AD/Res/Retired/Med Discharged/Dependents/Tricare & Infamous VA
Hello all,
I'm looking for anyone and everyone in any of the above categories. We all have so much in common and can learn from each other about how to navigate our continued bureaucratically crappy system of health care. I have requested that a forum be created for us so that we can connect and help each other more easily. Please post something here - anything really - so that we can find each other. I, personally, have lots of questions and would like to get feedback from those who have been or are still in the trenches. It would be great to vent to/with someone who understands my nightmare.
Comments
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Hi Nikki:
My DH is retired Navy and we have Tricare Prime. I've not had any problems with appointments, surgery, tests, referrals and hope I'm not jinxing myself by saying this now!
Please ask anything you want, I hope to be able to help you navigate Tricare....it sure has been a blessing for me. Of all the things I have to worry about, how to pay for my treatments, appointments, etc has not been one of them!
LaDonna
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LaDonna,
So very glad to hear from you! I hope and pray you never have any problems with tricare or your treatments and such. I certainly do not want to jinx you.
Since your knowledge is of tricare, I'll ask those questions first.
Through the process of diagnosis and treatment, did you have to use mil medical facilities (hosp, docs, etc.) or did you get to use civilians? If you had to use any mil medical, how was that experience? How was the timing for getting appts and treatment? Were there any delays? Any info would be greatly appreciated.
Thank you so much for taking the time to respond. I so greatly appreciate it. I am hoping that the mods decide to give us our own forum because our experiences with getting and requesting treatment can vastly differ from the others.
If you know of anyone else who is in our category (mil/retired/dependent/tricare/VA) please ask them to post here.
Thanks so much. -
As an Army Veteran but not military retired, I use the VA healthcare system. While I do have insurance, I've gone through them for this as they were the ones that found it.
Sally
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Sally,
Thank you for responding! What has been your experience with the VA? Anything you feel comfortable sharing would be greatly appreciated. I am really concerned about getting the proper care in a timely manner. I had to deal with a horrible witch of a woman at the VA who processes referrals. She wanted to stick my on the back-burner and get to my referral when she felt like it. My wonderful regular doctor that I used when I still had tricare, knew that it was time for my 6 month mammo/us so he just sent the referral in without contacting me (very nice). Unbeknownst to him, I was having some serious breast issues and had just gone to the VA for help the week before. Anyway, my VA doctor sent in a referral for me to have a mammo/us for my "serious breast issues". On Monday, I got a call from the scheduling dept of the hosp that was going to do my mammo/us. I thought it was generated from the VA referral. I made the appt for Friday (tomorrow). The next day, I get a call from the witch at the VA telling me I had to cancel my appt for the mammo/us or pay for it myself because she wasn't going to get to processing my referral for awhile because she had 90 others to do before mine and she gets in at least 90 a day. OMG! I was so pissed. She was horrible. After some yelling, she finally decided to do her job. But, we really shouldn't have to be treated so disrespectfully. So, I'm concerned about how the process will work at the appt tomorrow and after.
Whatever you are willing to share, I will be very grateful and thankful.
Thank you. -
Nikki:
I live in Meridian, MS and we do have a Naval Air Station, however, our medical clinic is very, very small and I've never really had to use them.
I've always used civilian doctors and I had the same family doctor for about 10 years until he decided that I was too young (at the time I was 50) to have diverticulitis even though the ER doctor made the diagnosis after an exam and testing. So I changed doctors and ablsolutely love my doctors/nurse practitioners that both me and DH go to on a regular basis.
They are so easy to get in touch with, all I have to do to get a referral is to call the office and speak to their "tricare specialist" and she sees to it all the paperwork is submitted for my referrals. My DH has had some minor health issues and it is truly a blessing to have such a great medical team.
I make sure I have the correct paperwork so that none of the doctors claims are rejected for some "minor" thing. Tricare is so much easier to deal with now than in the past.
When I went for my regular mammo last August, the doctor "saw" something that was not there the year before and took me to the ultrasound room to verify what she saw. That was on a Monday and I was in the surgeons office on Wednesday to set up an excisional biopsy. I left there and went to my family doctors office and spoke with the "tricare specialist" and she got my referral in to see the surgeon so that everything went smoother for me.
Again, I am very blessed to have such a great medical team as well as the support of so many friends and family while I travel this road. I'm looking forward to an "all clear" at my mammo in September.
Please feel free to ask me anything you want to know. The ladies on these boards have been so helpful to me and I'd like to be able to help others by answering any questions anyone may have.
LaDonna
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I'd be happy to share Nikki.
Considering how slowly most of the time that the VA moves, my care was fast! I'll give a time line so you get the picture. By the way, here in Tampa we're VERY fortunate that our VA hospital has one of the few Breast Clinics in the country. The ONLY test prior to making my decision of what option I chose was the Breast MRI and it was arranged promptly and a local Radiology facility.
11/18/11 - Annual Screening Mammogram
12/1/11 - Diagnostic Mammogram (remembe, we had Thanksgiving in between which slowed things)
12/8/11 - Ultrasound guided biopsy
12/14/11 - Diagnosis Appointment
Either 12/23/11 or 12/28/11 - Breast MRI
1/4/12 - Options Appointment - by then it was known what type of BC
1/10/12 - Second Opinion at local Cancer Center (NCI)
1/15/12 - Called Breast Clinic with my decision, scheduled surgery
The day of regular pre-op, also met with OT for pre-surgery measurements in case of developing Lymphedema. There is a program there, although only one person is qualified in the entire hospital.
2/9/12 - SNB Prep
2/10/12 - Bilateral Mastectomy (delay was at my request due to a scheduled vacation and son needed to be back from his Reserves training for the event)
3/8/12 - Oncology Appointment
Since I was not permitted to have immediate reconstruction mainly due to the type of BC I had, it was delayed.
7/9/12 - Reconstruction, Diep Flap (unsuccessful)
Still dealing with post-of appointments in Plastic Surgery, as there is still one drain in and also a seroma to be taken care of.
Going back to OT following this recent surgery too.
8/23/12 - Oncology Appointment (new Oncologist as prior one departed, need new Hormone treatment plan due to throwing blood clots during reconstruction surgery - no longer can take Tamoxifien)
The BS was very personable and good at what he does. He's retired Navy btw. The PS is Army Reserves currently. Almost every thing is handled by the NPs in the Breast Clinic. For both surgeries, I actually was in the same patient room. I think it's their "female" room. Never knew of any other females than the roomie on that floor. Actually, NO one other than the Breast Clinic team is permitted to touch the bandaging other than to peek down into it. This policy drastically reduced their rate of infections.
What else can I share with you? If you feel the treatment isn't up to par, visit or contact the Patient Advocate for your VA Hospital. I sure did when I was called by the Business Office about my insurance less than 24 hours after getting out of surgery and while I was in the ICU!
Sadly, I can share that the day of the diagnosis appt, out of eight scheduled that day, only three were for women.
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Did this help at all, contacting Patient Advocate???
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Yes, it is helpful. However, I'm not having good experience with the VA. I had my diagnostic mammo/us but neither the techs nor the radiologist would listen to my concerns. I have the bee sting, stabbing pain in breast through to armpit on left breast. I have pain in 3 spots in armpit area. I have what I think is a swollen lymph node at top of breast bone and just below collar bone on left side. They refused to check the painful areas on my breast but agreed to check my armpit with ultrasound. My mammo came back clear. The ultrasound did not find the mass they were rechecking from previous 3 mammo/us's. However, they did find a new mass in the area that they said they would not check. My armpit showed swollen lymph node 1.5 cm. This evening, I found a lump in the same area as the new mass. It is painful. When I touch it, I get a pain that radiates through me to my back/shoulder blade area. Yesterday, I got a call from my VA doctor to discuss the mammo/us findings. He said he could refer me to a general surgeon. I asked him to refer me to a breast specialist or a VA breast clinic. He told me that he is not allowed to make those types of referrals and best he could do was the general surgeon and did I want that. I told him that if that is his only option that makes it my only option so, yes, give me the referral. I told him that I knew that there was a VA breast clinic in Tampa and I think Jacksonville and I am willing to go the distance to get specialized care. He still said no, that he does not have authorization to make such referrals. I'm very upset by what I feel is a lack of care. We only have a VA clinic here. No breast specialists in this town anywhere - not even civilian. So, now I'm waiting for the referral to the surgeon and hoping he will do the right thing for me but really, I have ZERO confidence in the VA. By the way, did you know that there is congressional effort to begin studying a link between breast cancer and women who served in OIF/OEF in the desert? Apparently, there is a disproportionate number of us military females who were deployed there who are being diagnosed with breast cancer. This really is concerning for me because I found a paper in my medical record stating that while deployed over there, I was exposed to unknown toxic chemicals. Wow! That blew me away. No one ever told me that. I just found it when I was copying my medical record for the VA.
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He's SO wrong. MY PCP referred me to the Breast Clinic. WTF! Sorry, had to say it.
Contact the Patient Advocate immediately! That's scarey, about the OIF/OEF thing. I never deployed so can only imagine.
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VA clinic has a patient advocate??? I will google that in the next few minutes. Do you know if your breast clinic takes walk-ins or do I have to have a referral? Tampa is a long way but I'm desperate for answers. These people have not been good to me so far. Well, except for my doctor's nurse. She has been wonderful but she is only a nurse and can not write referrals.
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Well, the VA website talks a good game about patient advocates and their purpose but give no info on how to contact one. Guess I will just walk in and try to find out who that person is and how to contact. It's really sad that there is very little info available for womens services through the VA. I really expected to find detailed info on the breast clinics and breast specialists but there is only a small blurb about general womens care. No specifics. Just a name number and address to contact for more info. Another problem I seem to have with the VA is that no one ever answers their phone. I always have to leave a message. Sometimes I get a call back. When I was first trying to find out if they would see me for my breast problem and what kind of coverage I had through the VA, I had to leave a voicemail and wait for a call back. When the guy did call back, I was on the phone with my brother who was having a medical emergency and I could not switch over to take the call. The VA guy from the VA left me a voicemail that said that if I really wanted the info I should answer his call and to call back when I really needed the info. He did not leave a name or number for me to call back to get the info I desperately needed. I had to call that stupid VA number again that no one ever seems to answer. I never did get an answer. I just finally walked into the local VA clinic and said, I think I may have breast cancer, can you help me. I HATE the VA. I have earned quality health care. However, I'm being treated as an inconvenience. Just shameful.
Thank you for the help. I think I'm losing my mind. -
I am the spouse of retired Air Force and have Tricare Prime. We live near MacDill AFB which has a hospital/clinic, but no inpatient or specialists for breast cancer. I see docs in Family Health for routine care and any imaging that they have equipment to perform in relation to my BC care, such as echocardiograms and bone density scans. All other care is done by civilians that I have been referred to through Tricare.
Do you live in Pensacola? I did a quick google check and found this location: http://www.sacred-heart.org/breasthealth/page/?ID=419 Is this near you? Can you be seen there?
Also, here is a link (with phone numbers) to contact the Women's Health program at Haley VA Hospital here in Tampa, where galsal was treated - maybe they can connect with someone within the VA system that is closer to you, or can arrange for you to be seen by them.
http://www.tampa.va.gov/services/womens-health.asp
Hope this is helpful.
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SpecialK, thank you very much for the info. I did find the info on here but was told that I would not be allowed to use them. I like the idea of contacting the place galsal used as well. I'll try to call them Monday morning before I go to the local VA clinic Monday to try to find a patient advocate. Thank you both so much for the help. I have to say that I am so grateful for this website and all the people here. I would be so lost and alone without it and you all.
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Do you use the VA Gulf Coast Healthcare System? This is the link for their Patient Advocates. Each hospital has their own. http://www.biloxi.va.gov/patients/customerservice.asp
I'm sending you a private message so you can contact me. I'll give you the direct number to the Breast Clinic so you can ask them how to proceed. I'm sure they'll be able to help you!
Sally
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Thank you, Galsal (Sally)! You ladies are wonderful. You are going to make me cry - the good kind. I was feeling so lost. Those of us who have to use the VA or military medical facilities, don't get a choice in doctors. We have to deal with what we are given and try to find ways to make it work. I think we are unique from most other people because we have to deal with a level of bureaucracy that no one else seems to have to deal with. It seems to me that most others get to pick and choose their doctors to find a good fit. Thank you all for taking the time to help me.
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Nikki...you are NOT alone! I've sent you the private message. Feel free to contact me! One lady I met in the waiting room of the Breast Clinic is from Melbourne and another from St. Augustine. Both told me there's no Breast Clinics any where else but Tampa. The Breast Clinic follows all BC patients for Five years and confers with the Tumor Board during the initial stages of your case. They know all their patients by name and face. I often see the BS in the halls when I'm there for other appts and we have, chat to say hello, how I'm doing, etc.
Right after 8am on Monday, call your facility's Patient Advocate AND the Breast Clinic in Tampa.
Btw, I was assigned my PCP as were the others. However, we have a true Womens Center here and not just a Clinic. There's even a Womens Imaging Clinic. When I had my MRI in December, they had to send me out since the equipment for that specific test wasn't yet installed and implemented. All other imaging tests and biopsy were done at the Womens Imaging Clinic and also Radiology.
Plastic Surgery Clinic is also in the same building as the Breast Clinic. Certainly convenient!
You deserve the same treatment we get here!
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Thank you so much. I just replied to your PM and you answered my question here about calling on Sunday or did you mean Monday. I will call them first thing Monday. I am so happy that you both found me here on this site. I really was so lost. Now, I feel like I have a viable plan. I will keep you posted.
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Oh my gosh, I'm so glad to have been of some assistance if merely to help calm your fears.
Here, it's standard for any breast biopsy to be referred to the Breast Clinic. Nothing was reviewed with me before meeting with them after the biopsy and the only Surgeon I met with as part of the diagnostic process was the Breast Surgeon. My PCP happens to be the Chief of the Womens Center and is the one that put in the orders for the tests, biopsy, to the Clinic, etc.
Do you have a copy of the report? That will make it easier to know what it says.
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Please, do let us know of an update when you can!
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Very sorry Galsal, I meant to email you earlier today. I received a call from the VA general surgeon's office this morning just as I was picking up the phone to call the breast clinic in tampa and the patient advocate. They made me an appointment for tomorrow morning. If he can find the lumps and lymph nodes, he will biopsy in the office. If not, they will schedule the biopsy. The scheduler said that the surgeon had an order this morning that he was to get me in this week. So, they are working me into their schedule at 10:30am. I was so shocked that they all acted so quickly that I couldn't think to do anything else today. I will keep you posted on what happens tomorrow. I'm still in shock. Thank you for all your help and thank you for checking in on me.
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Good to know they're doing this! Yes, yes...do fill us in how it goes.
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Appointment was disappointing. Here's the run down: took my blood pressure: 154/90 HOLY CRAP! Mine is normally, 100/60. Clearly there is something wrong but no they told me that's a normal BP. Surgeon does breast exam. Can't feel the lumps or find the lymph node. No biopsy of any kind. But he would try to aspirated the lump using an ultra sound as guide but would not send it off for pathology would just through it away. I don't like that idea so did not do it. He told me that the VA won't allow MRI for breast density (I'm 75% density). I asked to get referral to VA breast clinic in Tampa. He said he didn't know there was such a thing and couldn't refer to it because he doesn't know how. He said he would check on that to call back every Friday to see if they have figured out how to do a referal to there. He said breast cancer doesn't hurt so take Motrin. The nipple did not discharge blood during breast exam so nothing he can do about that. It did discharge just not blood. He said probably from a papilloma. He said cancer grows very slow so no big deal to wait and watch another 6 months since he doesn't think it's cancer anyway. Useless. Just useless. I HATE THE VA. So upset I just left. Forgot about seeing pt advocate. Now I'm going to have to go back. Aweful. Just aweful. I wish I would have said, if your penis hurt, would you settle for 6 month watch and wait??? I've had so much smoke blown up my ass that it coming out my ears.
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nikki - sorry this didn't go well. I would call the breast clinic in Tampa with the above contact info and ask them how they get a patient referred to them from another VA center.
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I ran into on of the Nurse Practioners from the Breast Clinic today, she said you should indeed call her Nikki when I told her I'd given you their names and number.
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Thank you. I will call her first thing in the morning. Thank you so much. I told my hubby about you and everything you've said. We are both very grateful. I will try to remember to send you an email to let you know how it goes.
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Please do, you are MOST welcome. Please do tell Bev how the Dr you saw knew not one thing about referring to the Breast Clinic or that it even existed!!
Any Dr or Clinic that I see in connection with my BC treatment, the Breast Clinic knows about. While they haven't needed to see me for several months, they follow what goes on with me.
Btw, I'm 75% density of the breasts and had a Breast MRI through the VA. As a matter of fact, BS said even if I did not have BC that I shouldn't EVER have a mere annual screening mammogram again based on the density.
Get Beverly on the horn...I feel your world will change for the better. I'm SO glad I ran into her and flled her on on the basics for you.
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Oh, me too. Girl, you may have changed my world. Before I got your message, my husband was saying that he would just try to scrape the money together or borrow it or something so that we can pay for the MRI ourselves. I promise, I'm calling her in the morning. I will tell her the whole freaking story. I do wonder why the surgeon said all that. My hubby thinks its a dismissive male attitude toward the women veterans and female issues. He told me to report the details of this appointment too because if I was treated this way then it's highly likely that many women have been treated this way. It's just wrong. Sometimes I just want to scream WHY ME?!?! Why can't I just have a normal experience for once. I'm just so tired of having to fight for proper health care.
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Get to the right place, dearie. I've not had to fight one iota about any of this.
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Will do. : )
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Thank you also to specialk, I didn't mean to ignore you. I tried to answer back to you earlier but it's difficult from my phone. I have to say that I'm starting to feel that there is a bit of a prejudice against women vets here in Pcola. When I first went to establish myself at the VA last year, the WOMAN processing me was condescending about my military service AND refused to believe that I had ever been in the desert (combat zone) even when I showed her my DD-214 which specifically states COMBAT VETERAN.What is with these people? Anyway, thanks again to both of you.
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