scared about increasing stage

bcisnofun

Hi to all of you kind souls.  I'm half way through chemo and was doing really well.  I think hormones are wacky right now and I'm just not bouncing back emotionally or physically this week like I had hoped.  A friend of mine who is triple negative just found out that hers has metastasized and that has me very sad for her and worried for me.  My med onc doesn't do pet scans to rule out spread because he says it misses small things and shows things that aren't cancerous.  I'm worried that I think I'm stage 1, but how would anyone know if you're not stage 4 without testing?  I have an appt with a counselor on Monday to try to help me through this time.  Can anyone give me any advice?

1Athena1

My advice sounds almost callous in its simplicity, but I hope you take it in the deepest sense: Don't worry about anything before its time. You or I could end up dead of a heart attack tomorrow. You have to erect an artificial "no worry" barrier somewhere. Your med onc is doing what many are these days. Metastatic BC is incurable anyway; early detection doesn't change that.

Granuaile

When I asked my MO how we could be sure I don't have cancer cells floating around in my body somewhere, even with A/C, Taxol/Herceptin, rads, Tamoxifen and whatever else is in my future, he said, "We can't. We'll know you're healthy each time you show up for an appointment and have no signs of cancer." Treatment is a sort of a best guess scenario based on what's been found to work well in the past. I really don't think about my stage at all, except to thank my lucky stars that being at IIIA and otherwise totally healthy meant I qualified for some very aggressive treatment options. I agree with Athena - there's only so much you can worry about.

peggy_j

I agree--it can be scary worrying about the "what if" scenarios. Have you talked to your docs?  I talked to my BS after my surgery (as we reviewed the final path report) and she said with a small and grade 1 (slow growing) tumor and 0 nodes, it's very unlikely that it spread. The pathologist studied my nodes under a microscope (yours probably did too) and there aren't even any micro-mets. My BS said there are no guarantees but this particular prognosis is as close to a guarantee as we get.  Don't forget, there are trade-offs doing all those tests; the false-positive, as someone mentioned, plus a full-body PET scan exposes you to extra radiation. My sense is that it's not worth-it unless they think they may find something. My understanding is that triple negative is much more aggressive and there are fewer "tools" to help.  I'm glad you're talking to a counselor. I think your concerns and fears are  real and...realistically, your Dx is still so recent and you're still going through treatment. It's scary. So I think it's good to acknowledge your feelings but it might be helpful at some point to get a realistic assessment from your doc--from what I see, your prognosis looks very favorable.

Madismommy719

Every time I have a headache now I immediately think brain mets, my tailbone hurt for 3 days and I was sure I had bone mets.....I think it's totally normal to worry. We've all been through SO much just getting our diagnosis and working on getting rid of that.... I personally no longer trust my body anymore. I was supposedly a healthy 35 year old just a few months ago but lo and behold I was walking around with BC growing in my body???? It's hard to not worry.....hopefully talking to someone helps you. You just have to keep trusting your doctors and take it one day at a time. And remember that none of our BC are alike. Which amazes me because how many ARE there?



now come to Chicago and I'll give you a real {{{{hug}}}}



Jenn :0)

mommichelle

I completely understand your worries.  I too had a very small invasion and no node involvement.  I worry about everything from small headaches, itchy feet, random cough, pain in my hand.  It seems that no sooner does one area of concern get resolved, another one pops up.  It is crazy.  I almost feel like my senses are too in tune with every feeling in my body.  I don't remember what "normal" felt like.  Maybe I always felt like this and just never realized?  I do also know that with everyday that passes, I try to worry less and less.  I do some times tell my self t hat no of us knows how much time we have here and even though I HAD breast cancer, I could still die tomorrow in a random accident.  Treatment is hard to go through and there are a lot of emotions that come with it.  Hang in there,  Know that things are in your favor statistically, and even though you do see some people progress, alot of times you do not see most of the people who are fine and living their lives.  We should start a pact that every year on your diagnosis date you pop in to tell everyone you are still here.  I wonder how many people 15, 20, 25, 30 years out would show up!  I bet a ton, and treatments years ago weren't nearly as good as they are now.  Try to relax...focus on getting through your treatment knowing you are doing everything you can do to fight it!  I definitely know easier said then done, but try not to waste a single minute worrying.  Enjoy every second!

peggy_j

I agree with mommichelle. FWIW, I know a woman who was Dx'd 30 years ago and after initial treatment, never had an issue. Back then the Tx was Mx but no hormones. I also know several women who have gone 15+ yrs and are fine. So the long term survivors are out there but...not spending time on BC.org!

edwh001

Hi bcisnofun, I'm 5 years clean. Our cancer seems to be similar. I still worry but try not to let it control me, I am also in therapy and it has helped me alot. I know one survivor who has been cancer free 40 years and many 20 plus years survivors.

Emmy