2017 Diagnosed-- A Place To Share "Whats Next"
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Dazzlingeagle—. Omg, so sorry you had to endure a rad onc without skills to talk to people. Makes me want to drive out to your location and put him in his place. Rrrrr.
Sorry for the confusing information thus far on the recurrence. What little I have heard about small cell carcinoma, it is known to respond well to rads and chemo so hoping you get the best outcome possible.
As others have posted, please let us know how we can help. You will have your pockets full of your friends here who will virtually go with you during your treatments.
Please post as you can. We all care and sending you hugs
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I love the thought that every day is a gift; it is so true and I must not forget that. I got a phone call this morning and my bone scan is tomorrow! No waiting! I don't see the oncologist until the 18th, but can live with that. Will probably not be given results until then. I am just keeping everything crossed that it will also be clear. The CT report done on May 25 indicated basically no change from the scan done last Fall, but from what the oncologist's office said this morning, this scan is a six month follow-up, so I have promised myself I am not going to go around anticipating the worst. Saturday was a really bad day for me, with pain all through my body and I was thinking - how do you know the difference between joint and bone pain? But Saturday was VERY cold, windy and raining, and by Sunday a.m. I had no pain, so I am blaming it on the weather.
Thinking about you all and will be in touch. Hugs!!!!0 -
53Nancy— ref your bone scan, is it a DEXA scan to see how strong your bones are? If so, that test is a piece of cake. Nonetheless— hoping you get only good news.
Sorry about the pain over the weekend. Glad to read that you felt better by Sunday. Those nagging questions about every ache and pain SUCKS.
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DodgersGirl, I think it is a CT scan; the oncologist says that it will look more close at the bones than the general scan of the body. I had a bone density scan in January to check for osteoporosis and there was no indication of that. The body scan last fall was to check the body in general, and that was when I was told I had osteoarthritis all through my body. So, I think that is what caused the flareup of pain on Saturday. This scan is likely to check for matastases as well as just being a six month scan, because of the rise in tumor markers in April. it is hard to believe I could go from Stage 1 cancer to Stage 4 in less than a year, but I guess anything is possible. Just one step, one day at a time.
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53Nancy— prior to my BC dx, I was taking Relief Factor for arthritis pain and had really good luck with it. Pain was all but gone. Relief Factor has Turmeric as one of the main ingredients but unfortunately as an ER/PR positive BC patient, I have been advised to stop taking Turmeric as it acts like estrogen to my body. So sad. But I see that you are not hormone positive so wanted to mention this option to you.
And best of luck on results on the bone scan. Wish my MO did scans and not just relying on blood test results.
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Dazzling...I am so sorry that you are going through all this. Sending hugs.
53Nancy. I get lots of aches and pains. It is crazy how many. I had a bone scan in March it was all clear except for new arthritis in my shoulders and my Achellis tendinitis showed up. When I was first diagnosed I had a CT scan and was supposed to get a bone scan at the same time. Didn’t get the bone scan till months later. The nurse told me that if the CT is good the bone scan should be too.
I have my exchange surgery on the 7th and can’t take anything for the joint pain. A few more days. I plan on asking my MO and orthopedic what can we do to fix it. Took 2days of the new AI and stopped till after surgery. Oh well. I am thinking of all of you.0 -
Annbee—. I have been reading about acupuncture helping joint pain from AIs. Need to find out how expensive that process is as my insurance doesn’t cover acupuncture. Wanted to mention that in case you get to the point of needing something for joint pain.
Also best wishes for the 7th. Please let us know how it goes when you can after surgery
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Ambee, not sure what exchange surgery is but I hope it goes well for you on the 7th. Please let us know. For joint pain, YL Su;lfurzyme has made a huge difference for me. Before I started taking it (March 2017) there were days I was in so much pain I couldn't even get out of bed. Most days now, I have no pain, and am just taking two capsules a day. The recommended minimum dose is four, but I have done well on just the two. I pay out of pocket, of course, but right now, if I was on pain medication, I would be paying that out of pocket as well, until we reach our deductible, which will probably be November. One bottle of Sulfurzyme (300 capsules) at two capsules a day will last 5ive months and costs be $90.00 Canadian. I have tried Glucosamine Chondritiin with MSM but it bothers my stomach. Hope you get some relief for your pain. I am a little achy tonight, but I was ut mowing grass for a while. Thank you so much for sharing that the nurse told you if the CT scan is good, then the Bone Scan should be too. All the best of luck in every way.
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so I have been following you all for awhile. I had my first check up with my breast surgeon. I still have pain but she pretty much dismissed my pain at my last check up at 2 weeks post op. So she asked how I was feeling I replied tired. I think it is the femara. Yes I have bone pain and arthritus. Ok let me examine you. I asked if she thought my lumps were adhesions. She continued to press around on the cancer side as I say ouch that is sore. She asked if the oncologist said anything about chemo. I told her she said I was fine with ai. I was 1 point below. So what can I do about this pain? Gamapentin? I don't want to take stuff. She said I need to do an ultrasound on this lump with biopsy.. I am like whoa..hang on. You feel a lump where? On the chest wall.
So I am trying to be logical and wonder if it could be a truncal lymphedema? I have had a lot of nerve sensitivity since my bmx. Pain maybe where drains were but felt like nerve pain not live pain. I have been feeling live pain around that area for a couple of weeks.
Any thoughts? I got my md through the mail lol! I am waiting to get authorization and am wondering if I am awake for this. Thanks for keeping me sane sisters!
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lisap62– so sorry you have to go thru this.
As you may have read, back in March I had 2 lumps biopsied. They were/are along the incision scar. Both came back B9 (partly fat necrosis). Clips were put in the biopsy spots. Both areas are still sore to touch. MO told me to massage them to help break them up. I am not very good at doing that cause they are tender but am trying to massage them daily now.
Hope your path turns out to be B9, too.
By the way—- glad you posted. Together we get thru this crap one day at a time.
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Hello everyone. Hope you are having a good day. Just wanted to share with you that I had my bone scan yesterday and the results are already in, and it is CLEAR! I feel like celebrating!
Six month follow up on June 18, but now I don't have to face it expecting bad news.Will be back later to catch up.
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Yea, Nancy! Congratulations on your scan. Hope you're celebrating!!
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53Nancy—. Woot woot!! May you have clear test results for years to come.
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yeah that is awesome news Nancy.
Exchange tomorrow , get my expanders out and permanent implants places. I know I shouldn’t be nervous,but I am.
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Annbee—. Sending you best wishes for your surgery tomorrow.
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great news Nancy🎈🎈🎈
Amber sending love and heal to You for tomorrow and may God guide your surgeons hands 🙏🙏
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Nancy-great news!!!
Anneb -Good Luck tomorrow! You are going to feel so much better!
Dodgers Girl - my PS told me to get the paper medical tape and tape my scarlines. (I lost both nipples in my BMX so I have two lovely straight lines). He said that the tape will essentially massage the tissue whenever I move. I had my exchange at the end of March and will be taping through June. I did learn not to keep it on if I am going to be outside working and getting sweaty. It irritates the taped area. I take it off when I get a shower and retape after I dry off. It does seem to be helping soften the scar tissue. Maybe ask your PS about doing that if you are tender and can’t tolerate massage
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TARenee—. Oh my, thank you for the paper tape tip Will definitely try that. Thanks!!
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Great news about the bone scan.
Very exciting, exchange surgery. I will be thinking about you.
I had my herceptin/perjeta yesterday. Instead of dreading it, I was happy to be there. I'm coming out of my funk. It helps to keep busy. Sleeping is getting better. I get the final path report next week and starting some radiation on the clavicle site. Will keep you posted.
On an unrelated note, the right breast that had the lumpectomy done on it, which it had gotten a lot larger even before the lumpectomy and was just not right. Finally, finally the size is starting to come down. My bra is not making indentations anymore and the nipple is acting more normal too. The pitting skin is going away very very slowly too.
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Dazzlingeagle— so glad to read things are slowly improving!
You are so right that keeping busy and sleeping are good for the soul.
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Hi all, I have not been on here for awhile but was reading to catch up. I have switched PS and have decided to have DIEP on my radiated breast. I have the surgery next month an am getting nervous but I think this is my best option. On the non-cancer breast, he is going to remove the TE and place an implant over the muscle. I am so scared of the surgery I think he suggested this as an alternative becuase the surgery and recovery will be shorter. I am happy with the decision but so sick of thinking about breast cancer but here I am almost a year after my BMX and still have months to go before I can turn the page. Glad to see many of you are moving on.
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Oh Amy, I hear you! Even tho I am "doing fine," my follow-up MRI today was so darn stressful, and yet another reminder that this is never really over in some ways. I will be thinking good thoughts for you, and hoping that you get great DIEP results like my friend had in New Orleans. Wishing you peace.
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Hello everyone. Ambee, I have been thinking of you today and hope everything went well. DazzlingEagle, my right breast, on which I had the lumpectomy, had also gotten quite large and somehow it was a sign of cancer I never thought of, because it had always been a little larger anyway. Now it is almost the same size as my left breast. I still have pain but not near as bad. I also am sleeping better. Regarding the bone scan,I would think the statement about metastasis MIGHT be present is a given in every report; that way, no one can say they weren't made aware of the possibility, no matter how distant. I have had a great day. Bought more flowers and planted them today. A year ago I couldn't do that. My bones are aching tonight but it's because I've been going at things steadily instead of in bits and pieces. I feel so good. I appreciate so much the support you have all given me
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stopped by to see if Amber checked in. Still sending good vibes out to all that need it. Glad to hear improvement in small steps for many. Sometimes even the smallest triumph can change our attitudes. Wishing you all a wonderful evening.
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OCDAMY—- please keep us posted on your upcoming surgery. Glad you found a solution that makes sense to you... that is what matters most.
Pretty soon all of this will be a view in the rear view mirror. We are kicking cancer’s butt and reclaiming our lives!
Georgia1– hope you don’t have to wait too long for your MRI results and hoping the news is good news
53NANCY— isn’t it wonderful to be able to be outdoors again! What kind of flowers did you plant? My gardens are starting to take off with flowers and veggies growing nicely
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I am checking in. Surgery went well. My left breast side has pain but only taking Tylenol as of last night and my right side has zero pain, nothing. I see the doctor this afternoon. This surgery was so much easier than the first one. I am grateful. Thank you for all your well wishes0
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Hi all.
I passed my 1st cancerversary on Wednesday and completed active treatment in November.
Today was my first post-treatment mammogram.They called me back in for additional images on the right (non-cancer) side, and I nearly passed out! But it turned out to be nothing - I got the all-clear! Still NED!
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Congrats nightcrawler! That must have been like going from 0 to 100, huh? Extra images ...yikes!!
But all is good!!
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nightcrawler— congrats on remaining NED! Super happy for you.
Annbee- glad surgery is now behind you. Wishing you a fast recovery and a great summer vacation!!
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Okay, this is kind of a silly question but has anybody noticed that during chemo mosquitoes didn't come near you. Now that I'm back to normal they are attacking me like crazy. Just wondering if they're smart enough to realize they don't like blood that has chemo drugs in it.
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