormones, and probably help you get through the hard parts.

claire in AZ