Stage 2 Sisters Club
Comments
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I can also attest to thinning hair and a rise in cholesterol that I (and my onco) blame on femara. All the cholesterol numbers went up - total, LDL, triglycerides and even the good HDL. But still hovering at the ok for now range.
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I even gained weight. Going to the cadiologist today to talk about cholesterol. Don't want meds. Want to try diet and exercise first. It was only 4 points above normal ldl.
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I met with an oncologist for the first time yesterday after having surgery a month ago. I left feeling a little uneasy and was wondering if his approach to my treatment is typical. First, he was reluctant to order the Oncotype test. He said that my pathology was favorable for treating with endocrine therapy alone, which I agreed with, but I wanted the Oncotype to confirm.
He then gave me the choice of Tamoxifen or AI (I'm postmenopausal) and did not make any strong recommendation for either. Based on my reading, I chose AI because it seems to work better for ILC.
What really bothered me though, was that he did not order any kind of blood work and was not going to monitor bone health, cholesterol, Vit D levels, estrogen levels, or any of the other things that might be affected by taking AIs. When I asked about them, he said that that was up to my PCP. Is this normal? In addition to the tests I mentioned above, what other things should I bring up with my PCP? I just expected that I would be monitored pretty carefully by the oncologist over the first couple of years at least, and it bothers me that he seems to be so relaxed.0 -
Grandma3X, Although I felt comfortable with my oncologist who I was lucky enough to meet with even before my BMX, I went for a second Onc opinion. Both oncologists said the exact same things to me so I really felt confident in my treatment.
It is very important for you to feel comfortable and confident with your doctor.
Good luck
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I did (and do) all my monitoring, except tumor markers (and blood work, they both still order those for the respective checkups), through my GP. Oncologists are mostly going to focus on cancer, it's your GP the should be able to help you balance your overall health. My GP is the one with whom I monitor cholesterol, the one who orders DEXAs (and now that my mammograms are back to once a year, he orders them too), vitamin D tests etc. etc. If they are wacky, then I would bring them to my oncologists attention (or my GP would). Since I did chemo, it was my GP who reminded me of the importance of flu shots, had me get a pneumonia shot early & also a shingles shot. None of which were every suggested by my oncologist.
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So far my MO has been ordering blood work prior to each appointment. I am seeing him every 4 months right now. It will change to 6 months after a year I think. I still see my BS every 4 months but I have more surgeries coming up and she WANTS to monitor me since I have a genetic mutation that increases my risk of a new cancer. If you don't feel taken care of by your MO then seek a second opinion. I did and felt better about mine after that.
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At my first visit MO told me to consider him my PCP as long as I am in active treatment...he monitors blood, Vitamin D, all of that. Right now, we are in the stage of still figuring out how I do on AIs but it isn't clear to me when and how that will change when I am not seeing him as frequently as I did during and post-chemo and rads...Since he is located in a town sixty miles from home and PCP is just a mile or so from my house, it would be nice to switch back at some point but I don't think that 'some point' is just yet. I do agree that the most important factor is that we need to feel that we are getting the care we need, which for me means it is less about who does what but totally about whether the care is coordinated and complete. I like the idea of MO as a central hub for now.
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Thanks, everyone! I recorded my conversation with the MO on my phone and listened to it again today. I feel better after hearing it a second time and knowing that this approach is pretty much standard, I am more comfortable with his "relaxed" attitude.
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Grandmax3 - Yes to getting the oncotype. It will determine if you need chemo. And maybe a second opinion? My schedule has been Onco-centered who I see every 3 months, blood work prior to each meeting, with plans to move to every 6 month when I reach 3 years out. Hope your recovery from recent mastectomy is going well.
Thinking - no fun when blood values start going crazy. Hopefully the 4 points will remain 4 or move down. Cancer drugs are gifts but not without risks. Good luck with that!
MJ - my bio-markers were low, around 10, until a year ago. They starting creeping up to reach 31 last month. They never dropped not even a few points. And the linearity of the increase got my onco's attention. That together with my losing 10% of my weight for no reason (I hate changing sizes) lead to more testing. Please keep an eye on those values.
Now waiting for results of thyroid ultrasound. I hope to hear Monday what the next steps are. Hoping for "monitoring" as I am so done with surgeries. Will share update. The hardest thing has been not telling my family yet. I don't want to worry anyone unnecessarily. Lucky that I can come here with my worries. I feel profound gratitude for each of you and your words of support 💕
Hugs, Nisa0 -
Hoping for 'monitoring' as well. Hang in there, Nisa!
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my MO does no tumor markers. Always wonder if in getting proper follow up. He just does normal blood work and sees me every three months. What does regular blood work tell anyway?? Can it indicate anything
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Hi Thinking...are you sure your MO isn't looking at markers in that blood work? that is how they are measured. (a blood test looking for certain 'markers' in the blood). I'd ask what he is measuring with the blood tests.
Nisa: hoping for monitoring also.
Hugs for all
Octogirl
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A lot of oncologists don't do tumor markers because they are very unreliable and can bounce around a lot for no particular reason (and may also be fine even if you aren't). That being said, I am glad mine does them, as it gives me a (probably a false) sense of security.....that perhaps trends with numbers going up be could red flag which might warrant further testing.
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grandma - I am almost 5 years out from my Stage 1a, Grade 1 IDC DX. I had a lumpectomy and 33 Rads treatments. My ONC doesn't order the tumor markers test because she said too many false positives. I do have blood tests. What she does check is how Tamoxifen is affecting my vitals. I was initially on Arimidex because I am post menopausal too but it does attack the bones and I was borderline osteoporsis. so she switched me to Tamoxifen. I am surprised your Dr gave you a choice,
I did have the Oncotype test because my ONC ordered it. She was ambivalent about treatment so the results of my test confirmed I didn't need chemo. My score was 11 with an 8% chance of recurrence. It is an expensive test but my insurance paid for it.
She does order bone density tests for me but it is more about my osteoporsis than anything else.
The other tests you mention like Vit D, cholesterol are typically done by your PCP and in my case my OB-Gyn who does a blood profile on me every year at my request.
Btw my ONC is pretty laid back too. Better than the opposite but I understand he needs to keep a close eye on you especiallyin the early going. You have to feel confident you have the best doctor because your ONC will be your go to doctor for years to come. If you feel he isn't attentive enough maybe you need to change.
Diane
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Thanks, Dianne - I recently had a bone density scan and was told I have "bones of steel" so I think that's why the choice was left up to me.
I think I would like to find someone who is more attentive. I live in a small town but there are several major cancer centers close enough to get to. If anyone has a recommendation for an oncologist in the Baltimore/DC/Wilmington/Philly area, please PM me.0 -
hello everyone
So i had my surgery and in still alot of pain grrr. surgery was on feb 9th. soreness and feel like i have been hit by a semi truck. but next step is heal up then chemo March 10th 2016.
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Butterfly - Welcome! I'm sorry you have to join us but nice that you found us. I hope all goes well for you and it has for most women on this forum. The path is never easy however. Chemo is also easier for some than for others. It hit me hard but I recovered. The pain you describe sounds about right. Take your meds and hopefully that will help. And ask away... we are here to help each other.
Gmax3 - ahhh "bones of steel"? I want that!
Ruth - That is a pretty new photo. I still have to learn how to upload one, please tell me where to look for instructions.
My latest update is that I have to seek a second opinion because of "inconclusive" results/recommendation. That is rolling now if my Onco started the process today. I'm not too worried, saving my freaking-out moments for when we get more facts.
Nice weekend to All.
Hugs, Niss0 -
Nisa, go to 'Settings' find 'Avatar' & pick a picture you have downloaded to somewhere on your computer (picasa, photobucket etc.)......that's all there is to it. Hope you can get the second opinion set up ASAP so that you can figure out what (if anything) is going on.
Gmax3, with bones of steel, you should definitely be doing an Al, so I am glad that is what you decided. Als have a better recurrence reduction for anyone who is post menopausal & the SEs are not as severe as those of Tamoxifen.
Butterfly, I hope you are feeling a little better. What chemo regimen are you doing? I did 4 rounds of dose dense AC and, although I didn't feel good; I was able to do everything I had to do (including work full time) and most of the things that I wanted to do too. I guess my advice would be to get any major projects done ahead of time, plan to delegate as much as possible (at home and, if you are working there too) & let little things go (housework for instance.....I hired a cleaning lady). And if anyone asks if they can do anything for you, say YES, and then tell them specifically what you need them to do (bring meals, run errands, drive you to an appointment, whatever......most people want to help but don't know WHAT to do so are glad if you tell them). It is a scary, creepy time; but you can come out on the other side and be really, really okay!
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So if My MO is not looking at tumor markers...I see the tests that he runs on the patient portal...looks like regular blood work that they do all the time..cbc. platelets, etc... does that tell them anything to alert them that something could be going on?? I just feel like a ticking time bomb. I would have thought with my stats that there would be more than just bloodwork..no scans... BS actually said to me"why are you worried, yours isn't the kind that goes anywhere".... Really??? My mouth dropped and I could not even answer that comment.
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TP,
You just put into words what I have been trying to express to my MO----feeling like a walking time bomb.
Two oncologists at Kaiser told me the same thing as you are experiencing re not testing for tumor markers. One even said that there are NO tumor markers for breast cancer! What??? I said without thinking, "Are you sure?!" I mean, who am I to question medically educated professionals? LOL. Have had to do it too many times and regrettably be right.
I check in intermittently with you all but don't post because it is an extremely arduous process on my phone to get to the latest spot to post a reply. But I do receive and read your posts as they come to me by email. Easy-peasy. Thank you all for participating, sharing and supporting. I look forward to your emails.
HollyBoo
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And Nissa, I am keeping you in prayers for stability. You seem like such a calm, clear woman.
HB
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I've been told there are no adequately accurate marker tests for breast cancer. Blood counts can alert to infection or bone marrow problems. Inflammation markers (which none of my docs use) can be a proxy for infection or cardiac problems. ALT/AST can alert to cardiac and liver problems.
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As a stage II person, if you have done the recommended treatments, nothing SHOULD show up. Statistically speaking, we should truly plan on living a long life without a recurrence. Tests/scans etc. are expensive, can have false positives, which can lead to unneeded procedures, expose you to more radiation (with some tests anyway) etc. etc. That being said, if there are still cancer cells circulating out there, none of the present tests/scans etc. are precise enough to catch them "early".....that is the sad, and crappy truth about that part of the equation.
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thanks, Ruthbru! It's nice to be reminded if that every once in a while
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ThinkingPositive - you might want to ask your Onco to elaborate on that "cancer not going anywhere" comment. Maybe he was trying to be optimist? If you don't feel you are being monitored close enough, please go for a second opinion.
HB - calm woman, me? Oh no, sorry to disappoint you 😊 I think the farther away from diagnosis we get, the calmer we seem only because we start to forget how hard it was. Did you only do surgery and no other treatment? Thank you for your prayers my friend.
Ruth - thanks for tip on pic. Now I I have to suffer through getting my picture taken, lol. I have gotten a little skinny lately but am succeeding at recovering weight and (hopefully) erasing some of my new wrinkles, and then model-ready I will be 😉
To sisters in active treatment, we are here for you 💕 hugs, Nisa0 -
Nisa, sorry that you still don't have an answer. My PET scan showed something going on with my thyroid and my blood test showed high calcium levels, indicating parathyroid issues. I had an ultrasound on my thyroid showing 4 nodules, 2 on each side. They biopsied the largest nodule on each side and the results were atypical. So no clear yes/no cancer. With the BC diagnosis, my endocrinologist wanted to be aggressive, so my thyroid was removed when I had my BMX. The ENT surgeon also took half my parathyroid since it was 4-5x larger than normal. The pathology on my thyroid came back clear, so I am glad I don't need additional treatment. Hopefully you get good answers soon.
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Skittlegirl,
Wow re thyroid and parathyroid issues.
I had a parathyroidectomy about 35 years ago after my blood calcium showed trouble. The tumor was the size of a lemon but could not even be detected as huge until scans just before surgery. Totally benign.
Nissa,
Surgery + 25 radiation treatments. AIs but I have bombed out of three due to extreme side effects. I am loathe to try the next but need to screw up my grit and get to it. No chemo. Margins on my chest wall were not sufficient per guidelines but seemed to have gotten multiple varied cancer tumors out. Bilateral mastectomy not recommended. Geesh.
Over a year after radiation and being so exhausted and fatigued, we found my thyroid functioning had crashed. (My term, not my GPs.) BS thought probably related to radiation tx. I think so too. Timing coincided. Still coming back to life from the walking dead. Best I felt for a long time was during radiation despite 3 hour a day trip and treatment for five weeks while I still worked. And despite horrendous burns and rawness. Then I crashed.
I am in a mission as of this week to get exercise into my weekly routines. The exhaustion, thinking it would pass, then breaking my foot twice due to balance issues, and I had excuses to wait to exercise. Who am I fooling?! So, tomorrow I go to a local weekly class for a workout with weights with women my age. Wish me clarity to keep going and find my other exercise anchors.
Nissa, I hope you find out soon what you are dealing with. So hard to wait.
Thanks for the heads up about your calm-not-so-calm self! I still like and respect you!
HB
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Skittle - Yay to your good news! My calcium is off range too which I thought odd considering that Arimidex did significant damage to my bones. I saw you had surgery recently, oh dear, a big hug to you. I wish I were your neighbor to take your kids out of the house to give you a long break, Do you know how they staged your illness when surgery follows chemo? Just curious but lazy to look it up 😊
HB - Yay also to your long-gone friendly tumor from years ago! Please try the next AI, we can help you deal with whatever. Maybe this time your body reacts differently. For support with real exercise, Ruth is your girl. If you want to take up fast-walking and need a partner to chat as you go, you can phone me and we "walk" together lol. Hopefully our time zones would match!
Hugs to all, and a FABULOUS cruise MJ! 🌞⛴🛳🛫🛳🏊🏻🍾🍷🍰🍹🍺🍉🍇🍍🌞0 -
To stage me, I had an MRI, PET, and lymph node biopsy. Positive lymph node plus 2 tumors (largest at 2.9 cm) put me at 2b.
Still waiting for final pathology to come back. I got excited when I got an email telling me that new results were available on my electronic chart. Turned out to be just blood test results. Such a letdown.
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Skittlegirl, . The wait is often very hard. Hope you get the results soon and they are good. Keeping you in my thoughts. Phyllis
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