need to hear from stage one grade one survivors

You are in such a "normal" space right now. First year anniversaries are scary as hell. It's so stressful. I was diagnosed at 44 with Stage 1, Grade 1. Couldn't tolerate Tamoxifen, so out came the ovaries and on came menopause and AIs. Stopped them at the beginning of year 5. I was moving on nicely, but got a new primary in the other breast. The good news? Stage 1 again. Breasts are now gone, reconstructed twice, and NOW I feel like cancer is gone for me. I never quite felt that way during those first five years, even though I was living a full and happy life. It was my own dirty little secret.

You may never have to face the beast again. If you do, my bet would be on a new primary rather than mets. But, who's really got that crystal ball?

Believe me, it WILL get better for you. Each minute, hour, day, month, year that goes by simply does that. They go by. What you choose to do during this time is up to you. This anxiety is normal. Antidepressants helped me get past the anxiety more than I ever realized. I'm not saying they are right for you, I'm just sayin'.

You're going to hear stories of women who have survived Stage 1 and beyond for many, many years. But not one of us is walking in your shoes, living your life, fearing your fears. We may understand, but your experience is unique.

In all this rambling, what I really want to say is that you are not alone. Waiting for the next shoe to drop is normal. And one day, one day, you'll realize you haven't thought about your cancer for a couple hours! ANd you'll be here giving the same advice to others.

Control what you can, and let go of what you can't. Easier said than done, I know. But start there.

Big hugs, and best of luck,

Anne

DEBBIE -

I was just a few years older than you when diagnosed about a week after my 49th B-day. I'm sure I probably would have been diagnosed years earlier had it not been for the fact that I skipped my yearly mammograms for 7 or so years prior to the one that got me diagnosed. Had a small, stage 1, grade 1, tumor but mine was 60% IDC and the other 40% DCIS. I had a somewhat early menopause - last period was about 8 months before diagnosis at age 48 and 4 months, so although I was already in menopause when diagnosed, I was surely pre-menopausal when that tumor first began to grow.  I refused all treatment offered except the lumpectomy and SNB (just one node removed) and it's now well over 5 years since that surgery and I'm doing just fine to this point. I've done literally nothing at all in the way of lifestyle changes, so I definately live and carry on with my life exactly as I did before the diagnosis. 

I know it's usually easier said than done, but if you had a lumpectomy with clear margins and especially if you've had radiation and are taking hormonal therapy, you've really got nothing to worry about just one year out from diagnosis and surgery.  If by some slim chance there was any residual tumor left in the breast, a grade 1, slow growing tumor is going to take years for it to get big enough to make it's presence known.  In all probability, you've already done far more than actually necessary for a small, low grade tumor if you've had any treatment beyond a wide margin resection, so try not to drive yourself crazy worrying about.  And as you can see from reading what Anne posted above, if you do get another breast cancer someday, it'll probably be just another small, grade 1 again. A grade 1 recurrence isn't usually a disaster - just another bump in the road.

Ok, so I was 59, 1.9 cm. tumor.  I chose mast, recon and tamoxifen.  declined chemo, had neg SNB.  You are exactly where I was at a year with the worry and feeling Everything was mets.

However, I didn't change my lifestyle.  I am not a heavy drinker, but enjoy a glass of wine or a coctail occasionally.  I did not change my diet, but did increase my activity, but because of a need to strengthen my legs prior to a knee replacement (have held that off for almost 3 years.)

I went by the old saw: if the symptoms last more than 2 weeks, call my onc and discuss it, or get a test to rule out whatever and see what was actually causing it.

I gave up tamox. after 2 1/2 years due to quality of life issues---and haven't looked back.

As Anne says, you will ---YOU WILL---find a day when you just live your life and gasp, saying, "but I had cancer, how can I feel good or laugh????"  But you will.  Honest.

Had my first tumor in 1991;  stage 1 grade 1.  1.1 cm 0/11 nodes.  Had lumpx and rads.

Recurrance in same breast in 2007.  Mx plus recon.

Life does go on and quite joyfully. 

Hi Debbie,

I was dx at 42. Stage1 Grade1. I had radiation therapy then did a year of tamoxifen. Had terrible bone pain with it but stuck it out for a year before I said no more. Just a couple of weeks after my 1st cancerversary I had my ovaries out and started on arimidex. A few weeks after that I had a baseline bone density test and was diagnosed with advanced osteoporosis. Turns out I was one of the 1% of premenopausal women who had major bone loss while taking tamoxifen. As slowly as the medical machine moves at times it was another 9 months before my onc decided I probably shouldn't be taking arimidex with my crumbling bones. The thought process was I was now post menopausal so tamox should be good for my poor bones. Guess "they" were right cause my bone density #'s have slowly climbed. Plus no noticable side effects other than hot flashes, which I could probably atribute to losing my ovaries. Just celebrated my 5th cancerversary on tuesday. It went by quietly, with none of my family even blinking an eye. 

Your feelings are completely normal. Just hang in there. You will get thru it. If you need to ask for meds to help with your anxiety please talk to your doctor. There is help out there, and it doesn't mean you are less of a woman for asking for it. 

Hi all  ...I had just turned 44 when I was dx'd stage 1 grade 1 ...1.6 cm lump......No nodes...It's been almost 2 1/2 years for me and i am just fine!.....That first anniversary is a nerve wrecker but it goes by and you are fine.........I started with Tamixifen then had issues had a total hyster and ooph......started Femara had major issues with that and now am on Arimidex, fewer SE's but tolerable.........I am not on any biphosphonates yet......I am looking forward to my 3rd anniversary Jan 15th, 2010.........

Dream I get aredia every 3 months.

HI kdholt,

I think that Anne said it all very well.

My diagnosis was 15 Aug '05 ... surgery 27 Sep '05 .... rads and AI Nov '05.  I was 57 y.o. It took a few years to understand and accept the changes in my life, but slowly the rest of the world came back into focus.  

Take heart that you'll be one of us old timers who help the next new member along.

"Never run faster than your guardian angel can fly"

Marilyn 

Debbie, I have been doing a lot of doctor shopping, trying to find one that believes in a holistic path. I am menopausal and I refused to take arimidex. However, I have been able to balance my estrogen levels naturally and my urine tests prove it. We have a lot of discussion on this on the natural girls threads and the iodine thread. We also discuss DIM and I3C. I do believe it is important to find a doctor who can take these tests so that you can see if it is working. One of my doctors is a chiropractor who got me on a good nutrition routine. She also takes my blood and evaulates my tests. For instance, I had really low Vit D levels, my former MD never even tested it. After several months of supplements, my Vit D level is not in a protective range. I also have a doctor who was a former obgyn who now specializes in hormone therapy. She has been evaluating my hormone levels and helping me to balance everything. We are constantly changing things as we see different results. The way I found her, is through the compounding pharmacist in my town.  I do not see any of my old doctors anymore, including my onc. All they wanted me to do was take drugs, and  I just did not see the point in that when at stage one, they only give you the same advantage statistically that diet and exercise do. Also, studies show that DIM or I3C do the same thing. So when, I say I do not fear a recurrance, it is because I am doing a lot of proactive things, that I never did before. I am careful about my exposure to all the chemicals out there, I cut out the sugar and crap in my diet that was causing me to feel so awful. I just do all kinds of things that make me feel better, both physically and emotionally. I do not believe a healthy body gets cancer. I always thought I was healthy before, because I rarely got sick, but I have learned that there was so much I was doing wrong. It is very empowering to feel that cancer does not control my life anymore. I pray all the time that others will find this peace.

Vivre-you're right, I'm still still close to all, still going through reconstruction and taking tamox., etc.  It seems as if there are constant reminders of having had bc, with the mastectomy scars and the hot flashes from the tamox, etc.  I shouldn't have said "never" reach any closure, because as you said many women do certainly get there.  And I'm sure I will too eventually.  My oncologist told me the process is a marathon, not a sprint!

 I guess what I was thinking was breast cancer (and really all cancers) are different than some other health issues where you have surgery and that's it, you're fixed and no need to think any further about it.  Just as an example, several years ago I had a misdiagnosed ruptured appendix - I became septic and it was a life threatening illness to be sure.  But surgery, antibiotics and a week in the hospital and I was fixed. Once I healed I never looked back (well, except being mad as heck at the doctor who misdiagnosed me!).  But now, even though I've had the surgery and am taking the prescribed medication, I just don't have that same feeling of closure.  But I completely agree with you in that thinking good thoughts, eating a proper diet and getting lots of exercise is key.  I've started with the diet, supplements and exercise, just need to get there with the postive thinking!  The wonderful women on these boards are helping in that department!!

Hug to everyone!

JanMarch-Yes having bc is different and I blame the media for that. All of this breast cancer awareness scares the crap out of everyone. As you said, when you have another life threatening illness, they fix you up, and you go home and get well. With cancer they scare us so much about a recurrance. Well, the truth is, we do not have to get cancer at the rates we do. Just because we got it once, does not mean we will get it again. There is so much evidence out there that proves cancer is preventable. That is why I stopped listening to the naysayers and started reading every healthy book I could find. I found them to be so heartening. Some of them, I read over and over because they keep reinforcing what I need to be doing to stay healthy. They are my motivation and my salvation. So don't believe them when they scare you. You will eventually look at your scares as a badge of honor. They will show you how strong you are and how much you have overcome. As the physical scars heal, so will the emotional ones. As I said, sometime, I hope you can all put it behind. Cancer made me a survivor and a better person. For that I count it as a blessing.

Debbie- go to themography.org for info on thermograms. Some insurance companies accept them, some do not. One of the things I plan to do is to start pushing for them to be covered. I think they will save more lives than mammos because they are safe and painless, and cheap, and more women will be likely to keep having them. I hated going for mammos but I do not mind at all doing a therm every 6 months. I can see right then and there if there are any changes in my breasts. It is all on the computer to  look at immediately. No waiting. Such peace of mind. To find a doctor in your area check the list at thermography.org. They are readily available around most major cities and even some teaching hosptitals are now doing studies on them.

I for one am grateful for the media exposure.  BC used to be something that was a source of shame for women.  Nobody talked about it, very little research was devoted to it.  perhaps now it gets a disproportionate amount of attention but at least it also gets resources for research and it has made a big difference.  There are too many people who believe that bc is not a big deal, that everyone survives.  Well 40,000 people died from it last year.  I knew two women who have died in the last few months -- young, fit, otherwise healthy women who left behind young children.  I think this message has to get out there until no one dies of breast cancer.

kdholt, you have an excellent prognosis.  You must know this, that rationally it doesn't even make sense for you to think about a recurrence with your stats.  But you have been through a trauma and its very difficult to think rational after this sort of experience.  If you find that the anxiety interferes with your enjoyment of life, get some help.  There is no reason to suffer and therapy can really help.