Really long vent/rant

sewonmyown

Really long vent/rant

sewonmyown

Pardon me, for a really long rant, I just needed a space to vent and spew. My frustration with having no diagnosis for my mystery health condition, being in constant pain and discomfort, and no way to pursue a diagnosis is beyond maddening.

Long story short,  my rads ended in Aug. 2011 and I lost my health insurance when I moved to another city to live with my partner of three years. After the move I started school full time and applied for state insurance based on my breast cancer diagnosis.

I was denied because I hadn't been screened through a particular program offered by my local health clinic and then denied again when this program's mammo was negative. I couldn't afford to pay out of pocket for an MO.

During this period of time, from August until late December, I experienced edema in my feet, legs, hands, face, and abdomen, along with shortness of breath upon exertion, joint pain and intermittent random shooting pains all over. Two Dr.'s from the clinic and a referral to the gyno later, and no diagnosis. Diuretic prescribed that had horrible side effects and was discontinued. I was offered other band-aid RX's like anti-anxiety meds, sleeping pills, and hormones (I'm er/pr+) which I declined.

Six months later when symptoms had not abated, I saw a new Dr. at the clinic who prescribed Lasix, which worked fantastically for six weeks. Everything went away-yeah! Then by Feb. of this year, it quit working and everything came back with a vengeance plus additional aches and pains, including swollen lymph nodes, rib/sternum pain, non-cyclical breast pain, tailbone pain, shoulder pain and numbness in my right thigh. Of course, my mind reaches out to recurrence/mets, but I know that i'm not eligible for mammo until April and that I won't qualify for any other diagnostic testing until I have the mammo. If my Dr. refers me for x-rays or scans, I still have to pay a portion out of pocket.

In mid Feb. I called the clinic to get the mammo ball rolling and met with the program admin. While I'm filling out the paperwork the admin tells me that two months after I applied for the state insurance the first time, the state changed the program so that any breast cancer diagnosis would qualify-not just those diagnosed through the program. Problem is, the state didn't tell anyone, including DHS and social workers, about the change. Now that a year and half has gone by since my last treatment, once again, not qualified. Ugh!!!

The admin takes me to get an appt. with my Dr. for the annual breast exam that is required to be eligble for the mammo. Dr. has no appointments until the end of April. But, I can call every morning at 8 am to see if there is a same day appt. available in the afternoon. After three days of trying this with no sucess, I give up and wait for my April appointment.

I finally see the Dr. and describe new pains and RX failure. She wants to try a calcium channel blocker in combination with the diurectic. Asks me come back in two weeks to see if that aleviates all the problems. She does the breast exam, is concerned about a dimple in my Lumpectomy scar, a new lump she can feel next to the scar and a cyst that is swollen on the other side of the same breast. She also checks my lymph nodes but makes no comments. I ask her to feel my right breast where they did an ultrasound last year for microcalcifications. She says she feels nothing there. Sends the order for diagnostic mammo and ultrasound. The imaging center calls and makes an appointment for two weeks out. In the meantime, I find a new lump on my right breast, just above my nipple, the day before the mammo.

I'm thinking okay, with all this pain, the new dimple, the new lump, and the swollen cyst, the new lump on the right breast, they will find something (I don't really want to have cancer again, but in this case, I almost do, just for the relief of  a diagnosis of something tangible) which leads to insurance which leads to proper medical care which hopefully leads to relief of all the pain.

The brochure the imgaing center sends out says to expect two to four hours for diagnostic mammo and ultrasound. Last year I was there for at least two hours. My partner drops me off and makes plans to be out running errands for at least that long. I go in, change into the lovely pink jacket, wait in the blue waiting room, and am called in. The nurse asks me where they are supposed to look. She wants me to point out all of the areas so she can tape them off. I describe each spot as well as the pain I'm experiencing and the fact that I haven't been able to wear a bra for a week. She whips me into the machine, takes two pictures of each breast, one from the top down and one from the side and sends me back to the waiting room.

The nurse comes back and takes me to the ultrasound room where the tech asks me to point out all of the areas she should look at. She does a quick roll over each spot and takes a few pics. This takes about ten minutes. She leaves me to show the pics to the radiologist and comes back with him in tow.

He introduces himself, tells me that because I found the lump in my right breast, and I have a history of cancer, he will do a needle core biopsy right away to rule out cancer (his look conveys that it is a C.Y.A. measure-that normally he wouldn't bother). He assures me that he knows it is b9 but "because of my history" it's better to check. Two minutes later I'm done. I forgot to ask him about my left breast so I ask the tech. She says, "all clear." I meet with the scheduler and have an appt. in a week for the biopsy. Total time in the center was less than an hour.

Am I wrong in thinking that a diagnostic mammo and ultrasound should have been more thorough?  Last year they took pics of every angle conceivable. And yes, they did have a baseline from the year before. The utlrasound tech from last years mammo didn't ask me for directions, but when right to the area of concern and took lots of pics. I was with her for about thirty minutes.

My instincts are telling me that I should push harder and look further. My frustration in all of this lies in the fact that I feel helpless. I have no recourse. I can't just pick up the phone and call an MO or a breast surgeon. I can't just go get a second opinion.

I will be seeing my PCP for a follow up on the meds and will relate all of this to her. Would she be able to refer me for an MRI? What other options do I have?

If you have read this far, thank you. I feel much better just getting that off my chest.

Warm regards,

Michele