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SusaninVA View Drop Down
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    Posted: Mar 20 2017 at 12:41pm
Thanks, Nikki, & Gordon, Yes, I had a good week. Nikki, when you use the word "limbo" I have to tell you I just finished a book entitled Dancing In Limbo: Making Sense of Life After Cancer, written by two cancer survivors. I don't feel that I am "dancing" quite yet, but am working on it! Truth be told, everyone on this Earth is "dancing in limbo", most of them just don't know it! We have a heightened sense of just how wrong things can go now, and it is a lesson we will carry with us. And, yes, the 2 year anniversary will be sweet to celebrate! Gordon, when I refer to "diagnostic mammograms", I mean the mammograms given as follow-up after treatment has ended. (I am currently on a 6 month schedule). I have them at the hospital and a radiologist reads them while I wait. I can choose between either digital 2D or 3D imaging, and I always go with the 3D. A prescription is written out for these diagnostic mammograms, and I always make sure they say "3-D" because the machines are different. Some insurance may not cover 3-D, although they really should. My insurance requires a $35.00 out of pocket which I regard as well worth it. According to a website I just checked, the 3-D "provides images of the breast in 'slices' from many different angles..." www.stopcancerfund.org/p-breast-cancer/is-digital-mammography-better I have scattered dense breast tissue, so personally I think 3-D is the way to go. Your wife may want to inquire about that. I hope she is doing better; please tell her I send my best wishes. Hope everyone enjoys this first day of Spring !!!!
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 19 2017 at 3:12pm
Susan, they won't do a breast MRI until they see something suspicious on an ultrasound, my wife also had some lymph nodes positive, and they removed those.

My wife also is BRCA negative, she had a lumpectomy (IDC/Lobular/in 2008)

I assume, when you say "diagnostic mammograms" that means "digital" right? The digital mammograms show more detail, especially like my wife, who has " dense breast tissue"...

I'm not a doctor, so I don't know if " and only 2mm from my chest wall. " is important, as to prompt a MRI, if you (like my wife) have a recurrence, they can use targeted radiation, I would think.

A re-excision is not uncommon, when my wife had lumpectomy in 2008,(non-TNBC) the surgeon did not achieve a good margin, so she had another lumpectomy, when a PET scan indicated it.

I think the best avenue for dialogue regarding is thru your surgeon's or your oncologist's nurses. Like I said, you might be fine. You may not have recurrence at this time. You can ask if you could get approved for a PET/CT scan once a year, which would show any "hot spots" of your cancer showing metabolism.

Hope this helps...


wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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AZNikki View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Mar 19 2017 at 12:54am
Hi Susan, hope you've had a good week Smile I forgot to mention that my MO isn't a huge fan of MRI's as they can give a lot of false positives so I didn't push much to have them as I have the mammo and US every 6 months. And, yes, our timelines are only a few months apart. I don't know about you but I can't WAIT for that first 2 year milestone! This limbo is killing me! Wacko
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2017 at 11:58am
Hi Nikki and Donna,
Yes, I have a love-hate relationship with my insurance company now. They did great during my year of treatment (never had to call them or contest anything as long as we paid our deductible). And no way could I have paid for all the treatments on my own. I just returned from a check-up with my Radiation doctor (the only doctor I ever had who wants to be called by his first name, so I call him Dr. Alfredo!) I asked him his opinion on the MRI denial, and he did not seem that upset by it. He said the MRI can catch something somewhat before a mammogram does, but he felt I am in good hands getting the 3-D mammograms. He also mentioned the expense of the MRI. Of course, we don't like to put a price tag on our treatment when it involves Triple Negative, but the insurance companies are going to do that. I can appeal the decision, and I plan to ponder that during the next week or so. Donna, I remember your history with the internal mammary nodes, and I forgot to ask him if this is something the MRI would pick up on. Nikki, it sounds like your tumor did grow overnight ! You have a very high KI-67 measurement of 99.59%. I believe my measurement was 40%. My nurse practitioner told me that Triple Negatives are called "interval tumors" because oftentimes they manifest themselves between mammograms. I am so thankful you found the lump !!! That is amazing because your tumor was so deep and close to your chest wall. I never felt a lump until I knew they were looking at something. And then I could feel it if I bent over and palpated that way. However, I did feel a "twinge" in that breast a couple of times and mentioned that to my GYN. I asked for the 3-D mammogram to be more thorough, and that is what picked it up. Nikki, you don't have to pay the full amount for your 3-D do you? Cigna does pay most of mine, all but $35.00 and that is OK. And thank you, Donna, for all of your posts, keeping us informed when you see a new article of research. It makes me feel good that Triple Negative is being researched so much. Some days it just feels like all this has been a terrible dream, or an awful misunderstanding with my body. But this website is still an important part of my life - it keeps me grounded and helps me to remain thankful, and to realize how precious our lives are. I wish both of you, and all the women and men (and bless those men who post on here for their wives, mothers, and sisters) on here, peace and hope. Please keep posting, and Nikki, we are about on the same timeline, so maybe we can share how we feel as we celebrate our second anniversaries of diagnosis.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 14 2017 at 7:12am
Hi Susan,

It seems insurance companies are not our friend.  Some administrator is making these coverage decisions instead of your doctor. Angry Could you request an appeal to Cigna?  Any other options to write or plead your case?  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Mar 14 2017 at 12:08am
Hi again, Susan--I'm happy to hear your mammo did it's job! I actually had my yearly (digital instead of 3D) done 6 weeks before I felt the lump so that's when I went for the US and got the surprise of my life, too. My MO said that it's even possible that it was there but too small to be visible on the film yet! I know TN is a fast growing variety but what? ConfusedFunny you didn't post here during your treatment, I didn't either and just read, read, read it all, haha. So the only way Cigna will cover a US is if your mammo picks something up? It blows me away that ins companies aren't interested in preventative measures after something like this. I know I'm partially responsible for my US, too, as the bill just came the other day and it's almost $400 but a smaller part of that is because United Healthcare won't pay for 3D mammo, only digital. Like c'mon already, it was CANCER, people!Wacko  
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2017 at 9:30am
Thanks so much, Nikki ! Yes, having the tumor so close to the chest wall is scary. I'm sorry your surgeon had to take some muscle; my surgeon did clear the margin down to my muscle. (Thankfully, that margin was clear.) Cigna did say that if indicated on the next mammogram, I could follow up with ultrasound. I also get the 3-D mammograms; I am told they are so much easier for the radiologist to read. And yes, I have found much comfort here. Did not post any during my illness because I was just too exhausted, but I sure did read a lot ! I see you had 5 boosts during radiation - my radiation guy added boosts to take care of a pinpoint remnant of DCIS which saved me from a 3rd surgery. That is something that your tumor was not picked up by mammo; so thankful you had the ultrasound! Mine was picked up by mammo, and I had two doctors tell me it was probably benign. Thank goodness they did a biopsy just to be sure. Boy, was I surprised !!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2017 at 10:24pm
Hello, SusaninVA, welcome to the forum :) I'm glad you have found some answers and hopefully some comfort here. Your timeline and dx are very close to mine! I found my tumor in July 2015, BRCA-, 1.6 cm, very close to my chest wall so the surgeon also had to take some muscle with the lumpectomy and ended up with 3 axillary nodes positive. I have United Healthcare and was also UNBELIEVABLY turned down for MRI's. They absolutely wouldn't budge so I now have 3D mammograms with ultrasound every 6 months instead, which helps me sleep at night as my original tumor wasn't even picked up by mammo but was clearly visible by US. It amazes me every time I hear of someone being turned down for scans after treatment, unreal. Best wishes and congrats on almost 2 years since dx! 
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2017 at 9:06pm
Hello Everyone,
This is my first post - I can't tell you how much this website and these forums have meant to me since diagnosed May 2015. I have learned so much from everyone here! Now I need more advice - my surgeon scheduled a breast MRI earlier this month as part of his protocol. So far, diagnostic mammograms every 6 months OK. My insurance, Cigna, has denied the approval for the MRI. My surgeon even called them and had a peer to peer review and still they will not approve. Was wondering how many of you with lumpectomies get breast MRIs during first couple of years, and also, have any of you been turned down by insurance for this procedure? I am not Braca positive. My triple negative tumor was 1.8 cm and only 2mm from my chest wall. I also had microscopic grade 3 DCIS which had to be cleared out with a re-excision. Two lymph nodes positive, so had axillary lymph node dissection. Any tips on how to handle the insurance company? I continue to remain thankful for each day......   
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