Member of the "6 Month Watchful Waiting Club", Unite!
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alicki - nice to hear from you! On 2.29, I had my 6 month follow up (bilateral diagnostic mammogram w/magnification - for bilateral faint calcifications - and US on one breast for a cyst they are following). No changes - back in 6 months for 18 month follow up. Already made appt for September 12. Started taking Evista a month ago - so far tolerating it just fine. Diagnosed with osteoporosis in January - Evista should help with that. I was more anxious the week before my 2.29 appt. than I was for the last appt. Took Xanax when I felt I needed it, including morning of appt in the waiting room. This time I did not have any post appt crashing, fatigue, not being able to get out of bed.....After my appt, I went out to lunch, to my gym/pool and I was just fine. When I was making my appt for my next 6 month follow up, the receptionist told me she could not do what I am doing - 6 months/2 years protocol.
My follow up schedule is a little confusing. I have bilateral issues - one breast was biopsied - benign fibrocystic changes/no abnormal cells but they are still following that breast every 6 months for 2 years. Calcifications in the other breast are same as the ones they biopsied - birads 3 - being monitored for stability. Because of anxiety one radiologist offered to biopsy the other breast and said if I did the biopsy, then I could go back to annual. Yet I'm still being monitored every 6 months for 2 years on the breast that has already been biopsied. This is their protocol - they monitor all calcifications for 2 years. I've explained my situation and follow up protocol to Ask An Expert/Johns Hopkins Online Breast Cancer site. They said that without seeing my images it's hard for them to know what's going on, but that it is common to go back to annual screening after 2- 6 month follow ups with no changes. I've had 2 6 month follow ups with no changes, and Hopkins was not sure why I'm in a 2 year loop rather than back to annual - guess follow up is different at different institutions.
Ddw79 - Maybe ask them about why no US? I had calcifications that were starting to form a line and they were picked up on mammogram. I think US are used for women who have dense breasts and for them a mammogram might be hard to read. My density is not too bad. But my mammogram picked up a cyst and they do US to monitor the cyst. A technician does the US, sends the report to the radiologist and at my facility, the radiologist then comes in and does the ultrasound her/himself. An oncologist told me that 3D is almost as good as an MRI but so far they have not ordered 3 D on me.
momoschki - you are in a tough situation with the 6 month v. annual. I think I might stay with 6 months too. 5 years of this - thanks for staying on this message board with us.
trish01254 - best wishes for good results on the 16th - let us know
Tinkerbell49 - sounds like you will have a long day on Tuesday. I remember spending about 3 1/2 hours in radiology for one of my initial appts. Maybe they are doing baselines for you since this is your 1st 6 month follow up.
In your pocket to every one with upcoming follow ups. Let us know how you are doing.
Frankie
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trish01254 - An oncologist told me that 3D Mammograms are almost as good as MRI. At my recent follow up I asked the technician if I was getting a 3D mammogram and she said no my density isn't too bad. They haven't ordered one yet - maybe next time.
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Hello,
I love this community of strong women. Thanks for all the wonderful info and stories of personal expérience. I just found out that i have Gilberts syndrome and pre diabetes. So the breast issues Have been in the background lately
BUT need to get breasts checked too so really appreciate all the info. 3D mammograms are standard where i live so we get them everytime. I dont trust mammograms Thats my problem, but we always get ultrasojnds with them aa part of standard practice so Thats a little comforting.
Momo: i went the same way as you due to Sévère inflammation processes.. And i son longer suffer from problems Like that.
Ont thing you may think of is getting regular drainage lymphatic of the breasts. It takes the toxines away and the breasts feel light. I ve been doing it since last June.
And stay away from Those wire bras, They impede lymph circulation and toxines build up - just a thought!
Best
Alicki
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Alicki sorry to here you are dealing with all this but at least nothing serious at this time. Thank God...
Trish01254 I have had diagnostic magnification mammogram s I don't know if that's the same as 3 D. I guess I can ask tomorrow as my big day is tomorrow. Mammo and US in the morning mri in the afternoon. Hopefully no biopsies in between. My anxiety is over the top. Keeping my fingers crossed.
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Tinkerbell49 - I was just thinking about you and I was signing on to tell you good luck tomorrow when your post came through. I understand over the top anxiety and I know exactly how you are feeling. You are in good company here. I wish you good results and quick comfort. I think there is a difference between diagnostic magnification and 3 D. Let us know how things go tomorrow.
Alicki - sorry about the new diagnoses but glad it is nothing serious. Glad you are back with us.
I too get regular lymphatic breast drainage
Frankie
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Thank you Frankie it's nice to know you had me in your thoughts. All prayers help. All my courage walked out the door but I will be taking a xanax because I think I'll fall apart without it. Wow!!!!
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Tinkerbell49 - I had to take xanax the night before my last appt and also in the waiting room before they called me back. Somebody once wrote on one of the threads that you don't have to feel brave or courageous about these appts - you just have to get yourself there any way you can.
Frankie
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good picture wishes for you tomorrow tinker bell!!!
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I'm routing for the all clear for you too Tinkerbell. In October when I had first follow up I also took Xanax and a friend who has been through this. Both helped
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Thanks everyone... I hope I'll have good news to report.....
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hey,
Good Luck for tomorrow!!
Best,
Alick
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I'm sitting here with my pink gown on waiting. I took my xanax but I'm still a little nervous not as much though. I guess I will keep praying.....
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Tinlerbell49 - I was just thinking about you. I know that feeling of sitting in a gown praying my Xanax works enough to get me through. This feeling will not last forever. I'm glad you checked in with us. I will be around much of today so feel free to check in as you go through your testing today and let us know how you are doing.
Frankie
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Hi Frankie thanks. Just had mammogram nothing was seen waiting on US. 1 down 2 to go.
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Tinkerbell49, are you okay sweetie?
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just checking in, nothing showed on the mammogram, so I went on to us and of course there is something in the right breast now. So radiologist is waiting for mri to give me his report. Nurse said he wasn't concerned but he would see mri. So I'm guessing if mri lights up it's back to biopsy. I hope it's not bc but I'm definitely going towards pmx. Still hoping it's nothing bad.
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Thinking of you and holding your hand.
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Tinkerbell - thanks for checking in with us. Hang in. I think it could be a good sign that the nurse said he isn't concerned because I don't think they say that unless they mean it. I think if there is a concern they don't say anything until all tests have been done. We are all connected.
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OK ladies after waiting all day with my heart in my throat. I got the all clear. A couple of cysts on the right, but all b9. Mammogram, ultrasound and mri. Now my radiologist wants to see me once a year he said in my case he's not worried. I don't think I agree he said with adh he doesn't do every 6 months. I think im going to get a second opinion on that. I have all my disks and will pick up reports in a week. Even benign conditions get 2 years surveillance.
Definitely celebrating Tonie though. Thank you for all your concerns and support it sure helped me through out the day and the waiting. Mominator I hope I didn't squeeze your hand to hard.😊 Thank you Frankie for your support.
I can breath again...0 -
Ddw79 when you went for your six month follow up did they give you a 6 month follow up again?My radiologist said ultrasound and mammogram in 12month and mri in 18 month. I'm just a little confused. I have an appt with surgeon and onc on the 24th I guess they can tell me more. Just wondering since you got a birads1.
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so happy for you Tinkerbell.👏 YES! All day thinking positive thoughts for you.
I think recommendations are changing for ADH. I am confused too about surveillance. You just try to enjoy a few days off this girl
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For sure GF thank you!!!! So happy for this group and all you ladies.
I just looked at my mammogram images from today and 6 month ago, what a difference one or two calcification. Last year I had clusters and scattered. Waiting on report, but definitely looks normal this time around. I think caffeine has a lot to do with it. I cut caffeine all the way.
But today I'm celebrating with a little wine😉 trying to shake this whole day off I couldn't stop shaking. I finally found something that scares me to death, and I don't scare easy.
I wish we all lived close by what a party we'd be having. 🍷Here's to a long happy life to all of us.
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Hi Tinkerbell - I was delighted to hear the good news yesterday! I know the feeling of "I can breathe again." I hope you are starting to unwind a bit.
I know what you mean about confusion with follow ups. I am being followed every 6 months for 2 years for birads 3 bilateral calcifications. Even though they biopsied one breast which was completely benign - no abnormal cells - they are monitoring that breast every 6 months for 2 years - which keeps me on pins and needles - especially when they keep watching one breast for 2 years - after a completely benign biopsy. The calcifications in the other breast are the same as the ones they biopsied.
Have you ever looked at Johns Hopkins Ask An Expert Online Breast Cancer Website? You can ask them a question and they answer quickly. They have a separate category for ADH. The first link below is for the ADH category. The second link is for the main site - it lists all the different related breast cancer categories. I've asked them numerous questions.
http://www.hopkinsbreastcenter.org/services/ask_ex...
http://www.hopkinsbreastcenter.org/services/ask_ex...
Smiling big for you today!
Frankie
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so Happy for you tibkerbel!
Whose left a side me for the march watch?
Yeahhhhhhh tinkerbel!
Alick
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Hi Frankie
Yes I have been on that site several times. I will ask about follow up procedure. I read my report today and I have a birads 2 which is my usual except the last time which of course was a 4. With birds 1 & 2 my radiologists said once a year mammogram and us and Every 18 months mri. I had 2 micro foci of adh on core needle only nothing on lumpectomy, he told me less than 0.1 mm like 16th of a mm. He described it as a pin head. At least it feels good the can see something so small. He said he is not worried about me that I'll be fine. So I told him Dr with all the new studies they are saying that at some point 5,10 years later adh will be low grade cancer or dcis. He told me that the majority of women never have anything more. So I'm still thinking of taking tomaxifen since my drs don't think my benefit out weigh my risks it's all my decision. I will see my onc the 24 and I'm going to ask if there is a test I can do to see where I am with menopause since I'll be 50 next month. I will probably take tomaxifen til full blown menopause then switch to Evista. Hopefully I can switch quick.
Alicki Thanks I think I over celebrated but it felt so good when he said you are all clear. Woooo!!! I was on pins and needles all day. When is your follow up? My father was told he was pre diabetic 20 years ago other than eating healthy and switching to sugar free stuff he is fine. Blood work has been normal since then. Good luck on your follow up..
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I'm so happy for you, Tinkerbell. You didn't squeeze too hard, just right.
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my appt went great. Had 3d mammogram without having to ask for it. No changes from last so went on my way to bs. He checked everything ok. I do have hernia so will need us of abs.
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Congratulations - happy for you! Thanks for letting us know.
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Good idea Frankie . I'm going to go back to the Hopkins site and ask about ADH follow up. Getting more and more confused with everybody saying so much different.
I have type 1 Diabeted since age 60. That and BC will kill me for sure. My life's a serious piece o work.
Happy I found you ladies and so happy for Tinkerbell👏👍🏻
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Yeah Trish!!! What a great week
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