Stage 2 Sisters Club
Comments
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Hi Nisa,
I see Dr. Sharon Giordano Onc. at MD Anderson. I like her she answered all my questions. Since my spot was so small the use of Tamoxifen has been left up to me. She gave me the reasons to take it and then the reasons not to take it, and then said, it is your decision.
We talked a lot about bone health, supplements, and diet. So, I am very glad I made the decision to travel twice a year for my follow ups there.
They are very organized and it runs very smoothly.
Sharon
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Nice to see this thread starting. Its been almost a year since diagnosis and I'm just starting to post. I can echo some of the sentiments out there. I am in the what now or wait and see stage. Kind of went thru a hard time adjusting to this new normal . Still am. Body and mind is not bouncing back as quickly as I would like.
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Count me in! I finish up TCH in 2 weeks and then on to radiation. Happy to be part of this group.
Annie
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Reporting in... Stage 2, Grade 2, 2 years out and doing well.
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Checking in, Stage 2A, grade 3, 2 nodes + and dx at 34. This month is my 1 year out since first diagnosed. Can't believe how time flies when you're 'having fun' they say!! Just 5 weeks out from BMX and doing great!
Thanks for starting this thread for us 2ers.....
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Glad your doing well Traii!
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I am delighted that Stage 2 Sisters (and their husbands and allies) are finding this forum! We have so much to chat about. For me today is day 4 of chemo so I am going downhill with SEs and will be returning to baseline early next week. During this time, reading your posts and feeling conected to this community is so helpful. Thanks everyone for being there....Nisa
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Hi all! Stage 2b here!
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I don't know about everyone else but I find that I am always trying to find research based on my exact cancer. I know that it is unrealistic to find statistics specific to me but I can't help but continue to look. I realize that we are individuals and not statistics but I still continue to look. Anyone else have this odd obsession? Happy Friday all!
Jo Anne
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Yes Jo Anne! You are not alone, I do that too. But we need to listen to ruthbru and relax a bit
Maybe we should allow ourselves to be obsessive once a week?0 -
Yes, Jo Anne, I definitely do. Because mine was so rare I try and find out as much information as I can but I really do not find much.
hope your side effects aren't too bad, Nisa0 -
Thank you for starting this. Had surgery 8/1; drain removed yesterday, and I found an additional lump.
Very, very bummed out. My surgeon is away. I'm supposed to get the port Friday. I'm HER2, 2b.
It's about 3 inches from the scar from the lymph nodes were taken.
This is mean shit, isn't it?
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Maziel, there is a chance it is something related to new scar tissue. It has happened more than once. I can't imagine your fear today. Thinking of you...
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Thanks Nisavilla and planetbananas, it is nice to know that I am not the only "crazy cancer lady" out there. Lol! Here's hoping Maziel58 that the lump is b9, please let us know how you make out. I have lumps along my mx scar but non of the dr's seem concerned so I refuse to be either. Happy weekend all!
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Hi all! Thanks for starting this new thread! Although I'm not on BCO as often as I used to be (coming up on my two year "canciversary"), its nice to see something for Stage II gals! Looking forward to some informative, enlightening discussions!
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Thanks for starting this thread for us Stage 2 gals! I'm now 3 years out and had good diagnostic mammo in June, so all appears to be well. December will mark 3 years on Anastrozole/Arimidex, which I hate but take anyway. Didn't have chemo because of Oncotype DX score of 11, but had 6 weeks of rads.
Maziel, all good wishes that the lump is just scar tissue and nothing to worry about. Please let us know how it goes.
Added this to my favorite topics, and thanks again. We've needed this thread.
Kathy
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Hi Kathy, I am always glad to read updates from those who are some years out...yeah to you!
I will be going on Arimidex next month. What has been hard about it for you? I was told I will be on it for 10 years.
For everyone a year+ out.... at what point did fear of recurrence go away, if it did?
Thanks, Nisa0 -
I too am Grade 2 and am curious about recurrence? I started the Arimidex a month ago,and I guess all of us are different with our SE's? I'm more nervous about this med and recurrence. I can't seem to get a grip on "moving beyond"..........Hope all of you enjoy the gift of today.............
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Nisa and Patti, I doubt that the fear of recurrence ever goes away. I'm a wreck for a week before a mammogram, and with the very first one after my surgery they found calcifications. Had a stereotactic biopsy and was a wreck through it, but it was benign. I also had ILC so that's scary too.
Re arimidex, I find that I cannot walk as long or as far as before because of hip pain. I have stiffness upon getting up from a sitting position, or out of bed in the morning. Arimidex is said to be hard on bones. I have osteopenia, but am holding my own with Calcium and D3. There was no change between the last bone scan and current one either. Some have hot flashes with it, but after a few right at first I have none now. The worst side effect for me is thinning hair! But, I look at this drug as a little more insurance against a recurrence, and so far so good. It took me about a month to get accustomed to it. Good luck!
Kathy
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For those of you just starting with an anti-hormonal, there should be a lot more information by the time you get to the 5 year mark. But for now, with her permission, I am copying a recent post by a friend of mine, Natsfan, who recently posted this on the '5 Years & Done' thread.
"Had my visit with my MO yesterday and we discussed the 10 AI year issue. She said it's being studied, but none of those studies has finished, so there's no change in the 5 year recommendation at this point. She said that during these studies, they do a check at about the midpoint and if there's a clear benefit shown to the tested therapy, they end the study right then and there and start giving the therapy to everyone in the study, so as not to deny the control group the proven benefits. She went on to say that some of the 10-year AI studies are beyond their midpoint and have done this check, and since the studies have continued, the results thus far aren't showing a clear definitive benefit yet to a 10-year plan. She said once the studies are finished and published and if they indicate a benefit to 10 years, then we'd discuss going back on Femara at that time. But for now, she said consider yourself free and clear from Femara. Woohoo!"
You never get totally past the fear of recurrence, but it does get better the further out you get.
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I haven't been around the boards for a long while. Isn't it odd how worries about one's job, other bad health concerns, can sometimes trump cancer. Or maybe not really. It's always in the shadow. Anyway, I'm happy to have a Stage II forum. Thanks NisaVilla. I'm about 3 1/2 years in on Tamoxifen after lumpectomy, chemo, rads. I'm overdue for an MRI and have a pessimistic feeling. I have to schedule this month.
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Cary1, put it on your mon to do list to make your MRI appt so you have it and try not to worry about it till you get the results. No point in worrying bout something that may not be a problem. That being said, I too am constantly worried bout recurrence. I'm almost at the 1 yr mark and am told recurrence symptoms can be anything that is a nagging problem that won't go away. Well, I've got plenty of those problems since chemo so it's made me a bit of a hypochondriac. I'm constantly reminding myself to not worry so much. But you are right, it is always in the shadows no matter how busy you are.
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I was, doing well not worrying about a recurrence until I developed an infection in one of my implants in June. I spent time in the hospital and the first blood test after I was out had my tumor markers up by 19 points. since I was told the markers could be up from infection they are not sure what is going on but I am having a PET scan on August 26. They're waiting until then to put more time in between the infection and the scan.
Yes, Maziel this is mean shit! best of luck to you!0 -
Dear PlanetBananas, Good luck with your PET. I'm hoping it shows nothing worrisome and praying you can be free of stress while you wait. Try to do good things for yourself to keep your mind busy. See a funny move, walk, Yoga.. etc.
I'm curious about your screen name..planet bananas.
I'm 2 years from surgery this month and worry all the time about a recurrence. I wish I didn't but I do. And I have good prognostic factors so I know it would be rare to have an issue ; it's just always on my mind. Knowing my nature, I'm not sure time will get rid of the worry. UGH.
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Thank you, Bevin. I have a small trip and a birthday in between so at the moment I am focusing on those. I have a feeling I will be ok until the day before where I have a few restrictions - no sugar or excercise, then the day of, fasting.
I don't know how to not worry - all the advice seems easier said than done. I think it's normal to worry and there are good days and bad. I find if I am already stressed I will worry more.
You asked about my screen name: A while ago (I can't remember now how long but at least a year) I was watching a stupid reality show, I think it was Basketball Wives. The women were fighting and one of them said something like "She is on planet bananas" and it just struck me as funny. When everything started happening, I joked and said I must be on Planet Bananas and started using it as my user name on message boards and called my blog Planet Bananas too.
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I am 45 and pre-menopausal. I am getting zoladex implants monthly (to shut down my ovaries) and am on Arimidex. I take calcium and Vitamin D. My onc stressed weight bearing exercise and I find if I don't walk regularly my bones ache and I get really stiff.
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I believe that exercise is THE key to so many things: stress relief, helps lose or keep weight off, deal with treatment SEs, keeps bones healthy. reduces recurrence risk more than anything non-medical, reduces the risk of about every other kind of health problem, makes you look & feel better, allows you to eat more etc. etc. If you want some exercise buddies, there are a couple great threads in the fitness forum. The one I check in with is 'Lets Post Our Daily Exercise'. A great group of ladies in all stages of treatment & beyond. And there is a newer one called something like, "Getting Back into Exercise after Treatment" (or something to that effect) with very nice ladies too.
Another thing that I have found helpful in managing stress are to keep really busy, and to make plans (like trips, get togethers with friends etc.) so you are thinking of and looking forward to specific things in the future.
Another thing that will sound silly, but worked for me was that I bought a 'Reduce Stress through Hypnosis' CD, and it really worked amazingly well (I was very skeptical). So there are CDs like that, and other relaxation, meditation type CDs too.
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Kyliet- Your diagnosis is very similiar to my wife's except she is post menopause so she will do the Arimidex after chemo and rads, Did you do chemo as well?
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Ruthbru, I completely agree! I try to do half an hour on the treadmill. Even if I just do that on a slight incline it helps the side effects from the tamoxifen greatly. I find on the days that I don't those are the days I have more hot flashes
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JBD53 question reminds me of one thing that shocked me about cancer treatments. That outside of the 23 NCCN centers where they must follow national guidelines, the variability in treatment for very similar cancer profiles seem to result in different treatments. Science no longer thinks that "every cancer is different because every person is different" yet oncos not governed by NCCN seem to treat patients so differently. As a cancer patient, do you think this is a good thing?
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