Oncologist Follow-up?

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Octobergirl
Octobergirl Member Posts: 334
edited June 2014 in Stage III Breast Cancer

Greetings to my Stage 3 sisters! (still sends a shockwave thru my body when I type Stage 3)

I have a question re what you expect and experience in communicating with your oncologist. 

I had a bone density test in late March and was told by the orthopedic tech that report would post to my online healthview site. It posted several wks. later and stated there is significant bone loss in my hip-femur joint area...despite Zometa infusions. For the past two weeks+, I have waited for a call from the oncologist/clinic to go over the test results and go over options and recommendations. No call.  This is consistent with other communication issues in the last 2 yrs. with this practice which I have tried to deal with during regular visits, thru calls and email  In Dec., my husband even sent a certified letter regarding a particularly egregious issue. At that appt., I walked out in tears because the PA (I was supposed to be seeing the onc.) questioned 3 major tx. decisions made by the oncologist and me and single-handedly dismantled my tx. plan in less than 15 mins. All of this required a LOT of energy from me and not inconsiderable angst.

I've persisted in trying to work through this because I valued the reputation of my oncologist and cancer care center and believed it was my best chance at access to the latest research and quality treatments. Now, I wonder. I have consistently had to bring up studies and research applicable to my diagnosis and question treatment options. I even had to point out that I hadn't had a bone density test in 2 yrs. and learned the standard of care for osteoporatic, node-positive patients is yearly testing?????    

I'd like to hear from others about what works and what doesn't and any advice is welcome.

Rainy and foggy here and I'm sitting next to a cheerful fire - IN MID-MAY!

Love to all of you, Molly

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  • carol1949
    carol1949 Member Posts: 562
    edited May 2011

    Octobergrace,  I did a ton of research and also gained inspiration from a dear long time friend who is now about a 15 year bc survivor and she did it holistically.  No chem, no rads, just surgery and then many other complimentary  therapies and supplements.

    I choose NOT to take the prescribed Femara due to the fact that it causes bone loss, hair loss and made me feel like a 90 year old person w/ aches and stiffness.  I use other options to negate estrogen in my body.  My oncologist is very open minded and told me that knowing me, she feels the least medical intervention, the better I will be.  She is also a personal friend in addition to being my oncologist. 

    My daughter is also a nutritionist and gives me diet advice.  Did you know for instance that broccoli negates estrogen?  So  many simple options for us,and more and more people are turning to alternatives and complimentary therapies.

    Do some research and trust that the information you need will come to you.  We don't have to rely totally on modern medicine.

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  • diana50
    diana50 Member Posts: 2,134
    edited May 2011

    hi molly

    i am a big advocate of having a open and honest relationship with your onc.  your onc is one of the most important people you will have in your life....and it is a long time relationship.  i have had three oncs; the first one was killed in an accident...the second one was ill...and the one i have now is someone i trust and i also feel "she is fighting with me"  no matter what your treatment is; i believe you must have a doctor who understands you....who knows treatment options...who keeps track of you....and is able to hear you but also offer their treatment options. 

    ultimately, we make the final choices on pretty much everything.  however, having a good onc means they listen...offer their expertise....and allow us to make our choices as patients.  reputation is important...however....sometimes having a doc you trust is even better.  i also think'as patients, educating oursevles is also the most powerful thing we can do.

     these are just thoughts; but this is YOUR life. not the oncologist's life.  second opinions...and good follow up are key to our health. 

    hang in there

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  • karen1956
    karen1956 Member Posts: 6,503
    edited May 2011

    Octobregrace....as long as I was on AI's my onc scheduled annual BMD....since I stopped them, it is now my pcp;s job...at for a middle age women they are only done every 2 years.   I think trust in your doc is important....I would schedule an consult with your onc and discuss your concerns, then pending his interactions decide if  you want to stay with the practice or find a different onc.,,all the best.

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited May 2011

    My L1-L4 vertebrae were osteoporatic at the first bone density test 2 yrs. ago.  The T-score now is   -2.57. 

    The proximal femur T-Score is -2.60 so has moved into osteoporosis. The report says "Review of most recent measurement indicates there has been a statistically significant loss of bone mineeral density equal to 7%". 

    I do take calcium and vitamin D.  My hips have been hurting recently.  I have had back pain along the spine for years but have plowed right through it.  Now I am finding my stamina is flagging...a letdown...and fearmongerer... because I expected it to improve with time.

    I shouldn't say this. There's no point in saying this. This thinking gets me nowhere but....I'd give almost anything to have a break from cancer.  I guess I'm frustrated and worn down by all this. 

    Thanks for all responses.

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  • carol1949
    carol1949 Member Posts: 562
    edited May 2011

    Octobergrace,  Do you walk?  Do you excercise?  Have you tried any complimentary therapies which may help you w/ the discomfort, fear and fatigue? 

    I have found Reiki to be wonderfully helpful, also writing a journal and reading.  Swimming and/or excercising in the pool is also very helpful as far as soothing the aches and pains.

    Good Luck and let us know how you are doing.

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited May 2011

    Carol, Thanks for the suggestions.

    I've added many holistic practices and complimentary therapies especially  thru the last 2 yrs.   I  walk regularly...no access to a pool at this point. I use www.breastcancer.com  often (traditional Chinese medicine) and practice qigong and accupressure movements.  I love and use Chopra's Soul of Healing meditation daily. I had Reiki therapy while on vacation. It's a powerful intervention and I'd like to find a good practitioner here.  This week, I did find an appropriate yoga class near the house we are moving into. The moving process requires a lot right now and illuminates my lack of stamina and back pain. I would have enjoyed the challenge in the past but it's so so hard now.  Re reading, I do (often in the middle of the night when i can't sleep)...Barbara Kingsolver and The Emperor of All Maladies now.

    Diet...I shop at the local tailgate markets and rarely eat anything but organic foods, very little meat and lots of greens...mostly Mediterranean diet with a lot of olive oil, fresh veggies, garlic, balsamic, wild caught sustainable fish/shellfish, salads and artisan breads. I eat quinoa, couscous, organic almond butter and nuts for protein and make curry dishes (curcumin) as well. Almost no sugar and dairy. We use almond milk and I drink 3-4 cups green tea w ginger everyday, also water and a glass of wine a few times a week. I make most of our cleaners and skincare products so no parabens/toxins. Have eliminated BPAs as much as humanly possible :).

    I admire your courage (and support from strong women in your life) and respect your decision to refuse Femara. It does quite a number on one's body. With so few defenses against recurrance, I am not willing to not take it but I want to discuss the possibility of lowering the dosage since my estrogen levels are rock bottom now. It doesn't make sense to me that everyone takes the same dosage regardless of weight and estrogen blood levels. Along with the bone density issue, I have questions about my Her2 tests...my reading tells me I need to pursue this and possibly get a 2nd opinion.

    So here I am using a lot of energy trying to fight the aches and pains and all the fears that go with them...trying to regain stamina...trying to stay whole and healthy. I'd like to know I can depend on my oncologist to fight on the medical end but I just don't "feel the love". When I read that one of our sisters here said 'I know my onc is fighting for me', the light came on and I realized what's missing. It isn't emotional or mental support...it is open communication and practical support from the person who controls my medical treatment...the area where I have no expertise. I dread the thought of pursuing these issues...working my way thru the office minions to get a word with the Doctor, capital D. I'll do it but I'm.still wanting a break from this. Not embracing this "new normal" yet.

    Sorry for the length of this. I guess this turned into my therapy session for the week.  Hope you have a good weekend and thanks

    Molly.    

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited May 2011

    Whoa! That's a LOT longer than it looked in the preview and I am just too tired to edit down..1:40am.  I'm so sorry for the length. Shazam!

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  • carol1949
    carol1949 Member Posts: 562
    edited May 2011

    Molly,   thank you so much for sharing all of the information.  I would have to agree you are doing a lot!!!  Just continue to be hopeful and also understand that studies show the 3 most stressful things in life are death, divorce and moving!  You are under stress w/ the move alone in addition to this bc journey!

    For me my decision was based on the fact that no one is promised anything more than this moment of this day and I decided that if I have a year or 2 or 10, I would rather live it feeling well, than feeling all achey. 

    Love and Light,

    Carol

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  • 37antiques
    37antiques Member Posts: 643
    edited May 2011

    Molly, you're doing good, but I would re-think your onc's office.  It seems (to me) the most up to date specialist's offices really aren't up to par with the standard of care.  That being said, since you have a direct online link, why not send your onc an e-mail if that is available to you?  I would tell them you are disappointed by not seeing the onc but a PA who minimized your feelings when you were at a vulnerable point and trying to cope with some serious questions you had regarding your health.  I'm not saying that this office doesn't know what they are doing, but no one should be allowed to rip apart the treatment options you had available and the decisions you made for your care, I'm sure you spent a lot of time deciding on what was right for you.  Things change all of the time, we get treatment based on the best available option.  I would at the very least call the office and tell them you refuse to see that PA again, because they have no personal skills and avoided the reason for your visit.  I hope you get your answers and feel better soon.

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  • weesa
    weesa Member Posts: 707
    edited May 2011

    Molly, I wonder if we should be pm-ing about my onc. Just named one of the best oncologists in NC. If you are interested in learning more about his office staff, etc, do pm me.

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited May 2011

    Thanks for all the support and feedback from each of you. I think I will compose an email to my onc regarding the areas of concern I have to get his opinion.  I am thinking I will seek another opinion regardless of his response and will probably decide to find another oncologist.

    Weesa, sending you a pm now.

    Molly

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  • judylynn
    judylynn Member Posts: 28
    edited June 2011

    You know, it might not be a bad idea to try another oncologist.  The one I use in the office with 3 others, and I always thought if my first one was a fit for me, I could switch.  Communication is so important when we have this disease. 

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