TRIPLE POSITIVE GROUP
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Well, today's onc is not going to work. First, he doesn't seem particularly intelligent. For someone with a specialty in breast cancer, I asked him what percentage of his patients are bc related and he said "a lot." Then, I asked him about followup scans, etc. He doesn't do them, which I wasn't stunned to hear, won't do the ca 27-29 blood test, but then went on to say he wouldn't order any blood tests at all at followup visits. I could leave that to my PCP. Um...ok, why bother seeing him then.
Finally, I asked him what type of continuing education he did to keep up to date with current treatments. He mentioned going to the ASCO conference and their weekly tumor boards. I generally asked him about his familiarity of the vaccine trials. He said, "yes, I know there are some out there, but not much about them." Had never heard of any of the ones I mentioned, and since they had a big release of info at the ASCO conference this year, that was kind of the final straw. My former onc didn't know everything about them, but he was pretty informed. He is off the list.
I have six months to find a new one. I did learn that I have one tiny area that is osteopenic however, so I'm going to get the prolia shot.
Kthielen-count me as one of the ones with vaginal atrophy. It hurts like crazy in the beginning, and occassionally have some bleeding. There is still interest, although the drive isn't as strong. I was not at all menopausal before before this, so this is a dramatic change between then and now. I hate it. Im trying all the stuff and it helps, but hasnt erased the pain.
Kathie-same reaction at SpecialK. I think the reaction is actually due to the GSM immune booster they give us and not the actual stuff. That is what everyone is so excited about, as if this works, it can be very beneficial with little effect.
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Fluffqueen my MO doesn't believe in scans unless there are symptoms (for early stage) nor does she do tumor markers. She's the one that worked with Dr. Slamon in the 90's trails of herceptin (and is written about in the book Making of Hercepetin). She really is a good MO and very smart. But I understand that is important for you. BTW a few years ago I asked her about the vaccine and she said "very promising but not ready for prime time yet).
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My MO does not do routine scans either. I'm ok with that right now because honestly, if something else is brewing I couldn't bear to hear it right now. Perhaps next year I'll feel different and want a scan, then I'd have to seek out a different MO.
For dryness, my gyno recommeded vitimin E oil or coconut oil applied topically. MO approved of either treatment, but I haven't started yet so don't know if they work.
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There is also the thread Yippee! That one has the formula for the unfortunately named "Scream Cream" which has helped a lot of women. It also has lots of helpful comments.
My MO doesn't do scans or markers either. But I've never been to an apt with him where I don't have a full CMP and CBC. I also still am tested for magnesium every month yet. I see him every 3 months.
Fluff, let us know what day you're gonna be on the Chew! I tape it daily. LOL. It sounds like you had a great time.
Much love to all.
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Lago-I figured my luck had run out on the scans. I won't have that relationship again. I did like the tumor marker bloodwork, even though I know it isn't reliable and they don't know exactly what to do with it, but it gives me a little sense of security. On the vaccines, I at least expected him to have a solid awareness of what was going on, especially since he supposedly has a breast cancer specialty. You are right, def not prime time, but should be on the radar/awareness screen of a reputable breast cancer oncologist, in my opinion.
Don't your oncs do bloodwork when you see them however? That was standard with mine. I had the bloodwork a couple days before the appointment, and then the appointment. He did liver counts, red and white cell stuff, albumin, etc.
Debiann-I've tried these and they are good moisturizers. I tried making suppository things from coconut oil and then freezing it, but that is messier than it is worth. It moisturizers well, but doesn't help the pain much.
Carlson Key-e Suppositories, 24-Pack
One of the nurses recommended a Clary sage oil product called Clarycalm. All sounded great until I looked it up and it is an estrogen mimicking essential oil, so I'm guessing I need to stay away from that.
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I was on the chew on October 7. It was Farm to Table day and the introduction of Mario Batali's new book. If you go,back and watch it, my daughter is in a red blouse and gets to play a trivia game with he and Clinton, you barely see me behind a table person, and my husband is featured front and center in a bright orange sweater for an entire segment, lol
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I'll have to see if I can find it! Cool!
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Am new here (my first post) and am also triple positive. I was told all about the Herceptin for the year for us HER2 positive gals, but guess what? After only 4 doses of it, my MUGA//echocardiogram came back that I only have 40% ejection fraction rate! So, as of August 9th I've been cut off treatments and been to so many scans etc, bloodwork, you name it, I got... and still now (Oct. 27) cardiologist wants to do another scan since she put me on heart meds 3 weeks ago. IFFFFF my ejection rate is up to 50% she will contact the oncologist to "challenge" the Herceptin treatment (1/2 dose to start) with repeat MUGA 3 days after and see what happens. Am really nervous about 2 things............. 1) haven't received much Herceptin to really make any difference in me 2) what if my heart isn't back to normal and this is permanent or gets worse. OF course the biggest worry is that the cancer will show up again and always so scared! For those that it came back what was the time frame from first diagnosis to recurrence? Thanks for any help you can offer.
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Mouser ... I am a newbie too (first TCH was 2 weeks ago). What my MO had told me was that any EF changes were almost always transitory. Are you into the Herceptin-only phase of your Tx's, or? I hope that the situation gets sorted out soon ...
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Fluff the only blood work that was done after chemo was to check my esterdoil levels. Even while doing just Herceptin I didn't have blood work done. I'm sure it was assumed my PCP would do that.
Mouser like armamp said most people do recover from the lowered ejection fraction rate. I know that statistics I was given if I did treatment looked pretty good…and they didn't even figure in Herceptin. You may not need it.
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Lago-I guess if nothing is being done except cruising in to a fifteen minute appt where they ask me how I'm doing, I'm not sure what the point of being followed by an oncologist is. There is nothing for them to evaluate. I can get that from my PCP and bloodwork and save $50 bucks. If I am going to find a new oncologist, there needs to be something they are doing to justify following me. If I get the same answer from everyone I interview, I just don't see any sense in starting with someone new.
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oh and you mentioned estradiol bloodwork. I asked him about that since I switched over to Arimidex roughly six months ago. His answer was he saw no reason, that my ob/gyn could order that bloodwork.
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Fluffqueen, of couse there's a reason for them to see you, they get to bill you! I just had my bmx and recon surgery. The first day home from the hospital, my familly dr's office called wanting to know how I was doing and if I understood my discharge instructions. How sweet and caring I thought, till she said "Doctor would like to see you to make sure you understand your meds, when can you come in?" What?????
I said, "I'm taking ibuprofen for pain and an antibiotic, I think I can handle it." I believe they were trying to drum up some business, lol.
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fluff, I just went to my MO for a 6 month check up a couple weeks ago. He did no blood work and didn't want any scans. He did put in a standing order for blood work every 6 months, but said do it when I do other blood work for PCP or GYN. I had my estradiol checked in July by my GYN, she also checked my A1c and a bunch of other stuff that the MO doesn't check. I was a little frustrated with my MO because the nurse asks about all kinds of things like pain, sleep, joint issues, headaches, etc. But then the MO doesn't address any of it. We did discuss my depression issues on Aromasin and Arimidex, but not much else.
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Fluff I see my NP first. She asks all kinds of questions. I am also required to fill out a questionnaire that cover all SE including things like depression and issues paying for treatment. I do get a physical "breast" exam. I can ask all the questions I want. My MO comes in after to discuss any issues I might have. This time I had none… and she still came in to say hello. I also found out I can get my Prolia shots through them so I will be doing that now. Bloodwork for Prolia (checking calcium) then see the NP/MD, then get the shot. I just cut out the cost of my Rheumatologist. My MO will send me back to the Rheumatologist if the Prolia is not working.
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Do your MOs not do blood work because you are x years from diagnosis? Were they done for a certain time after? I've never had a PCP, only a gyn. I'm not sure why I'd need to see my MO after the first couple of years (if no blood work). My gyn can do breast exams. Are all of you seeing a PCP regularly because of your age? Are their certain things that need to be checked regularly after a certain age? I've always been very healthy so I never had a reason to see one. Should I have been? I'm assuming I will now!?! Will she need to check things like blood pressure, cholesterol, bone health, etc because of the hormone therapy?
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Things work a little differently here in Australia. I now see the onc every twelve months. But for the past few years it's been every six months. For each appointment I have to do a blood test, and every twelve months have an u/s and mammo on my remaining breast.
This time before I see him I also have to have a bone density scan done. When I see him we talk about any ses and he does a breast exam, also checking my scar and under my arms and along my collar bone and neck area.
All this is covered by our health care system, so I don't have to pay anything.
If I have any problems in between I can see my GP (General Practitioner) who can order scans and tests and if anything sinister comes up then I'd go back to the onc early.
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Mommato3 I've always been healthy with virtually no medical issues…till diagnosis. Still considered in excellent health. My MO only did blood work to see if I was healthy enough for chemo. Then it stopped except to see if I stayed in menopause because she started me on AI instead of Tamoxifen.
1st year I saw my MO 2x a year and my BS 2x (saw someone every 3 months)
2-5 years I was supposed to see MO 1X and BS 1X but I changed it to MO 2X a year.
6-10 years will be MO once a year.I do see a primary care annually. This is where I get my basic blood work, flu shot and my go to MD if anything goes wrong.
I see my gyno annually for exam and pap. He also does an exam of my boobie prizes and this last time actually did an US of my uteris right in the examining room.
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Lago, I never went back to my BS because we moved out of state. Should I get a new one or would my MO see me the extra two times the first year? I wouldn't pay anything to see a PCP as long as it's a well visit. I can ask her what type of blood work she would do. I haven't had a flu shot in years so I can't decide if maybe I should start getting one again. I will continue to see a gyn every year for an exam/pap. And of course a mammo!
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hmmm, hearing all this, I am tempted not to bother with the oncologist. Seems a huge waste of time. I can go back to my BS if I want a manual exam, and honestly would feel a lot more confident about the one she does than the one an oncologist does. I knew I had a really great doc, but this drives home just how great he was.
I am going to interview a couple more and if they all say they don't order any bloodwork, I may just move my AI over to my PCP. I can tell my side effects to him and get the same response and treatment for side effects.
I will get my Prolia injection in the oncologist's office next week, but am pretty sure I could get it in my PCP's office. I'll have to check.
I see my PCP annually and they routinely do the normal blood workup, cholesterol, iron, etc. I don't see him until next May, so I had asked this onc if he would include it, only to see if Arimidex was affecting it. I hadn't fasted so I think he would have done it since he was running a calcium check, but I hadn't thought that far ahead.
I see my ob/gyn annually but he typically uses the bloodtests from my PCP. I would be ok if the MO used that, but my past onc tested lots of other stuff like liver counts, kidney, etc.
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Just remember if you don't see your onc your PCP might not be up on the latest and greatest regarding breast cancer treatment for you. PCP is a generalist. My PCP does liver, kidney etc.
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I know. sigh. I just hate doing this. Based on the last guy, I think I was more up to date on the latest and greatest. I am going to check out Pbrain's guy, and my PS texted me today a person that some of his patients love connected to IU Health.
Momma-after the first year, I didn't see my BS either anymore. I have seen her twice to check a couple lumps I found, but only because she has the ultrasound machine right there and does that and then sees you all at once. The PS and onc always suggested that first for that reason. She always did a thorough manual exam while I was there also. I think if I had just done the lumpectomy, I would see her more often for mammos and/or mri related things
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God, I just saw all my doctors waaay too much, it was exhausting! i did have blood tests every infusion, and all herceptins too. And I still saw my onc, or his np every time. Last time he told me six months. I guess I had lots of issues. And I saw BS frequently, too, issues with lumps, biopsies, etc. I do like my team, I do believe they are all smart and dedicated, they are just unwilling to spend too much time with me, or, answer too many questions. That was why I was so impressed with your onc who passed, Fluff, I think we ALL deserve ones like that! so now i am beginning to think i must be obnoxious to them. yeah, it must be me! heh.
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Not that this is anything new but check this out:
Study Shows Herceptin Offers Long-Lasting Benefits for Early-Stage, HER2-Positive Disease
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I feel like Herceptin was a magic bullet for me
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I see my MO every six months, but saw him every three months for the first year after treatment. I get blood work every time - CBC, CMP, Vit D, CA 27/29, CEA, and a physical exam. I also had a pre-chemo PET scan, a post-chemo PET, and one a year later. I am having hip pain so I am going to ask for one when I see him in December. I had a bone density (DEXA) done the same day as my last mammo/ultrasound, so I had a good baseline for bone health. I had another done six months after starting on an AI and when I had significant impact from chemo/AI I started receiving Prolia from my MO every six months. My MO ordered another one after the fourth Prolia. I had my last PAP right before exchange and the NP said I did not need any more of them because I had a complete hyst/ooph (no uterus, no ovaries, no cervix) and I had never had an abnormal PAP. With being on an AI she was more afraid of hurting me with the exam than she was about my need for future PAPs, so she cut me loose - so I no longer see a Gyn doc. I am treated for routine health concerns at the military base and they don't really do annual physicals - you go if you have a problem. They have never ordered routine blood work, only blood work that pertains to the problem at hand. I had been seen somewhat regularly (annually) to renew my prescription for Lipitor for cholesterol but I asked to stop taking it since it can cause muscle and joint pain, and high blood sugar - so I weaned off and have kept my cholesterol low enough to stay off through diet and exercise. I no longer see my BS - I decided to stop because the last time I just saw his resident, and if I have a problem I will make an appointment at that point.
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I forgot to mention that my MO/NP order my dexta scan because I am on AI. I personally like the fact that they are monitoring my SE while I am on the AI. Once I was diagnosed with osteoperosis they did send me to the Reumatologist (specialist) for the issue but just to be sure there isn't something else that needs to be addressed.
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I will go for my 3rd Dexa at the end of November. My last one was right after chemo and show my rate of bone loss was doubled. Now it's two years after I started Arimidex. Gonna be interesting. Because I take Omeprozole as well as the AI, I'm not expecting to have it be better. I was on the edge of osteoporosis. I expect to be osteoporotic at this one coming up. Especially since I've had so much trouble keeping up my magnesium level. But I've always been pessimistic! But who knows, I might have magically improved. LOL hey, it COULD happen! LOL
I will email my PCP and ask if he wants any tests done before my next MO appt. I'm due for a PCP appt.next month too. And this way I won't get poked too much. LOL
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SpecialK-I had a bone scan today for hip pain I have been having. My temporary onc did order one of those right away when I mentioned it was enough that it woke me up at night when I rolled over. I'm hoping it is just due to wearing a boot for 8 weeks after foot surgery, throwing off my gait or something. After the scan though, he asked me a bunch of questions and then made me stay while they got an order for a couple plain hip X-rays. That was a little disconcerting. I tried to pump the tech for info a little but didn't get far. He did say the doc ordered them so I wouldn't have to come back if they needed more.
I started back on The lowest dose of Cymbalta two weeks ago. I took it when first diagnosed and through chemo, but got off when I started tamoxifen due to interaction. I can't begin to tell you how much it has helped the joint pain I was having from Arimidex, it's huge. Hip feels better too, and I almost didn't mention it to the onc. Feet still hurt when I first start walking or barefoot, but I try to wear something. And my mood is better, so as far as I'm concerned, it's a win/win.
Prolia on Monday.
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Fluff good luck with the Prolia. I had no issues with it.
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