Testing only...... Blood Plalets for recurrance???

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Traci40
Traci40 Member Posts: 41
edited June 2014 in Triple-Negative Breast Cancer
Hi Ladies,
Well, I'm done with chemo. Trip Neg, BRCA 1+.
I asked my onc today about scanning for recurrance today and what we do next.
He said that NO insurance company would pay for regular PET scans or MRI's and, that getting regular scans was bad for you. One PET scan is like getting 100 x-rays and exposes the body to way too much radiation. He said he would regulary (wants to see me in three months) test my blood platelets for abnormalities and that I should "Really get to know my body and watch for signs."
Has anybody heard the same??
God, I am trying to stay positive but.....I sure wish I wasn't triple negative!!!!
Thanks for any advice.
Sincerely,
Traci
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  • Traci40
    Traci40 Member Posts: 41
    edited August 2007
    By the way, didn't mean to scare anyone......just looking for advice.
    Traci
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  • Renairis
    Renairis Member Posts: 38
    edited August 2007
    Hi
    From experience I think that bi yearly ultrasounds can catch suspicious looking changes.
    Usually women with brac are allowed to get mri breast exams once a year. My insurance covers it.
    Markers can also be taken twice a year and compared to see if there are changes.
    The brca gene is a risk factor for recurrence and it's good to be on the safe side.
    Rena
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  • Traci40
    Traci40 Member Posts: 41
    edited August 2007

    Hey Rena, but......I cut both my breasts off! What about scans for the cancer spreading....???

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    TRACY

    I just recieved a copy of my PET/CT scan billing that was sent to my insurance. I can see why they don't approve routine scans. The bill was just slightly under $18,000!
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  • Renairis
    Renairis Member Posts: 38
    edited August 2007
    Tracy
    Hi-
    Sorry I didn't know that information that you had a double mastectomy. I regret I didn't have that surgery because that may have very well prevented the mets I have to deal with. I believe you did the right thing by having this surgery, however difficult it must have been.
    Pets and blood tests for markers are the only tests I am familiar with and it is so maddening that the insurance won't always cover the PET scan like in Jean's case. I wish I could give you more info /or that there were more ways to keep a very close watch.
    Rena
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  • bsbroth
    bsbroth Member Posts: 15
    edited August 2007
    Hello,
    I am triple negative also. I was a stage 2 in 2004 (age 34)and had a bi-lat mast followed by 4 rnds AC. Recently diag with recur, stage 4. Went to Johns Hopkins and I am now in 4th month of taxol and avastin. This combo has worked for me and my last scan showed no signs of the monster. I'm an RN and it is my understanding that the scan costs between $4,000 and $6,000. I've had two in the past 4 months and I was told that the amount of radiation I would be exposed to was no more than a normal x-ray. Hope this helps, Good Luck and God Bless.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Sherry

    I have no idea where you live but my PET (Cedar's Sinai) cost $17,672.48. That was only the PET/CT. As for my bone scan done 2 days later, I have no idea what the cost was as I have not recieved a copy of billing.

    What is really unbelievable is my lumpetomy cost only a little over $15,000! (That included OR, Pharm, Pathology....everything except my Surgeon's fees. These prices are unbelievable. (There's a sign posted thanking the person or company that donated the machines!) Go figure. They probably perform 8-10 PETS a day on EACH machine. Something really needs to be done about medical care and the cost thereof in this country
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  • Traci40
    Traci40 Member Posts: 41
    edited August 2007
    Sherry,
    I am so sorry to hear about your re-occurance.
    How did they find it if you had a bi-mast?
    God, I'm so scared of this......I hope your treatment continues to work...
    You know what pisses me off???? We can pay Mike Vick $138 million dollars to play football and kill dogs but, we can't get a freaking scan to dedect cancer????
    GAWD......................I'm so upset. I'm really upset.
    o.k. I feel better now.
    Sherry, please reply when you get a sec.
    Thanks,
    Traci
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  • SoapMaker
    SoapMaker Member Posts: 157
    edited August 2007
    Quote:

    Something really needs to be done about medical care and the cost thereof in this country



    I so much agree with you. Cancer has become an industry. $4,000 for a bag of chemo...$20 for one Kytril pill. Something really, really needs to be done. It wasn't like this in the olden days and the medical establishments survived. What is so different, now? When I had my last child, 32 years ago, I was in the hospital for 5 days and the bill was $900. Somebody has just gotten really greedy.

    ----------------------------------------------------------
    Where is the cure
    www.truefacesofbreastcancer.org
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Cin54
    You are so right. I was given 2 RX one for Emand was over $150 a pill! (3 pills) and the other was $290...these were just to stop me from vomiting! There was no way I coudl pay for these along with 2 other Rx if my insurance wouldn't pay. My dh was fighting with insurance until 3:15 to get the darn approve these meds. My chemo was to start at 3:30. I ran from the Pharmacy across the connecting "bridge" to the hospital infusion center.

    There's no reason for this....Iam going thru enough with this chemo, surgery and all the other things that go with BC, than to be fighting for some medication 15 minutes before my chemo starts.
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited August 2007
    As far as I am concerned, the surgeons, oncologists, radiation oncologists and research scientists and physicists, the nurses, techs, and all the qualified persons who chose a career in the treatment of cancer, deserve every penny and thensome, as it's an ugly, grusome, sad disease in which they are knights in shining armour, princes, loving humans who are fighting demons in the depths of darkness and hope for a glimmering light to guide their way.

    Insurance companies, quacks, lawyers, tne system, the politics, government, pharmaceutical companies, and greedy uncaring "third man" atttitudes are the true cancer.

    It is a business, a commodoty, an enterprise that make millions. But ask any physician, and they'll tell you, nothing would give their life greater joy than to find a cure, a real cure. We're talking about brilliant minds, with husbands/wives, children, parents, friends, and so many who suffer from this barbaric, evil disease.

    Who is making all the money, anyway?

    Indi
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Indi

    I find your posting a little one-sided and very hurt hurtful for a number of reasons.

    First, many of us have experienced terrible, uncaring people during our BC fight, be it a surgeon, oncologist, nurse, or office personnel. Many of the nurses are extremely rude and will continue to stab and twist the needles when attempting an IV, (sometime until we pass out) rather than admit they may need help and call someone that knows how to start an infusion.

    During my son's 2 1/2 years of chemo, I can't tell you how many infusion nurses would not listen when informed about his “rolling veins”. We have both had to sit while being stabbed again and again. During my first tx, I was bleeding so badly they had to get me a TOWEL. A week later, when I saw my oncologist, my right arm was bruised from elbow to wrist, front and back, and my left slightly bruised from where the IV was finally inserted. Our bodies have been put through terrible pain because a so-called "caring" person would not admit their incapability and call in someone that knew what they were doing.

    There are some doctors that are so callous they will leave a bc dx on an answering machine! Can you imagine checking messages only to discover you may be dying of bc?

    Personally, my lump grew overnight. There was nothing there, and 2 days later a very large mass had been discovered. My GP immediately sent me for a mammo/us. She then fought to get me in, as they wanted me to wait 2 months!

    Following my mammo/us, I was taken to the radiologist where last year’s mammo was on the wall next to my new one. He was shocked to see a huge growth, and in such a short time. He said I needed this removed and biopsy immediately, and absolutely no longer that 10 days.

    I immediately saw my surgeon, who agreed with the two other Drs, and wanted to perform the surgery ASAP, but his nurse had other ideas. When I entered her office, she was in the process of arguing with an ill patient about her surgery. (This conversation should have been done in private.) She told us this “sick person” had ruined her day, and then quickly went about ruining mine.

    She refused to schedule my surgery any sooner than 3 ½ weeks! Forget what 3 drs said about it being an emergency. She then started yelling at me. She claimed I had no idea what is wrong with me and would not until after the surgery. (this bc was expected as my mom and g-mother died of bc)

    Three Drs had conclued I had IBC and waiting three weeks, was not an option, as this appeared to be very invasive cancer, and they were all correct. I was Stage Three. She refused to allow either me or my husband to speak with the surgeon again, until my surgery. He had not only told us to call anytime with regards to questions, but if after speaking with his nurse, he would perform a needle biopsy, if I wanted it done but this "caring" person disallowed me that option.

    It took my GP’s call to the surgeon in order to push up my surgery date. However it didn’t end there, around 3 PM, the day before surgery, this very same person called informing me, she had canceled my surgery because my heart couldn’t withstand an excisional biopsy! I had to call 3 Drs, have them contact the surgeon to rectify that wrong.

    And last, but not least, another grouping you have past a blanket judgment on and demeaned is attorneys, which I take personally. I hope you never need one, especially if you ever experience any injury via an accident or, God forbid, botched up medical treatment. If you do, don’t ask one of us to help you. (Chances of you requiring legal assistance at some time in your life is very strong.)
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited August 2007
    Lady Jean,

    Please accept my apologies. I was simply reacting to the fact that many patients are not treated with equality and not given procedures and tests otherwise given to those who have connections, a large bank account, expensive insurance and, (this is not an insult, please!) and powerful attornies.

    Believe me, I have been through all you have mentioned and more. My mother had Inflammatory Breast Cancer, and with a visible red rashy "ring" around her breast, the doctor didn't have any idea what it could be. This was after she had a mammogram 3 weeks earlier, and no one detect it. To make matters worse, they screwed around for 4 months putting her through all types of humiliating tests. At long last, she finally saw a surgeon who took one look, had her prepped and in surgery the next day.

    My husband was in a serious car accident not long before I found the lump I'd had previously mammogrammed and not detected. I knew it was there; it was hiding, as dense breasts will, and the doctor I saw apparantly felt nothing; after I'd complained for years.

    My husband was driving home from school (teacher) when a 16 boy who was drag racing lost control of his mother's new car; after passing several other cars and running people off the road. He hit husbands car head-on/ t-bone, and his vehicle flew off into a field. His airbags opened, but he was not wearing a seatbelt, and had to be life-flighted to a city hospital where he was pronounced brain-dead. Meanwhile, my husband walked out of his car; he wanted to yell at the kid for being wreckless. The boy turned out to be someone my husband had as a student a few years earlier.
    He settled for having his medical bills covered, and his car replaced; which was rediculous since it's value was bluebook value; and he takes extremely good care of his car.
    The lawyer he talked to didn't help. The insurance company was a famous one with an expensive policy. We had a huge pile of "ambulence chasers" mail, in which he tossed in the trash. Point being, he could have sued for a lot of money had my husband been a greedy human being.

    The doctors he saw did not test him thoroughly, and frankly, he has not been the same since this car wreck in 05. He has things going on which I am personally worried about, but he settled, got a "used car" to replace his old "new car". I suppose we could take the doctors to court for not following up on this or that. I suppose since I was not dx. with triple negative cancer after a third mammogram and told I was b9, nuts, and being a hypochondriac because the pain was seriously horrid. It might be translated into malpractice, and I could file lawsuits for ever.

    To actually get a decent lawyer, one needs to be well=financed. During my treatment I had a gigantic hematoma, seroma under the armpit, was poked in nerves that no longer function, might add, my right hand is still swollen from an inexperienced nurse whom did not listen to me when I told her clearly it was in a bad place, something was wrong,and it's Adriamycin! There were nerves cut during surgery, a mystery broken rib, the nuke sentinal node injecting me told me, hey you have cancer anyway, so what if you get exposed to even more cancer causing chemicals.

    I am only telling you a little of the story; I think if the
    messy business of lawyers, doctors, insurance companies, and the equal rights to decent medical care in this country were given to all, then all might be getting great medical care instead of being all knotted and tied up in what I truly believe is a corrupt and "in need of repair" court system.

    Too many remarkable physicians quit, retire young, are bled by the legal malpractice insurance cost and the ease at which it is to take them (particularly if one is dishonest, and knows the in's and out's of the "system".

    I could write an encyclopedia regarding the bad medical care and the money hungry lawyers who take full advantage.

    I could write an even greater volume of wonderful medical professionals, physicians, researchers, and also one for the legal system, democracy, and the great respect I have and always will for an honest forthright attorney.

    These comments were not meant to slander or insult; just to make connection. People so often do not think about the mechanism behind the facade; is it running? Does it exist?

    Everyone wants to blame everyone else; it's like that little piece of glass stuck deep in your favorite pair of shoes; can't find it; can't see it, you know it's there...

    By the way, some of my best friends are lawyers; worked for some too. Some are nurses, doctors, and if you knew the list of diseases in my family and the struggles involving so many details, you would like understand my position regarding the once honest and now chaotic revolving door syndrome which offers "good care" to some patients and "garbage care" to those who can't pay for loved ones, lose entire estates, etc.

    What does it have to do with blood platlets and recurrance?

    Indi

    Truly sorry if I offended you in any way.

    Be well, be loved, it is a glorious day in time!
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited August 2007

    Sweet Jean,

    In fact, I was simply agreeing with your opinion regarding the unfair policies regarding healthcare in the USA. Implicating what I deem an unfair policy towards healthcare, certainly, is in the hands of politicians, lawyers, judges, congress, supreme court; they most likely have the best of the best, regarding insurance, medical protocol and the access to how and why the system works well for those who have economic status and not withstanding a liability or inability to pay for decent healthcare. Sometimes I think, heck, if one has no money or insurance, the big
    -wigs are likely thinking: "Die, who gives a ding or a dong, anyway?"

    Your comment struck me as one who cares. You are quoted as one who is annoyed by the "system" saying the following:

    Quote, by Lady Jean

    These prices are unbelievable. (There's a sign posted thanking s!) Go figure. They probably perform 8-10 PETS a day on EACH machine. Something really needs to be done about medical care and the cost thereof in this country




    My husband's background was political science. His way of thinking often confuses me. I am an "art" dufus, according to the typical conformist believing in a system of government and world politics which failed long before it began to control our minds, hearts, and personal exchange with living, peace, and harmony distorted in a theme off-key and out of tune.

    Indi
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Quote:

    Lady Jean,
    What does it have to do with blood platlets and recurrance?
    Indi




    You tell me, I was responing to your post about all the wonderful nurses and Doctors and the terrible lawyers. I too, was involved in a terrible auto accident. My 2 year-old daughter was killed by a drunk, unlicensed teenage boy. I could have sued his parents, taking away everything they owned including their home, but that would not have brought back my daughter nor made the kid pay for killing her. Also, many lawyers work for little or nothing.
    Please remember this is a site for helping each other thru a very emotional time, not to hurt others professions. (Personally I have never made a penny, and that unsets my dh)

    Side Note: I saw my new onc today and was informed that the reason I had been getting very bad treatment from my former Dr was, she didn't like working with HMOs. Evidently she treats all her HMO patients differently than the cash ones. He was very offended by her actions. (She has seen me 2 times since I started my chemo and I will be having tx #3 this Friday....nice lady, right? I may be very enemic, actually both WBC and RBC were very low, not that she cared.
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  • Indigoblue
    Indigoblue Member Posts: 274
    edited August 2007
    Lady Jean,

    Forgive my chemo-shrunken-brain syndrom, please. I love our legal system and hold great pride in our democracy and all it was designed to represent; we the people, freedom, and our right to speak our minds.

    Guess that's why I enjoy this site more than others, as there are some brilliant, intellectual minds who have given so much to the otherwise-uninformed patients who had/have no idea where it starts, how to proceed, how to read a biopsy, trusted sites and the latest research.

    The discussion boards have been great for me, in particular, because I have been so completely lost in both my personal life, and now the world of breast cancer (one which is so consfusing, not to mention how easy it is to be misdiagnosed, or worse, mis-read mammograms and undiagnosed)
    It's always a different opinion, a quest for what the "right or best possible treatment" is for what type of mutating cancer cells have been discovered. One day you think, this is great; a report comes to surface the next week, and it's bad news, then good, then unfounded or founded evidence always in the "cooker" of research: Yikes, I am beside myself as trusting any decisions I've made. Like yourself, I once thought we had safeguards in the medical practice/hospitals and that the procedures are researched to meet legal guidelines.

    I've always been a "chump", and very naive when it comes to trusting people. Now, very wary of lies, phonies, and frightful, gigantic egotistic people. I often think they have no idea what far-reaching waves of pain and rings of sadness they create when thoughtless routines and greed overshadow what should be a perfect system. Makes me so sad...

    Anyway, I have always enjoyed your posts, and you are a wonderful asset to this site.

    It broke my heart reading about your daughter, and all you must be going through with the breast cancer, hospitals, insurance, tests; I am feeling great sorrow and empathy for you and so many women suffering from this disease. I feel shattered, broken, and so often on the verge of tears or a nervous breakdown.

    It usually passes, I'm alright, and then it's "back to the doctor" week. The slippery slope of wondering, not knowing what is what, continues to haunt me day and night.

    You are right; there are deceitful, nasty, underpaid healthworkers who could not care less who we are or how painful our diagnosis and treatment might be.
    There are also overpaid creeps who treat human beings like a herd of sickly deer, or cows led to the slaughter. They do their "thing", get paid rediculous sums of cash for performing procedures which some later learn they hated doing in the first place. With luck, they retire early and leave the profession.

    Let's hope we find the "good" ones.

    Tomorrow I will see the new obgyn, go get a digital bilat mammo, and then see my oncologist; yikes...

    Will be sick just from doctor/hospital/crammo-itis!

    Let's hope all goes well for you, and thank you for your support.

    Be well, be loved, it's a lovely summer day!

    Indi

    ((hugs))
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    HI Indi
    I saw my new onc yesterday and was informed of my BRCA gene testing. It appears I have a gene variant that has only been found in 14 FAMILIES...Just great, one more thing besides being triple negative to worry about.

    Today I saw my Breast surgeon, he told me he'll remove 12-24 nodes when performing my bilateral mast but would personally have recommended only a partical mast followed with chemo and no radiation as he had clear margins on my previous surgery in July. He explained that rads make reconstrucion difficult and removal of the other breast would prevent reoccurance. However my Onc, wanted to remove only one breast,then TAC, folllowed by radiation of the entire left breast. Which not only means putting off my reconstruction but may also will require a possible additional surgery to relocate my pacemaker, unless my regualr surgeon can move it during the mast. He informed me he has never worked on someone with a pacemaker. Great, just GREAT.

    I wish I knew what was going to happen, all this is scarying the Heck out of me. The 3 Drs I have seen yesterday and today, (Onc, Surgeon, and PM Dr) all have differnent opinions of how this surgey should be completed and I have another appointment on Friday with my PS...I can hardly wait to see what his opinion will be. After seeing him, it's off to lunch then my last TC Tx prior to the surgery.
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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited August 2007
    Well, I for one am glad that y'all kissed and made up and I'm sure I'm not alone!! : )

    Next time you talk to your docs will you ask them about how they will test you for recurrance when you are all done with your treatment??
    : ) Hugs, Traci
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