2017 Diagnosed-- A Place To Share "Whats Next"
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TaRenee— if your $20 OTC insoles give your feet a break, that’s great news!
I started wearing Crocs as I found their design to provide comfort to my feet. Not too stylish but I am looking for comfort over glam at this point!
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Dazzlingeagle— sending you hugs. Hoping you are finding some relief from Keytruda side effects and that your treatment is kicking cancer’s butt.
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It's been so long since I checked in here. It's great to see everyone's progress. I'm one of those people that never told anyone about my BC or posted anything on social media. My husband & I have relatives that have passed from cancer & other chronic conditions within the last 10 months. So lately he's been using my story as an example of hope & survivorship. Last month I participated in the ACS Making Strides Against Breast Cancer 5K and decided to put my story out there (on my donation webpage and on social media) as a survivor and an advocate for regular screenings and early detection.
Through this, I found out that 2 people I am closely acquainted with (one from a previous job, and the other sings in choir with me) were diagnosed with BC this year. They both had questions about the procedures, recovery, etc., and I was glad I could be there to answer them. However, I'm still pretty private about it. Now that BC awareness month is over I don't go out of my way to tell people. I just want to keep things normal. Sometimes when people find out you've had cancer they start acting different around you.
I guess my point in all this is to say that I'm glad we have a forum like this to support each other since we "get" each other. So thanks for sharing your experiences.
I am 13 months PFC and haven't yet planned my reconstruction. My PS wants to wait at least a year after the end of rads, which was a few days before Christmas last year. So I'll hopefully schedule it in Jan/Feb.
Other than the pending reconstruction I have been tolerating tamoxifen well. Lately though I've had leg cramps more often, and had a back strain that's taking forever to heal. Could these be tamoxifen related?
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sunny - definitely could be Tamoxifen related esp the leg cramps. Idk about the back strain. I took Tamoxifen for 4 years and Arimidex for 1. I was plagued with joint and leg pain and hot flashes. I ended the drug after 5 years per my MO. No more of those side effects thankfully.
Diane
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Dodgersgirl, I love my crocs. Yes the faslodex is instead of the aromatase inhibitors. My insurance is paying but I spent about two hours on the phone with them explaining I can’t keep taking the AI’s. Sunny, my teacher friend who takes tamoxifen has leg cramps as a side effect.0
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Annbee—. That is really good information to have as a backup plan for AIs. Thanks for sharing
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Thanks everyone for those words of encouragement.
I’m not sure how I would have made it through without your support. As castigame says only those who have gone through it can really understand. The hardest part is the emotional and psychological pain that we have to deal with after treatments are done.
Every day I look in the mirror I’m reminded of what I’ve been through. In March it will be two years from diagnosis. Hard to believe.
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pink_is_my_colour—- ohhh, so true. Friend tell me all the time that I must be happy that cancer is behind me. Well, except for the physical scars, mental scars, medication to take for years, SE from treatments and AI meds, etc, yeah it's so not over. Sigh
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Hi everyone, and thanks for checking in. I followed you all from the time I was diagnosed in June, but only posted a few times. For some reason I was timid to post until the end of treatment, but did PM a few of you.
I just wanted to say that you all will never know how invaluable you were for me, and I'm sure others that were more reserved and didn't post much either. The sharing of your feelings, the tricks that you all gave to help with SE's, the insight of medical angles and talking to your care teams were so helpful to read. But mostly, watching the bonding and concern for one another was amazing to witness.
I did really well all through treatment, both mentally and physically. I stayed positive and was able to abate most SE's with meds. I had a wonderful med team!
Recon has been another story! I had last chemo Nov 2, and BMX with expanders Dec 11. Infection set in and long story short, I am having DIEP surgery on Nov 29 (been flat with excess skin and fluid build-up since May).
Aside from that I'm doing alright. Life has been pretty much as it was before DX. I was TN so no HR. Still have some aches and pains at times, and wonder if our bodies will just always feel a little different from all the poison we were given? But overall I feel pretty decent.
Good luck to all on the recovery journey...You are an amazing group of strong, beautiful and caring women, and I'm so thankful to have found you!
Vickki
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Vicki, glad you posted and shared your story. As you indicated, you may never know who you touched and helped because you shared
Best of luck on Nov 29 and please let us know how you did.
Glad to have you as part of our topic hereon BCO!
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Vslush, good luck with your journey, as well!
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Happy Thanksgiving to you all!
I am thankful for BCO and you all. Cancer journey is an odd journey that friends and family don’t always understand. While life goes on, it is so much better with you guys here to listen to my experiences, share your experiences, and just give me a place to vent or question. You guys are the best... thank you
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Happy Thanksgiving to you DodgersGirl, as well as everyone on here. I think you described the feeling here spot-on. Thank you, and may the holidays be filled with blessings for all of us, wherever we may be on our journeys.
Vickki
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Hello everyone; I am just checking in to see how you all are. The last three months have been SO busy with projects and funerals to go to and another recent CT and Bone Scan; the CT scan came back as negative for disease, and my oncologist did not anticipate anything with the Bone Scan; in fact, she said she thought they were overstating the possibility of metastases in the spine, as she believes it is calcium build up because of osteoarthritis. I had the Scan yesterday and she said if there was no change, she would not order any more. So my "happy news" is that I am 16 months past surgery and 11 months past radiation therapy, and everything seems to be good. That doesn't mean I won't worry about what the next scans will show, but at least I can "rest easy" for a little bit. This has been a crazy week with four appointments in four days, but hopefully we can sit at home for a while and have some quiet time. Hope to have some free time to catch up with everyone these next few days. Thinking of you all, and hoping those of you who are celebrating Thanksgiving today have a very good one.
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53Nancy— that is terrific news!! May you continue to be NED!!
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Thank you Vicki and DodgersGirl, you’ve put into works my thoughts re BCO and everyone. I didn’t follow when I went through treatment but find it helpful and comforting that everyone is so kind and helpful.
Happy Thanksgiving to all
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Been a while since I stopped in here considering that 2017 was my 'annus horribilis' , to quote the Queen. I see people talking about joint pain. To that I say yes, yes and again yes! Tamoxifen can be the culprit in joint pain. Prior to breast cancer I was quite a limber, bendy, stretchy person with no problem beyond flat feet. Now I'm like a creaky old lady. I have been doing some work around the house lately that requires me to be sitting on the floor for extended periods and I tell you, getting down is one task then getting back up again is another! I have to get up (and down) slowly, I unfold like a praying mantis, don't get in too much of a hurry, let those hips and knees straighten out. Sheesh! This is tamoxifen. There is no way I can go from flexible like a noodle in 2016 to a creaky old codger by 2018 and put it down to natural aging. Natural my ass!
On the up side tamoxifen completely and without a trace eradicated my evil period. Boom! Gone! And good riddance I say! Not a twinge, not a dribble, not a smidge of suspicious mucous. Hah! Take that you stupid periods!
The joint pain is not too bad in the day when I am moving around, but I really notice it in bed at night. Rolling over hurts. Everything hurts. And lately I find I can't walk right. There is no other way to describe that other than I don't walk like I used to. It's like my legs don't work the same anymore. They feel wooden. Until they get a cramp, in the dead of night, and I flail around like a possessed person and cry and try to walk it off then it hurts like a mofo for a week after. Ugh.
Glad to hear so many are getting on with things. I am too. I have moments when I don't think about cancer at all. Then moments when I realize that friends I made at the cancer lodge during radiation have died from the disease. That sobers me and stops me in my tracks. So I don't think about cancer right until I DO think about it and when I do, it barrels in like a train and knocks me down. I get knocked down, but I get up again ... going to listen to that song now. Take care all!
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nancy-congrats on your scan. In 2 weeks, it will be 1 year since my diagnosis. Wow, what a year! BMX, 6 rounds of TCHP, 25 rads and will continue H&P until end of January. After that, no tx. Just Scans and wait and see. I tolerated my txs well. Most of the time, I don"t think about my cancer, until I do. I do experience minimal neuropathy from taxotere and possibly herceptin. Hopefully, reversible. Monday I have cataract surgery on my right eye. I am suffering from DeQuervain syndrome in my right thumb. Fancy word for thumb overuse. I had cortisone injection about 10 years agoin my R thumb and surgery in the L thumb with very good results. . I'm rambling. I spent the past 10 days taking down crates of Christmas decorations. I've had a great time sorting through my decorations but it has taken its toll on my hand. Tonight I'm experiencing severe pain in my right hand and wrist from De Quervain syndrome and OA. My last injection was 8 years ago so it's time. Tomorrow will be a new day and I have a 5k first thing tomorrow morning.. Correction, I have a 5K in 2 1/2 hours. Yuck. Forgive me my list of complaints this early in the morning.
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Happy Belated Thanksgiving to you all.. Also wish and pray to stay the heck away from all bleeping related issues for at least 50 yrs!!
On a positive note. I am thankful no period. I even had a private tampon burning ceremony with a big glass on wine. I am so thankful I can reroute money on feminine supply (at least $40per month) to something else. No losing sleep from bad period. and no collapsing at work either. (I literally did crying at the same time)
And no bra!!! I go flat 24/7 (personal choice). I hated bra to begin with. It was such as struggle to keep my bra on whenever we had guests. Again I rerouted bra money to something else.
Lastly I am thankful for an angel tree tag which listed 30 diff items 20 of which were easily identifiable. A few of the 20 items were about $5 to $7! I am no bible thumper but she even wanted a bible.. All this means I can assemble a big Xmas shopping bag at reasonable price! off to Walmart to get ribbons and wrapping papers.
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sylphium, so right you are. When I have been so down about things, I think of the wonderful support that I've found here. I have very few friends who are willing to ask how things go, and I've decided that, if I do have a recurrence, I am not likely to say anything until things have progressed to the point where they are noticeable. I am at peace still with refusing chemo, and feel that still being NED justifies my decision.
DodgersGirl, hope all is well with you; I have a lot of catching up to do. My husband and I have been saying that 2017 was my year to deal with health, and 2018 is his. He had experienced total loss of hearing in one ear two years ago, and now has been told he has considerable loss in the other, so is waiting for referral to an Ear, Nose and Throat surgeon to explore the possibility of surgery. And yesterday, we were informed that he has severe obstructive sleep apnea; no wonder that he is so tired all the time. They gave him a CPAP machine one night, and the report showed that he stops breathing 58 times a minute! So now the next step is to go to a sleep clinic for a night; hopefully, it will be early in the new year. Now it is my time to be strong for him.
jo6359, you have been through SO much; sure hope things start going better. I no longer where bras; I find that cotton camisoles that I can wear under a top and sweater or jacket, is much more comfortable and still gives me support without hurting. When I was a working girl, I always wore bras out in public, but they always came off when I got home. I have not worn one in months now.
Lots to do, so must get busy; have a stellar day everyone!
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Hello everyone and a belated Happy Thanksgiving to all who celebrated yesterday by overeating! We had turkey, baked potatoes, two kinds of stuffing, pumpkin pie, and enormous quantities of wine. I regret nothing!
All is well with me; six-month mammogram and 12-month MRI were both "clean" so yay for that. Like 53Nancy it seems to be my husband's turn for illness since he has developed sciatica and is going to weekly physical therapy sessions with a hope to avoid surgery. I think he will.
Best wishes to you all!
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nancy- I shouldn't write at 4 in the morning. The point I was trying to make its it has been quite a year but it's also been a really good year. The point I was trying to make was that my life was pretty much the same as it was a year ago in regards to diet, exercise and socialization. Of Course there were a few adjustments. Being bald and flat wasn't traumatic. I thought it would have been extremely difficult but whatever reason it wasn't. Occasionally I will pad my bra but for the most part I go flat.. But my hair is growing back so now I have a men's short hair cut. I've started going out in public without my beanie . My life is normal again but having cancer will always be a part of my life.
My thumb feels great today so I'm a new person. Running the 5K this morning with zero sleep was a little bit of a challenge. LOL
Georgia-- congrats on the clean MRI results.
Mimi- I love the angel tree program. You are very brave though to go out to buy wrapping paper and ribbons on Black Friday. I have a closet filled with 90% off of Christmas wrapping papers ribbons and Christmas bags and boxes from last year.
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Jo6359, what is DeQuervain syndrome? I know you wrote it’s overuse. I have major issues with my thumbs. Sometimes I can’t even hold my phone (I know, 1st World problems) Congrats on running 5K this morning! Good luck Monday with your cataract surgery! Let us know how it went
Runor, my back aches from just reading your description of the manual labor on the floor. Not sure I could get up from the floor as sore as my knees are right now I do notice the stiff joints worsen when it is cold outside. As I read your post, I am shaking my head in agreement — some night it hurts to roll over in bed. And I seem to always be aware of the “pre-leg” cramp so I can get out of bed before it hits
Georgia1, Congrats on clear scans!! Your thanksgiving dinner sounded great, too. Hoping your DH gets better soon from the sciatica pain. PT can do wonders for sciatica.
Castigame, love the angel tree. I didn’t participate last year as I was still doing rads and skin breakdown was freaking me out. Hope to do angel tree gifts this year I 2nd the comment about hitting Walmart on Black Friday— brave.
53nancy— hoping your DH gets good news about treating hearing loss. Hoping the cpap machine works. My DH loves the sleep he gets now that he uses a cpap.
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Dodgersgirl-painful tendons on thumb side of wrist. The pain extends up the radial side ( thumb side) of wrist and forearm. Common S/S are pain wuth fist closure, wrist movements and grasping objects. A quick test is placing thumb across palm. With closed fist over thumb slowly turn your hand towards the ulnar side ( little finger). The pain is usually intense. Of course further diagnostic testing by your Orthopedic Specialist is required. Initial treatment is rest, ice and splint if necessary. A simple hand brace that isolates the thumb usually provides relief. With a few techniques and exercises the problem is generally resolved within a few months if not sooner. Chronic overuse can require cortisone injections or surgical procedure. There are other hand conditions which can mimic that's why a trained professional needs to do the diagnostic workup. We are seeing more cases because of individuals need to constantly hold on to their cell phone, computer work and the love for gaming. LOL
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jo6359– thank you for sharing that info. I don’t have pain when following your “test”. I know I have OA and carpal tunnel in both wrists. My AI pills seems to greatly increase joint pain, stiffnesd, and weakens my hand str
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dodgersgirl-I have heard the ALs can cause a lot of bone and muscle pain; as well as exacerbate pre-existing conditions. So sorry to hear that you're experiencing all that pain. Is this the medication you have to stay on for 5 to 7 years?
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jo6359–yes, I expect to be on AIs for a LONG tom
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Happy belated Thanksgiving!
You all have been such a wonderful support system for me over this past year. Thank you all for listening and helping me along this journey I could not have gotten this far without you!
My good news is that MRI came back clean. I got the call the day before the election. I sure am glad that my left breast and MX side not only voted early but also voted for NED!
Thanksgiving went well we had a small family gathering of 6, but in the middle of dinner the phone rang it was from my PS office reminding me of my appointment this coming Monday. I though my boob issues would have left me alone for the holidays I guess I was wrong!
So how many of you are still eating leftovers and who has started on making the turkey soup? My dad started making is turkey soup today.
Sending lots of Love and Hugs to all,
Sara
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sm627– Congrats on good scan results!
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sm627
Congrats! I go in for scans on Wed and Thursday this week.
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