Stage IIb and 5+ years out, anyone?
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I will have routine mammograph this month, right before Christmas. Hopefully another clear result, praying..
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ctmbsikia—I will be here to read that all clear!
Prayers of strength to you on your way to a full recovery. My wife’s experience has been that with each passing day, this lousy chapter feels further away and looking forward becomes easier.
God bless
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Colt45 thank you for the page suggestion. I'll have to check it out on here especially since my anxiety is back up. I've been on tamoxifen for a month now and I'm having more right sided back pain then normal and definitely having hip and shin pain on the right side too. Overall my bones ache a lot now especially my legs but I'm just paranoid something else is going on so I think I should check out the other forum. I also went back to work do the increased pain could be from that... Exchange surgery is coming up in 3 weeks. I just hope long-term survivors keep checking in here. I know it helps when I read about them.
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Hi Ampmusic14,
Were you able to find that thread about scares that turned out to be nothing? I will try to find it and bump it.
I always like hearing from long term survivors, too.
My dad’s cousin was Dx’d at age 32 in 1986. I do not know the details other than she had a BMX.
She’s 66 now. Went and got her PhD. I think some of the best advice we can give or get is to just keep moving forward. She hasn’t wasted her time—and good thing, because her Dx was over 1/2 her lifetime ago. Imagine if she had just shut down. She is a friend of mine on FB now,but we never talk BC. She’s having a great life.
You will, too.
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Colt45 yes I found it, thank you. Most of everything I was feeling went away. I wonder if they were just weird affects from the tamoxifen. I stopped it for my other surgery and have been feeling better, but will have to restart it soon.
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Colt45 - thank you so much for posting, so encouraging! I’m 2.5 years out now and still in the worry stage although I feel fine. Can I ask what treatments your wife did? She’s such an inspiration.
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Dear Ampmusic,
Just wanted to you know that it's now more than 11 years for me and I am living large. Successes too numerous to mention.
I have Nordic skiing in the Cascades and Methow Valley planned for this winter, and cycling in Scotland and Idaho planned for this coming summer. I also have my own consulting business.
Had a lovely Christmas and New Year's which I spent mostly outside, freezing my tail off. Fun and memorable times. I recently slid into the Breast Imaging Center after a day of skiing with work prior to heading out to the ski trails.
So a full and wonderful life. Wishing you the same. - Claire
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Great Claire! Keep going and be safe and may you be able to travel and do what you want COVID free.
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I am one year out now, just got clear result before Christmas!
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Ampmusic14,
I’m glad you’re feeling better. Our minds go to the worst places. I’m glad this seems like another case of more bark than bite. It usually is. With the Tamoxifen, I wish you good fortune with it. However, there always seems to be options with Tx (switching to an AI, etc.).
I’m sure you can explore those with your trusted doctor if need be.
Prayers for continued healing and a full and speedy recovery following this detour.
God bless you
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Hey, PebblesV,
My wife opted for BMX after 2 unsuccessful tries at clean margins with lumpectomy. Turns out her tumor was multifocal, so BMX was her best move to get clean margins. She did 4 rounds of dose dense AC (Red Devil) and then 12 rounds of Taxol. We got 4 opinions on Rads and she opted not to do them. That process was excruciating. But you collect all of the information you can for your specific case—make a plan with the best team you can assemble—and don’t look back. She started Tamoxifen and tolerated it well, but after a couple of years, she experienced a thickening of her uterine lining and—because even prior to BC she had ovarian cysts—she opted for a laparoscopic hysterectomy and switched to an AI. She is doing very well. The 1st few years were tough with worrying. But with continued healing, time and more and more good checkups the worry lessened. It helped a great deal to make plans. Things will get better for you as time passes.
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Colt45 - thank you so much for the update. And so wonderful that your wife has had you by her side through all this. My husband Robert has also been amazing and instrumental in my recovery and staying strong throughout treatment!
Claire_in_Seattle great news on 11 years out, inspiring!
cathy67 - Congrats on being 1 year out and in the clear! Great way to start the New Year.
I am 2.5 years out now, clear but still in this fight.
Happy New Year all!
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Thanks PebblesV,
I noticed your diagnosis date was almost one year prior to mine, so I am 1.5 years out already! Sounds we shall count from the very beginning of this terrible news, not the ending of all the treatments except for hormone. Only 3.5 years to five years milestone!
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8 yrs. One recurrence that was 5 yrs ago...but if you told me I'd be 8 yrs and getting ready to do the boy scout merit badge for hiking challenge.5 mile hike ck, 3 10 milers, a 15 and 20 all in the next 3 months before our Zion trip...son was 2 at diagnosis...hes 11 now and we are doing this together..in the middle of winter during a pandemic knowing we WILL get it done...Id say take it!!!! Neuropathy. Lymphedema, bad knee, insomnia, covid, you won't. Stop. Me.
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Congrats!
7of9, how did you get recurrance on your left breast after 3 years of BMX? Once the breast is gone, how can cancer comes back in breast area?
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hiya gals.
My last recurrence at stage 2B was 2012! My cancer type had changed from ductal in 2002 to lobular.
Still going strong, albeit was a bit worried with hip and high right midpain, but looking good. Issues so far are non cancer related..wishing all of you many healthy yeqrs ahead.
Astrid xx
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Thank you everyone for your replies! I just love hearing success stories. I'm still early on in my treatment in a sense. This May will be one year since my diagnosis. Colt, like your wife, I'm worried about uterine thickening from the tamoxifen, but I don't necessarily want to rush a total hysterectomy because I'm so young. Chemo shut my ovaries down right away when I started in July. No period yet since before I started. Claire - it's so nice to hear that you are 11 years out!! I've spent the last 9 months going through numerous surgeries and treatments I'm eager to feel better so I can get my energy back and start working out. Very thankful for this thread. My cancer was primarily estrogen positive and very high estrogen. The thing now that has my anxiety high is knowing what to eat or not eat and what supplements are safe and not safe.
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Just confirm with your doc and they can tell you if ok or not. Some know re not. Hang in there!!!!
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I wouldn't overly stress on the food part other than do what's good for your general health. From everything I have read over the past 11 years, exercise is the crucial one. I participated in the Health Habits study whose results are cited on BCO in one of the news updates from late last year. Read the one on exercise. Just astonishing. (I did over 5 miles of walking yesterday once I got home from work. I have a bright yellow ski jacket so that I am visible when crossing the iffy intersection.)
Supplements are also something to be wary of as can interfere with the effectiveness of hormonal therapy. I made sure that I double-checked with my medical team in selecting what I take on a daily basis. I recently added in eye vitamins on the advice of my optometrist, as things were going south in that area. I do see an improvement in vision, much to my surprise. I was taking them to make sure that things didn't deteriorate any further. I am elated.
Anyway, the snow should be great this coming weekend, so I am headed for the ski trails. Like taking a blow torch to the lard, even if I eat more than advised. Thinking steak time. Made steelhead for dinner last night. YUM!!! Reprise tonight.
Need to get rolling as lots to do and I am basically nowhere. But that is fine. The sun is out and I will get to see the mountains in full glory. Hoping to ski the really fun Nordic trails on Sunday.
One final thing on exercise. Because I am fit, I avoided any issues with body image. This was confirmed a few years when I was pursued by someone 17 years my junior. We met doing an endurance ride....he was checking out the rear view in spandex. A great time, even if a bit briefer than I would have liked.
One of the great experiences of my life. - Claire
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Claire, thanks for the sharing.
You are doing great all the way so many years, and you come back here to encourage us, you are my model. I am 1.5 years out now, and doing exercise every possible way. One day when I reach the milestone years, I will also help others just as you are doing today.
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Thanks again for sharing. I'm hoping I can get my diet under control. I still splurge here and there... But I'm making some changes to organic things. I know exercise is the most important factor and I really can't wait to get back to it!! I still get a lot of anxiety and fear about reoccurrence and I think exercise will help ease my mind.
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I started to train with personal trainer after treatment, and I lost 15+ pounds. And I can run 15 to 20 minutes now, I never ran after I left campus, 30 years no running, cannot believe, yes, we can do.
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HELLO! At the last blood test I had an increased alkaline phosphatase.Has anyone had this before?THANK YOU.
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Hi Diana, yes a couple of times, but not too over the normal range. Are you taking an AI? Just my unprofessional thought, I think since we know it effects our bones it may cause the elevation in in alk phos. I don't worry myself with it too much, as the MO isn't concerned. It could also mean something may be up with the liver. For me, though, my other liver readings are in range. Is you level really high, or just slightly high?
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Double check and make sure your MO's office has received your lab work and is watching it. It is a liver function and meds are filtered. You may need an adjustment. Just make sure they have them so they know. Good luck.
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My alkaline phosphatase decreased. Thank you! (...)0 -
Good to know! I know they will keep watching and it is one they check all the time.
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I just came on here and saw this thread. I know I am late to the game. Triple pos here back in 2010, still kicking and no recurrence. (Knock on wood!!!)
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nora_az,
Congratulation! You are my hope, will have mammogram next month.
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Ten years this year for me surviving Stage 2B, ER/PR+, HER2-, 1/7 nodes. Yes, I still scare myself silly sometimes wondering what that bump means or that new bruise. The fear never really goes away, but you learn to deal with it better and forget it for long periods of time. Still hate-hate-hate bloodwork and scans. My mammogram every year gives me the willies, even though I'm fairly certain each time that I will be alright. Still eating everything in moderation and exercising (marathon bike hikes). And since wine is one of my pleasures, I still indulge, along with the occasional bourbon. I didn't go through hell in order to not live life as I choose.
Cheers!0
