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mammograms after a bilateral mastectomy, anyone?

Harley63
Posts: 8
Joined: May 2011

I have been doing some research and would like to know if anyone else is having mammograms or breast MRIs after having had bilateral mastectomy, with implant reconstruction. I have saline implants and my surgeon wants me to get mammograms, but I refuse.
I am a four year breast cancer survivor and have had 2 breast MRIs after my reconstruction. My surgeon decided to only get them every OTHER year. Well, I can't believe it, but it's time again for the every other year breast MRI. BUT, the same thing is happening again, just like last time... my insurance does NOT want to pay for it. I keep telling them that IF I get a Mammogram, I will have a BLOWOUT, and then they will have to pay for my reconstruction AGAIN.

What do you girls think? What did your surgeon tell you??

Thanks. I was crying on Friday, trying to reach my surgeon's office and the insurance company, trying to explain to them that I really AM HIGH RISK, since I have had INVASIVE DUCTAL CARCINOMA.... Breast cancer for crying out loud!

The insurance rep told me that there was NO information on the request for the pre authorization from my doctor... nothing like.... breast cancer history.... I seriously doubt that.... the office ALWAYS puts that stuff on ALL my paperwork and on ALL the requests.

Now my insurance company is insisting that I give them my specific % risk for recurrence. NO ONE ever gave me this information and my surgeon and my oncologist BOTH,,, well NEITHER one knows this number....

What to do??

Please help... I'm new here....

Thanks
Harley

MAJW
Posts: 2515
Joined: May 2009

Women with implants have yearly mammograms all the time...I was always curious as to how that is , i asked the tech where I have my mammos, several years ago how it's done...she explained it takes longer, with more images also.. And they've never had a " blow out!" which I asked about... I have a friend who has implants, is a bc survivor of 5 years and she has yearly mammos...with no problems...perhaps you should call where ever you have had them in the past and question how it's done...

And are you talking about a full body MRI or a BREAST MRI? I would think a breast MRI would be covered considering your history..but I also know they won't cover it routinely, your physician has to have a valid reason for ordering it...such as some type of symptoms...

Also, my oncologist, surgeon and radiation oncologist all gave me the statistics for recurrence...I, too had invasive ductal and I am triple negative....

Best of luck ...keep us posted...

Harley63
Posts: 8
Joined: May 2011

thanks for your reply.

Nope... I NEVER got any statistics, percentages... %risk of recurrence.... nothing NADA

yes, I thought I said breast MRI

anyway, the only people I know who get mammograms AND have implants are my neighbors and they NEVER had cancer! They just wanted to enhance themselves... ugh... I would NEVER do anything like that, and I would NEVER have gotten reconstruction, if I knew it was going to be such a pain to get NECESSARY SCREENING TESTS....

Harley

Harley63
Posts: 8
Joined: May 2011

oh and BTW, my surgeon has told me about one of his patients who had a BLOWOUT, after a mammogram.... so it CAN happen... I also received another breast cancer booklet from an implant manufacturer, and it states very clearly:

With breast implants, routine screening mammography for breast cancer will be more difficult. The implant may interfere with finding breast cancer during mammography and because the breast and implant are SQUEEZED during mammography, an implant my rupture during the procedure....

also, my neighbors have their OWN breast tissue, in addition to the implants... that would maybe make mammograms easier for THEM... not someone like ME, who had the breasts REMOVED...

MAJW
Posts: 2515
Joined: May 2009

Okay

wndringmnd's picture
wndringmnd
Posts: 44
Joined: Apr 2011

Dear Harley,
Hi, I thouht I would let yo know my history. It might help you with your decision, or make it worse. I got my first set of silicone implants in 1990 and got regular mammograms, which I am convinced ruptured one of my implants. After a year of pain I finally got a breast MRI which showed the rupture. I scheduled a replacement surgery in 1998. and continued having mammograms. After irregular mammograms This last one showed a mass that led to an ultrasound, and a MRI which showed also both replacement implants ruptured, in other words...cancer and replacement of implants,again. I have finished chemo had surgery to remove the cancer, lymph nodes and implants and am doing radiation at this point. I am implant free at this point. My surgeon needs to wait nearly a year, until I am fully healed to put the new iplants in, and yes, I will get new silicone iplants in, but will double think the mammograms and argue to have MRI's instead.
Hope this helps
Hugs
Marilyn

Harley63
Posts: 8
Joined: May 2011

Marilyn
Thanks for your message.
I am so sorry you had to go through that. I got saline implants and not silicone for that very reason. With saline, if you get a rupture, you just go flat. Also, I would never get a mammogram with silicone implants; only get breast MRIs.... the Breast MRIs are the only way to check for leaks or rupture.

oh, I am unclear as to whether you had the first implants after being diagnosed with breast cancer.... was that just the usual breast enhancement that some women get? In that case, I am sure they would still have recommended you for mammograms, but, I would be afraid to get them.

So sorry... Please don't get mammograms after your reconstruction with silicone implants...
Hope your treatment has gone well.

Shheesh... isn't it bad enough that we had to go through all this crap, and now to have to know what is the right thing to do?

Thanks for sharing your experience.
Harley

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Harley,
I am a mammo tech and I have done patients with implants for 5 years with out rupturing any. Yes it does happen but very infrequently.

The implant is NOT compressed.

First there is an image with the implant over the film and only enough pressure to rest on the breast. Then the breast tissue is secured and the implant pushed back and only the breast tissue is compressed. It is really hard to explain with out having the person there. The problem with implants and seeing cancer on a mammogram is that not all of the tissue can be imaged. The implant masks it on the film and we can not pull all of the tissue on to the machine with out the implant.

I wish I could explain better but about 10 to 25 % of the breast tissue is not imaged depending on the patient, the implant and the tech.

MRI's do visualize the breast better especially with implants and/or very dense breasts. I don't believe you have the risk of rupture with MRI.

Most insurances will cover if you have high risk and/or dense breasts. I am not sure what the standard is for mastectomy. If you had the skin saving surgery you still have breast tissue so I would think that should be covered. If you had a complete mastectomy not all oncologist suggest breast imaging.
Most insurance companies just need things worded correctly on the paper work.
It is too bad insurance companies think they know better than doctors......
Good luck,
Cindy

PS - some implant become encapsulated (your body builds up tissue around the implant) and very hard. This is what sometimes leads to rupture. Be sure to follow post surgery care for them to reduce the risk. I think the silicone is about the same as saline for safety now. They have improved either the implant or the procedure.

One thing I tell all my patients asking about implants is don't bargain shop. These are a part of your body and you will have them forever! You get what you pay for.

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

. . . for the information on how a mammogram is done on a patient with breast implants. I had a tissue expander put in at the time of my mastectomy (right side only) and will be having my expander removed and the implant put in on June 13th. I was wondering how the mammogram would be done.

IRENE

TraciInLA's picture
TraciInLA
Posts: 1829
Joined: Jul 2009

mamolady, while I am in no way glad that you have a reason to be here with us on this board, I just want to say how helpful and valuable it is to have you here to share your professional expertise with us.

Traci

tommaseena's picture
tommaseena
Posts: 1771
Joined: Feb 2009

I was told by my surgeon and plastic surgeon after my double mastectomy w/tissue expanders and now w/silicone implants that I would only have breast MRI's every 2 yrs from the replacement date and never a mammogram.

That is what I have been told and I'm going with that and sticking to that and I have it in writing from the plastic surgeon.

Margo

Harley63
Posts: 8
Joined: May 2011

Thanks, Margo. That is exactly what I have been doing ... breast MRI, every year at first, and now every 2 years.
BUT now the insurance won't pay for it.
BUT... I don't have silicone implants. You can't have mammograms, and only MRIs will show if your implants rupture.

FYI

Harley

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I had a lumpectomy, so, I don't know about this. But, I have always wondered too how they would do a mammogram with implants. Thanks for sharing this with us.

Leeza

Harley63
Posts: 8
Joined: May 2011

mamolady,

Thanks for the info. It is still unclear to me about how you push back the implant... and only the breast tissue is compressed.... but I don't have very much breast tissue at all... so, I doubt it would even be enough for the mammogram.
Also, been doing some research, and the radiology dept. at the hospital where I get my breast MRIs told me that they would NOT recommend a Mammo., in fact, they do NOT do them. They recommend women with bilateral mast., and implants to get breast MRIs...
but when I asked them to put it in writing for me, they refused....

So now I have NO proof for my appeal to my insurance company.

mamolady, I am SO upset! The letter states that having had breast cancer does NOT put me at higher risk for getting breast cancer AGAIN.... WTH??

I need a TECHNICIAN, or RADIOLOGIST, to write a letter to explain this to those blockheads.

Oh, and thanks for the info. about post operative care, but I am 4 years out now....

Harley

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Harley,
Your oncologist or plastic surgeon may be the best person to write the letter to the insurance company. Check with both doctors for help. I know the radiology department doesn't usually order exams so they may not have much to do with the insurance companies. The ordering physician would have to justify the exam?

Is any one well versed in insurance stuff?

I am really sorry it is so difficult to get appropriate care.

Cindy

Harley63
Posts: 8
Joined: May 2011

well, my oncologist AND my plastic surgeon, as well as my breast surgeon ALL refuse to write a letter for my insurance company.

I would think that the radiology dept. could better explain WHY a mammogram really wouldn't be able to detect cancer... since it will only see the implants.

Someone else posted here that lots of women with implants get mammograms, but remember.... MOST of these women STILL have breasts and didn't have breast cancer. I had to explain this to my plastic surgeon's assistant.... and yep, I bet she's BLONDE, too....

Thanks for all the advice... I guess I am just out of luck, since NO ONE in the medical field seems to want to help me...

Whenever I need help, I always seem to be on my own...

Harley

RozHopkins
Posts: 444
Joined: Dec 2010

No - I was told no mamos after bilateral surgery. I understand I will be only given MRIs from now on. Happy with that. My cancer was Infiltrating Lobular both sides. I was told they wont do any more mamos because of a fear of rupture plus my cancer was totally missed by mammos in the first place. Guess what your medical teams believe in.

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

I'm with Roz and Margo, I too was told no more mamos after my bilateral.

Lorrie

Mitzi333's picture
Mitzi333
Posts: 511
Joined: Feb 2011

I was told no more mamos after bilaterial. MRI's going forward.

Mitzi ;0)

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Would you get MRI's with a bilateral? I get them even though I had a lumpectomy.

wdwnwf
Posts: 1
Joined: Jun 2011

No mammogram should be needed. If any cancer, it would be very superficial and you would feel it. You are done with mammo's

Harley63
Posts: 8
Joined: May 2011

I had reconstruction, so I am not flat. There could even be something in my chest wall, and no one would feel that.

Thanks, though.

Harley

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