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Post by shevy on Aug 14, 2014 2:37:55 GMT
I'm in the midst of a major anxiety episode, so if I'm not making sense, let me know and I'll clarify.
I'm 14 months post-op and have to have my first mammogram. In order for my insurance to cover birth control and the practice my doctor is part of, I have to have yearly mammograms.
Its tomorrow morning. It will be the first time anyone who's not my plastic surgeon or my husband will see my breasts and I'm still working through revisions/complications.
I had had to verbally spar with the scheduler at the breast center I go to that 1. I didn't miss my 6 month follow up from my 2013 biopsy because I had a mastectomy. 2. Yes, I still need mammograms because not all the breast tissue can be removed. 3. I don't have implants, but my own tissue harvested to create breasts. Argued for 15 minutes, resulting in me asking for a supervisor after I had burst into tears.
Is it bad? The mammo it's self? Does it depend on the feeling you have left? Is there other testing for the chest wall because that's my big concern because of my mom and grandmas cancer sites.
If you have a spare prayer, I could use it. My anxiety is so bad I've taken 2 days off work this week because I can't concentrate.
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,827 
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Post by scrapngranny on Aug 14, 2014 2:42:49 GMT
I can't answer your question, but I want to send you (((hugs))). You certainly have my prayers for peace and calming thoughts. Let us know how it goes.
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Post by colleen on Aug 14, 2014 2:44:48 GMT
You are in my thoughts and prayers. I had a Diep flap mastectomy and I don't have to have mammograms. I think I would insist on an MRI (for me personally) if they did think I had breast tissue left. There are other tests besides mammograms: MRIs, thermograms, and breast ultrasounds are the ones that I can think of.
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mimima
Drama Llama
Stay Gold, Ponyboy
Posts: 5,076
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Post by mimima on Aug 14, 2014 2:44:46 GMT
Prayers indeed
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Post by shevy on Aug 14, 2014 2:48:35 GMT
You are in my thoughts and prayers. I had a Diep flap mastectomy and I don't have to have mammograms. I think I would insist on an MRI (for me personally) if they did think I had breast tissue left. There are other tests besides mammograms: MRIs, thermograms, and breast ultrasounds are the ones that I can think of. Colleen, I hadn't considered asking for another form of testing. Thank you! |
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scrappinghappy
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“I’m late, I’m late for a very important date. No time to say “Hello.” Goodbye. I’m late...."
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Post by scrappinghappy on Aug 14, 2014 2:49:25 GMT
I agree with Colleen. BFF had a mastectomy 3 years ago, nipple revision last December and has Ultrasound and MMR instead of mammograms. They cost more but are more effective measures of detecting cancer than mammograms and she has her Dr's support in requesting those tests. Insurance has always paid. Let me know if you want me to ask her for more info. I'll be seeing her from breakfast tomorrow morning.
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Post by elaine on Aug 14, 2014 2:56:09 GMT
No answers, but lots of (((hugs)))).
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caro
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Post by caro on Aug 14, 2014 11:54:55 GMT
No answers, but lots of (((hugs)))). [br Yes^^^ |
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Deleted
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Oct 9, 2024 10:21:12 GMT
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Post by Deleted on Aug 14, 2014 12:00:59 GMT
Prayers, hugs, duah and anything else you need to get through this. You have all of us behind you. There are lots of us too!  |
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Post by shevy on Aug 14, 2014 14:22:45 GMT
I didn't go. Man this is so hard. I'm mad at myself for being so anxious. I'm mad that I can't seem to just get out and go. I feel like such an incompetent idiot.
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Post by Basket1lady on Aug 14, 2014 14:28:28 GMT
Can you call the nurse at the office where your surgery was done? They may be able to advise you of the normal protocol. You are by far the first person who had had to deal with this. I don't blame you for canceling, but get the answers you need. The anxiety is in the unknown. You will feel so much better when you have the answers.
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brandy327
Drama Llama
Posts: 6,353
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Post by brandy327 on Aug 14, 2014 15:16:03 GMT
I'm sorry you're having such a hard time and didn't go. Good thoughts and prayers that you can reschedule the appt and get there.
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Post by annabella on Aug 14, 2014 15:17:33 GMT
I'm sorry you're dealing with this.
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TXMary
Pearl Clutcher
And so many nights I just dream of the ocean. God, I wish I was sailin' again.
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Post by TXMary on Aug 14, 2014 15:47:05 GMT
It IS hard. I totally understand that. I had a TRAM flap three years ago. I don't have mammograms anymore. They can't ever guarantee they got all the breast tissue of course, but according to my PS mammograms are useless on a flap patient. Even if there was breast tissue left, it would be too deep and not seen on a mammogram. As my PS told me, for the most part you don't have any breast tissue and you can't get breast cancer in abdominal tissue. Honestly, the thought of having my flaps squeezed freaks me out. I can't imagine that wouldn't be painful. I don't have much feeling but still... I don't think I could do it and I'm very glad I'm not required too. You are most definitely not an idiot. You are in a unique situation and sounds like you are dealing with people who have no idea what you are talking about. If they insist on it, and I still think it's ridiculous to require it of you, I would ask for an MRI. I think I would call my PS's office and talk to them. They understand at least.
I hope you are able to calm yourself down. I certainly understand post breast cancer/reconstruction anxiety. I still deal with it way too often. Do you have medication for it?
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Post by shevy on Aug 14, 2014 16:00:47 GMT
TXMary I finally admitted in June that I needed meds for anxiety. They work most of the time, but not all. Yesterday was really bad. I'm getting much better at telling DH that my anxiety is high and kind of hiding out in my bedroom with random TV shows, my dog to pet and crochet. I think I need to go back in for rescue meds in addition to the daily med. When I go back into my doc, I'm going to tell her about the mammogram and ask her to put a note in my chart. The thought of the machine squeezing my well protected flaps and doing damage terrifies me and makes me physically ill.
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TXMary
Pearl Clutcher
And so many nights I just dream of the ocean. God, I wish I was sailin' again.
Posts: 2,961
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Post by TXMary on Aug 14, 2014 16:40:37 GMT
TXMary I finally admitted in June that I needed meds for anxiety. They work most of the time, but not all. Yesterday was really bad. I'm getting much better at telling DH that my anxiety is high and kind of hiding out in my bedroom with random TV shows, my dog to pet and crochet. I think I need to go back in for rescue meds in addition to the daily med. When I go back into my doc, I'm going to tell her about the mammogram and ask her to put a note in my chart. The thought of the machine squeezing my well protected flaps and doing damage terrifies me and makes me physically ill. I do understand. The anxiety is probably the hardest, most lingering and difficult to deal with side effect I have. It comes out of nowhere and I have meds too, but as of yet, don't have a better answer for it. I have resigned myself to the fact that it might be a forever thing. Just another aspect of the whole cancer crap. And one that not everybody understands. I have been thinking about the mammogram and there is just no way I would let them squeeze my flaps. We went through so much to get these babies. That is one intense surgery and recovery. My original surgery was 10-1/2 hours long. I had two other surgeries- one for revision and one for nipples. Several tattooing sessions. I just wouldn't let someone who didn't understand what you have been through come along and squeeze the crap out of them. I just couldn't do it. Totally on your side there!! This surgery is such a complex microsurgery...nope, wouldn't let them near them. Honestly, the thought makes me ill as well. And 14 months...you are still healing inside. I think I said three years for me. Actually, it's just over two years- February 14, 2012 (yes, Valentine's Day...lol ) and I wouldn't do it. And I'm sorry they are creating this unnecessary anxiety for you. |
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Post by katiekaty on Aug 14, 2014 21:01:45 GMT
Thank you for sharing your experiences and feelings here. I haven't had any of theses issues, but I appreciate your openness with the rest of us. Thanks and wishing you well and peace with your care and decisions.
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scrappert
Prolific Pea
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Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Aug 14, 2014 21:08:37 GMT
I do not have any answers for you either, but I wanted to give you HUGS and prayers.
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melissa
Pearl Clutcher
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Post by melissa on Aug 15, 2014 4:09:32 GMT
If you had a bilateral mastetcomy, no matter what the method of reconstruction, you do not get mammograms. It's a waste of time and money. It's irrelevant for birth control of any sort if you do not have breasts made from breast tissue.
Going forward, if it were me, I would plain out refuse and ask for the data on mammograms for women who have had mastectomy. MRI is one thing (and also NOT routine) but a mammogram is, well, inappropriate unless perhaps someone had a breast transplant and I have never heard of that one! it is designed for breast tissue and breast tissue only. The scheduler was actually correct once s/he learned you had a mastectomy. Now, if you only had a single mastectomy and not both breasts, only the remaining breast needs a mammo.
People like to check off boxes. A year after mine, both my insurance company and a nurse at my internist's office were insisting I go for one because, after all, I was now over 40 and should be going annually. I did eventually get off that list and they stopped insisting. Occasionally, a medical assistant will hand me a mammo slip at my annual physical because it is their habit.
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Post by shevy on Aug 15, 2014 15:54:47 GMT
Thank you Melissa. I feel like it's adding insult to injury to have to play go between for my insurance and the clinic where my doctor to try to get them both on the same page. I'm scheduled to see my primary care doc next week and hopefully I can get my chart updated to reflect this.
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angie w
Full Member
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Jun 26, 2014 2:35:35 GMT
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Post by angie w on Aug 15, 2014 16:21:20 GMT
I don't think you're any kind of idiot! I totally agree with refusing a mammogram. I have had two mastectomies and had the DIEP flap reconstruction on both sides and I do not get mammograms.
I hope you can get the drs office to call off the insurance company. You sure don't need this aggravation after all you have been through. Hugs.
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Post by anonrefugee on Aug 15, 2014 16:28:31 GMT
I'm sorry. I can only offer hugs not advice. I hope you get gentle techs and kind admin employees as you deal with this.
I'm surprised and saddened to hear they can be so insensitive.
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