TRIPLE POSITIVE GROUP
Comments
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Dance,
In answer to your osteopenia question question.... My T scores ranged from -0.7 to -1.60 -
ashla - I can't recall the post from earlier - with those scores (similar to mine), did your onc/gyn recommend calcium? To have -1.4 at only 44 concerns me, but my gyn didn't seem concerned at all.
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EveBarry: I had all of the same symptoms you describe and it was so bad after Chemo/Herceptin #1 that I was in the ER twice for it. Even though my EF is up to 65, I still get the heart palpitations.
KayB: I get the tumor markers also. Both are normal...whatever that means. lol
I don't thinkk my eyes will ever return to normal.
Slowly, though, all this 'crap' is working out of our systems.
I need to find out what my T score on my dexa is. I'd LOVE to NOT take the bone building drug.
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Calcium was recommended as well as weight bearing exercise (already doing that) with my first score by my onc. I would discuss this with yours.
Hip score oct 2010: -.8
Hip score Aug 2011: -1.2Granted my hip is doing better than my spine or neck. My spine (1-L4) dropped from-1.6 to -2.3
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Thanks Lago. How much calcium are you taking as a supplement?
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I did already discuss it with my onc Lago. He was more concerned than my gyn, but didn't disagree with her on just taking 500 mg in my daily multivitamin and trying to get the rest from diet. Both expressed concerns on the heart issue with calcium. I'm going to discuss it with him again, b/c it seems like others are told to take more with the same score. There is a local osteoporosis clinic here...may look into getting a referral to them to be sure I am doing the right thing. I'm concerned to be low esp. at my age, with extensive WB exercise already, and was premenopausal up until chemo just a month ago.
My hips were the -1.4, spine was fine.
So your doc recommends yearly testing?
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1200 with D but my multivitamin also has 200. My onc said 1200. Be sure to check with your PCP or onc. We might have different health issues. I have read too much calcium isn't good for your heart.
"The government recommends that adults take 1000 mg a day of calcium and women over 50 take 1200. But it says no one over 50 should be taking more than 2000 mg a day." quick linky source but I have read this in other places too.
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T-score at time of dx (Sept. 2010) was -1.2 for femur, -0.6 for lumbar spine. For the scan done 18 months later (Jan. 2012, after conclusion of chemo/Herceptin and 6 months of Femara) was -1.4 for femur and -.07 for lumbar spine. I am taking 1350mg of calcium and 4500iu of Vit. D, and a Prolia injection every six months. My Vit D was 16 after treatment, and last time it was tested (Jan. 2012) was 34. I had tried both Actonel and Boniva (oral bisphosphanates) prior to BC dx and couldn't tolerate them due to previous GERD surgery in '95, so the injection is easier for me and I have not had any SE from it at all.
Here is a link for the FRAX calculation tool: http://www.shef.ac.uk/FRAX/tool.jsp?country=9 When I calculated my risk for fracture I did come up high enough that it justified the Prolia for me.
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Thanks again Lago. Will definitely ask as I do know about the heart risk.
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Each of us has reasons for choosing the way we deal with the many choices involved in treatment, and I'm glad to see the thread focused on providing genuine support for each person's individual choice, regardless of what it might be.
Choosing one treatment or another is a very individual thing and what is wise for those who have better living circumstances to begin with or for those who do not have other health conditions to take into consideration can be a non-starter for those who have more difficult living circumstances and/or problematic other health conditions to consider. I'm glad this is a thread that doesn't pass judgement, or idealistically minimize the reasons for the choices we each make.
One example is the woman who is self-employed and sole worker for her business. She has no way to pay anyone to take her place when she has to "take time off" for surgery or any of the multiple appointments for treatment, and not many people who contract for her work will drop the company who steps in and then be waiting for her to come back to work when she is done. There are all kinds of reasons why people are genuinely unable to do the long course of chemotherapy and trastuzumab, so l'm glad we are willing to give each other credit for doing the best each of us can in our individual situation.
Things like bone density levels are going to be different. I don't like knowing that it is largely unavoidable for bone density to drop as we age now that I am meandering my way down the far side of The Hill myself. I spent many years working at a job that built bone density in the first place, and got to age 50 in great shape physically. Chemo does shoot holes in a nice bone density when one does it at age 50, since it starts to decline around age 35 anyway. We can supplement and exercise, but bone density stil is going to decline with aging. My point there is that comparing our bone densities without taking each person's age into account is not as relevant, given there is only one thing we can do about aging....
The CTC test was never in standard use for early stage bc and is not commonly used for it across that population. Once something is being done as the standard practice then doctors end up pretty much having to do it, and I think the reasoning behind it not being done commonly may be because it wasn't providing clear information for that group on a consistent basis. I think doctors don't want it or markers to be something that is mandatory as part of "standard practice".
Perhaps doing markers is less expensive, since they aren't recommended either for early stage bc but more doctors do order them. Both the onc I had and the PCP who managed my direct care ordered them for me, and I suspect they don't order them routinely either, but instead order them just for the bc patients who are considered at higher risk, such as HER2+ or triple negative.
Not a lot is yet designated as standard of care for those who get past 5 years. For example, I had Adriamycin but not trastuzumab and each of them can damage the heart. I had random echoes done, but I'm quite curious to know what would be considered "average" for someone who did Adriamycin but not trastuzumab as part of treatment and who is now 10 years out. My last one was in 2006 as part of preparing for a clinical trial, and it was at the lower limit of normal. It too would vary I think depending upon the age at time of treatment. I'll be asking for one, since I want a baseline of sorts to go by from now on in case I start having problems with my heart.
As more time goes by, because of the relatively recent availability of trastuzumab for HER2's, there will be more HER2's reaching many years out from treatment. For now there are not many who have made it as far as I have so there are few landmarks for me to go by.
A.A.
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Kayb my eye didn't turn red, it was like a vein in my eye turned red. It would eventually go away. When this happened about 1 month PFC again my onc sent me to my ophthalmologist. I never had another one after that tough.
A good onc should be keeping up with the latest information. In order to keep their certification all doctors must re-certify every 10 years. My onc I believe is in her early 60's and is currently part of the TM-1 trials. That doesn't sound like status quo. That's why it's important to find the right onc. There are bad and lazy MDs everywhere but most of us have choices.
The choice to have treatment or not is ours but we do not have the education or experience to prescribe what that treatment is. We can suggest from what we may have learned to our MDs. The good ones will listen and if they don't agree will explain why.
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bcbarbie10,
This is my best guess as to the answer to your question (so you would need to check with your provider for definite info on it).
Normal WBC is in the 4500-10,000 range in general. 20% of 4500 would be around 1125, so below 1100 or so MAY be the trigger. I think my PCP used 1000 for the 20% for me. I refused the blood support for the very reasons that they don't want to give it unless they have to. As a result, the time to recover for me between each of my 6 treatments was 3 weeks instead of 2, which extended the total length of my treatment period considerably.
A.A.
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In addition to what lago said above, most state medical licensing boards have a Continuing Medical Education requirement which is mandatory for docs to be licensed. In our blood bank the techs had annual CME requirements to be licensed by the state. If your docs have fellowship in the corresponding organization of their specialty, like FACS (Fellowship of the American College of Surgeons) for breast surgeons, or ASPS (American Society of Plastic Surgeons) for plastic surgeons, or ASCO (American Society of Clinical Oncologists) for oncs, it also means that the doc has met the criteria for acceptance such as CME, ethics, training, competence, etc. and is more likely to be versed in new research info. Not all docs have membership in these organizations and ones that don't are not as well respected by their peers.0
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Point of clarity...yes, getting dizzy from herceptin related heart damage sucks. But being dead sucks worse.
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SpecialK,
Yes -- both my PCP and my onc have maintained their individual qualifications for decades, along with additional continuing qualifications. Both my onc and my PCP were and are considered by their colleagues to be the best of the best.
Yet neither of them provided answers to the very logical and pertinent questions I asked at time of diagnosis, or ever told me I was HER2 positive. The only way I found out was by asking for my medical record, long after I completed treatment.
I'm saying that as a warning to others that if the qualifications are solid but you still aren't getting answers to questions that make sense to you, don't just assume you aren't smart enough to ask the "right" questions, like I did at the time. I unfortunately was raised to believe strongly in favor of trained medical professionalism and courtesy, and that trust was not supported by my providers even though they had a great reputation and high qualifications.
I was very fortunate in my choice of surgeon, who spent whatever time I needed answering my very logical and pertinent questions about his area of expertise.
A.A.
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I think there are people who do what their Dr. says regardless of side effects, risks etc. They put that trust in their Dr. or Drs. I have never felt that confidence in a Dr. whether it was an O.B. a G.P. a Surgeon....a Pediatrician. I always go home from appts with my kids and look up the diagnosis and treatment a Dr. prescribes. My daughter has lyme disease and was misdiagnosed for too long by supposed big wig medical professionals. It would be nice to be able to just go with whatever a Dr. says to do, but my frame of reference won't allow me to do that. I will say that the surgeon doing my upcoming BMX has a very calming, empathetic bedside manner. She also has a great reputation for quality work which is comforting. She is also not judging me for my decision to forego chemo and herceptin. Of course, she may think I will change my mind later, and she is handling me with kid gloves for now. Who knows. Anyway, there is something to be said for being the patient who does what their doctor says, no questions asked. I doubt I will ever get there.
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AA - It is critically important to advocate for oneself in this journey and one of the ways I feel that I have done so is to obtain every scrap of paper pertaining to my treatment. I literally have a binder that is 5 inches tall with every lab report, path report, surgical report, imaging report, you name it. The information contained in those reports is invaluable and I have referred back to it many times. I firmly believe in second opinions and researching your doc's reputation - especially from other patients or resources that help you determine their accessability and communication style, but of course that can't always prevent exactly what happened to you. Do you feel that the Her2+ info was left off the table because of the lack of Herceptin use for early stagers at that time? If you had known about it how do you think it would have changed your treatment?
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Gee, thanks! That made me lol. I'm with ya!
Bone density. I have had 2 DEXA scans. My "lowest" number is on the femoral neck (which is located on the HIP not the actual neck that holds up my head which is what I thought and actually SAID out loud
....DUH ... sure my Onc got a GOOD laugh out of that one.) Anyway that was .2 from being osteopenia. When I asked about what to do when I switch to an AI....My Onc told me to keep exercising and take calcium/D3 supplements.....that the research isn't clear (ie contradictory) if treating osteopenia is necessary or even works. He said many women are osteopenic their entire lives and it never really deviates. The drugs designed to help have myriad SE and he doesn't prescribe them because they aren't proven beneficial for osteopenia and not worth the SE. (I haven't researched this, its just what he told me.)
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nancedawg,
It is not easy. The first surgeon I had put me through 3 sets of mammo/ultrasounds 3 months apart, each one BIRADs 4. It still seems really weird to me that someone who graduated from a reputable medical school and has had at least 5 or 6 years of experience and is qualified could be that sloppy. (She was on vacation in Europe for the 3rd one and failed to even order the third set, so I had to order it myself.) The only "excuse" I have for the failure of my PCP and my onc is.... (sorry guys)... that they are male and they use that as an excuse for not being more responsive. But jeez.... all of my doctors have adult daughters they are close to.... I'm not sure what THAT adds up to in the equation. My surgeon, who also has grown daughters, was very straight about maintaining clear communication, and still is. Really good ones ARE out there.
A.A.
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I do think there is something of a generation gap when it comes to how much we question our Docs. I go to two groups...one is for women younger than 50, from 18 to 50 basically...(though we don't have any teens thank goodness!) and a group that is from the hospital where I was treated. In the second group, besides me, the youngest is 63.
Not a single one of the older ladies can tell me the name of their chemo (and some are retired nurses!). They don't have a single copy of their records either. When I was going back and forth with the surgeon trying to get him to leave my axilla alone, they considered it fairly rude and arrogant of me to make that decision. They were too gracious to say so, but I could tell.
My point is, that generation didn't have Google. Research we take for granted now, and can do in little time, once took hours, DAYS in a medical library reading through medical journals. We also have more information about bad docs these days with technology, so we know they are out there and have a "buyer beware" attitude.
The older women in my family with cancer. Exact same way as the older women's group I go to. They don't question their Drs, just do as they're told. And they don't like to complain either. So they will suffer rather than inconvenience the Doc with their issues.
I have an aunt who had benign microcalcifications. That's it. They recommended a radical MX and full axilla dissection. She did it. No second opinion either. She "trusted" the doc and BAM! SEVENTEEN NODES GONE. She had LE before she left the hospital. No chemo. No rads.
I don't have to tell you that they think I'm a total wimp for talking to my Onc about SEs.
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Tonlee my onc doesn't treat osteopenia either. Once the reports came out that the drug didn't prevent bone mets she told me from now on my PCP will be handling this issue. I have also read that us small framed women are told they are osteopenic when they really aren't. The testing might not be as accurate on women with smaller bones.
First thing my onc said to me was "tell me your story." Then she asked me what my concerns were. (I said my heart and my bones and gave told her of my mom having osteoporosis). She came back with my treatment plan. Then asked me if I had any questions. From my research I knew I wanted TCH/Anastrozole. The AI was not typical since I was only peri-meno but my onc came to the same conclusion I did bases on family history. My period wasn't coming back (granted she monitored). She also sent me for a bone density test before chemo. So my onc and I were on the same page before I even met her.
I will say it again. If your doctor isn't listening, letting you ask questions or giving you reasonable answers to those questions it's your responsibility to find a new one. There are many good doctors out there… get one.
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SpecialK,
At the time, the better oncs were testing for HER2 because the trials were in progress and looking somewhat favorable. The surgeon gave me my initial surgery and test results, which did not include the HER2 status because that test took more time to be completed. No one at that time discussed HER2 with me at all, and I didn't even know it existed. My surgeon then handed me on to the onc in the belief that the onc would give me the HER2 results. The onc sat like an idiot and used the information for himself in order for him to select a recommended treatment, but provided no information to me about any of the test results so that I could make a solid choice for treatment based on knowledge.
I went to a presentation about breast cancer that he gave to nursing and other medical providers as well as cancer patients a few years later. Once again he covered the mechanics of cancer and glossed over or ignored most of the information that are very pertinent for those care providers he was teaching as well as the patients who were there.
With me, he also failed completely to distinguish any of the common ramifications of chemotherapy as they impact sexuality. He said merely that I would "probably go through menopause". Why would he bother? It meant nothing to him. I naturally thought he meant the same thing as my mother and older sister had experienced, with active sex lives for many years after going through it. The ONLY difference between me and them was that I did chemotherapy and tamoxifen for my breast cancer and they didn't do it for theirs. (My older sister did chemotherapy when she had IBC 12 years after having had IDC. For her IDC she did just 2 weeks of tamoxifen.)
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lago,
I agree wholeheartedly.
However.... I wonder what your impression is of this:
Last year I went to the session for newbies presented by a nurse at the huge metropolitan cancer center where my onc practices. I made sure I was verbally supportive in general about treatments, given that newbies are nervous about it all. I then mildly raised the question about the impact on sexuality. The nurse indicated there are no impacts on sexuality, and that I was an "exception". She suggested counseling. I sought counseling at the cancer center and was told that counseling is "not available to those who are more than 2 years out from treatment".
A.A.
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AA,
When you say impact on sexuality, are you referring to a decreased libido? Vaginal atrophy? Could you please elaborate?
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Tonlee, there are people like that today, and that is fine, and actually probably better. What they don't know won't hurt them, right? I sometimes feel I know too much from all the research I have done.
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kayb,
That is helpful. My cancer center is affiliated with an NCI center in the same city, but apparently that affiliation conveys some authority patients would believe is worthy, without taking actual responsibility. I'm glad to hear that there are some limited places where that is offered, though.
TonLee
Decreased libido, vaginal atrophy, loss of previously strong sense of female gender, how to cope with a 30-year marriage to a dedicated spouse who has a normal male sense of gender and active sexual desires, watching movies with sensuality in them and feeling completely lost in the sexual shuffle, how to handle male or female colleagues who have no clue what being genderless is like, having no recognition by society that it even can happen, denial of the actuality of it consistently by the medical profession.....who administers the dosage of hormonal support and smashes it to bits without warning "to provide longevity".....
I saw my onc and my PCP multiple times about these questions AFTER completing treatment. I have the office notes from those visits. There is not a single note about any of these issues or to indicate that I raised those questions for discussion.
I saw my NP (who was added about 4 years ago). My questions ARE discussed in HER notes as a competent and caring medical provider.
My point in raising all of this is that there are a multitude of us trying to go to the "right" places for information, but it is idealistic to expect the many OTHER people who get the results I got to believe that medical providers are any more accurate about crucial questions regarding the "best" treatment than they are about the results of the treatment.
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AA - I had all those same symptoms from surgically induced menopause, chemo added or subtracted nothing.
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SpecialK, to answer your other question...
If I had known...
I specifically asked my onc in advance whether in my case (with a past hysterectomy but not a bilateral salpingo-oophorectomy) doing ovarian ablation plus tamoxifen was considered equal to doing CAFx6 plus tamoxifen. He said no. This was a year after it was well-known among oncs treating breast cancer patients that a European trial had demonstrated that indeed it was equal. I did not know about that trial, or about trastuzumab, which could have been added to that since I was HER2+.
I would have most definitely had ovarian ablation plus trastuzumab and if necessary , tamoxifen. The sexual effects would have been similar or the same, and that should have been discussed. As a stage 1, I would still have chosen NOT to do any chemotherapy whatsoever.
A.A.
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As I understand it, there is a trial in progress that compares ovarian ablation (plus trastuzumab for those who are HER2 positive) to more current chemotherapies. It has been in progress for quite a long time. Some here have indicated that perhaps accrual is slow because patients are worried about not doing enough to handle the cancer.
As much as I would like to accept that as a reason, with the overwhelming lack of support and especially acknowledgement of the medical profession for the very real problems and concerns involving treatment with toxic drugs, I can certainly see where enrollment in such a trial is actively discouraged by the medical profession under the pretense that they know best.
A.A.
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Well my T score after Chemo prior to Arimidex (aged 40 in chemo pause for 6 months)
Hip -2.10 spine - 1.9 Onc decided to push ahead with AI and to take vid and calcium, my vit D was ok to start with (high normal).
After a yr of Arimidex hip -2.6. Spine - 2.3 - ceased Arimidex started on zometa x 6 monthly - had a course of 4 now finished with zometa.
Next Dexa scan after 2 zometa showed no change, but no further loss was good.
I am small framed but do a lot of exercise and have never smoked, I feel my BMD was so low as I was a very skinny teenager and had minimal diary intake.
I was bit freaked out initially, but quite relaxed about it all now, I continue to do WB exercise, take vit d3 and eat lots of diary. I'm now having reg periods so hoping my BMD improves when I have my next Dexa.0
