No more check-ups?

Anonymous

Dear all,

Is there ever a time in our lives when we actually don't ever have to go to doctor's checkups any more? You know, no more follow-ups? Or is this a part of our lives until, hopefully, we are very old ladies and die of something else?

I've been going every five months for what seems like forever (in reality just a little over five years). My MO insists on closely following me because I'm "high risk" (see my status below), but geez, I'm getting sick of it. I'm wondering if there's ever a time in our lives that we actually get to stop, or at least go once a year instead.

I'm putting this question here, because, well--you are my people (wink). Thoughts?

Claire in AZ

Sam2U

Can't speak for myself as I am only 3 years out and still going every 6 months for check-ups, BUT my mom had stage 2 triple negative IDC and she was released from follow-up at the 10 year mark. She was told to go for annual mammograms and "see us if you need us." So maybe there is an end?

goldie0827

I did not want to be released until I hit 10 years. Good thing I insisted, as I got mets after 6 years. I now have doctor appts every 6 weeks! It's sucks, and this will be for the rest of my life.

The choice is yours Claire, you have to be ok with the choices you make. Check ups won't keep you from progressing, but you will catch them earlier, IF they are there. I am by no means suggesting that you will get them. After 3 years of stage IV, I still have no pain and no physical signs of mets.

wallycat

Pretty much what is posted already---there is no rule that someone can hold you to; much of it is comfort in your own skin.

My breast surgeon wanted to see me annually, but when I moved from WI to WA, I had no surgeon here, so I stopped going. My oncologist in WI was just OK and I was ready to dump the second one. Here, I love my onco. She has been there for me when I have had other "doctor" issues and she is available via email and she seems genuinely concerned about people. I don't WANT to stop seeing here. I wish she were a GP.

I don't think any doctor is eager to let a patient go, and part of that is business/income.

My onco in WI used to tell me that early-mets diagnosis is no better/worse than a later diagnosis in terms of mortality.

Most patients pick up their own symptoms and then the doc delves into possible causes.

There are no rules and no one can "make you" do anything you don't want. Maybe skipping a year will ease your stress and it doesn't mean you have to skip it every year. Maybe every other year for a few years and then back to what gives you peace/comfort.

Anonymous

Thanks, hopefully more will post.

I should have stressed I am not considering stopping my check ups; not at all!

But when every 5 months rolls around and another lab test/check up looms, I feel forced to consider that the 2 weeks of anxiety that precedes each visit might be for the rest of my life. Then I began to wonder if "for the rest of my life" was actually true or not, and if there are circumstances when that changes.

Claire

momand2kids

Clare

My onc said last year that I could just go to pcp annually- but I just was not ready for that..... I like to go once a year for the onc visit and the mammogram--then every other year for an MRI--- But it can be stressful- so I make a day of it--I take the day off, go then have lunch or do something fun with a friend. I have a feeling that Dana Farber will be wanting me to move on-but I think I am going to wait until the 10 year mark which is in 2018!

Maybe you could stretch out the appointments-now go to every 7 months, 8 months.... then get to a year?

MmeJ

So much depends on the individual onc, the practice in which he/she works, and - based on reading here for years - the part of the country one is in. I'm speaking only of U.S. patients.

claireinaz, are you still taking anti-hormonals? That could be why they want to see you more often than annually, maybe? If not, since you're five+ years out and standard of care is an annual visit by now, why not just ask why they want to still see you that often? As Stage II, what tests do you get?

My MO told me that if I make adequate adjustment to an AI after being on Tamoxifen for five years, I can go to annual visits. (I finished Tamoxifen in August and haven't yet popped open the letrozole prescription - just not ready to do it and exacerbate the chronic pain syndrome I developed post-treatment.)

I was surprised by this information, since I am IIIc ILC and had bilateral cancers (a "measly" Stage I IDC on the other side). For the last two years, I have had to ask him for a CBC and the metabolic and liver panels. No imaging of any kind except annual mammo on the IDC side. Last time I saw him (November), he didn't even do a physical exam.

I haven't seen the BS since the day after my mast/ALND/lump, or the RO since the last rads session. I saw the PS for the drains removal a week after the surgery, and the expander swap a few months after rads were over. Once a year since then. I think that's more for his sake than for mine. No imaging from him, either.

So striking, the geographic differences.

goldie0827, I am glad to read you are doing well despite circumstances.

Anonymous

Hi all, she runs labs every single time and checks my Vit D levels every year (which I like). No imaging ordered, ever. I'm not sure why--maybe too much room for false positives? Expense? Over-scanning or overtreatment? Anyway, yep, I'm on Aromasin, and that's a good point. She has offered several times to let me go to 6 months, but because of her schedule and mine oftentimes it works out that it's more like five.

Well, momof2kids, that's kind of what we do My MO is in Sedona, about 27 miles south of us, and we usually do something like a hike or what-have-you afterwards. Or lunch or something. It's going to be cold and snowy there this Monday though! Only 40 degrees for the high.

Good point wallycat, that with recurrence, getting it sooner rather than a bit later doesn't seem to make a diff. I hope I don't have to consider that, come day after tomorrow I had read that somewhere else or maybe my MO told me that, and I forgot it.

I haven't had any pain, nothing, and feel great other than the checkup anxiety. I hope that's an indication of something good. I had an intuition that something was wrong about three months leading up to my diagnosis in 2011, before I even found the problem.

I love you guys! Thank you!

Claire

Kayla250

Things are much different for me, maybe the difference is Canada? My oncologist closed my file within months of my last chemo treatment. I even felt like I was intruding for having the clerks go "into-the-basement" to retrieve my file when I had a question about side effects of letrozole, switched to Anastrozole. We are passed along to our GPs for follow up mammograms once a year for five years.

***sorry, I just read this was for a ILC forum*** I'll just leave my post though, unless you'd like me to remove.

sgreenarch

Interesting. I had this question, too. Last June, at my 6 year check up, my oncologist told me that I didn't need to come back to her anymore. That I was to continue seeing the breast surgeon twice a year and have my annual screening (mammogram, sonogram then MRI six months apart.) She said that if something were to be found, I can come back. Until then, no need. I am still taking Femara, will be until 2020, but am basically ok. Bone scans each year, too, and they've been fine. When she told me that I didn't need to come back next year, I felt uneasy, a bit cut loose, but then I realized that she really doesn't do much at this visits anyway. It feels strange, but it is logical....all of the other screening is the key. Trying to live healthy and not need to call her

Anonymous

Sgreenarch, that's great! I hope you can trust that you'll be okay regardless. With +node status, I doubt I'll ever be let go completely....but I still wonder about that, too.

I think I'll go read the positive node good news stories now...4 hours till C-time (check up time).

goldie0827

Good luck today Claire. Are you happy with your MO there in Sedona? I go to a doctor in Scottsdale. 4 hour drive, one way, every 6 weeks! Labs and scans I get results in about 2 days. No need to wait weeks. I have accounts on line with Simon Med and Sonora Quest. Sometimes my labs are ready the next day. So no waiting at all!

MmeJ, thank you. I spent a couple months in the rabbit hole. Took me that long to get out of my own head. It's so hard not to get depressed. Especially since I feel so good.

Anonymous

Okay, ladies, I got an all-clear for now, so relieved.

Some interesting info at yesterday's appt:

I finally decided, after doing my research, to get the Xgeva/denosumab) injection because of osteopenia and hopefully future protection from the baddie attacking my bones, but I thought I was getting Prolia. I got the injection; I read the info they gave me AFTER I left and drove 27 miles home and found out this is a 12x a year injection? I thought I only had to have it 2x a year. So I've got to call them. Sigh.

BCI test: For me--I'm high risk because of 6 node+ status--she doesn't recommend the BCI test because it isn't accurate enough for her comfort level. She did some research and found that all the research was based on node negative patients or those that had maybe 2+. If we ran the BCI test on me, and it came back that I wouldn't benefit from AIs beyond five years, she wouldn't (and I wouldn't) trust the accuracy since I have 6+ nodes. So I've resigned myself to at least 10 years on AIs.

I asked her about mammos for those of us who have BMX and recon. She said it's overtreatment and that they don't seem to help any more than regular self exams and regular, consistent MO check ups. I'm good with that too.

As well, I asked her about getting annual ultrasounds for ovaries and uterus (I had asked my gyno to do this, he did for two years then asked me to double check with my MO) because sometimes ILC can metastasize there. She said it's rare unless you're BCRA, and I'm not. So no more US for me unless there is another indication of a problem, and I'm okay with that.

So all in all it was a good visit.

Thank you for holding my hand through the anxiety of waiting for my regular 5-6 month check up.

Claire

goldie0827

Glad you are happy with your visit. I have done the Xgeva, it's pretty easy, but expensive as well. I have financial help with it and my chemo drugs. Waiting for my Xgeva to arrive, as I am going out of town on Friday for 10 days. My husband gives me the injection. I have not experienced any SE's from that. What AI are you going to do for 10 years? I did 5 with Arimidex, but that is all that is recommended for that drug, due to bone damage from it. I have mets to the bones and often wonder, these drugs that are suppose to help, DO THEY REALLY????

Anonymous

Hi Goldie,

Aromasin/exemestane. I tried Arimidex for about 18 months and it made me crazy moody-angry, bloated, joint pain, trigger thumb and finger that got worse, and gaining weight. Thank god I'm responding to Aromasin. The side effects from arimidex went away as soon as I switched.

The Xgeva's advertisements sure claim they help bones after metastasis, but that's kind of circular reasoning since they are selling themselves, right?

I'm not now sure I got that Xgeva; the nurse gave me a zipper pouch and a spiral bound handout inside about Xgeva, but it also had a bottle of calcium in it, and it might be that she was just being nice and giving that whole "swag" to me since I'm supposed to be aware of my calcium on Prolia.

Why would I get something other than Xgeva? I don't have bone metastases.

I ok'd Prolia, and that's what my MO said I was getting. So I'm waiting for an email from my MO with a clarification. I suspect that I got Prolia and they just gave me the cool zipper pouch with the calcium supps inside to be nice. Confusing though.

I also had my yearly Vit D levels checked, and I'm not happy that they are at 59 instead of 65+ which is where I want them to be. Left a message with my Naturopath to provide some good Vit D other than what I'm taking--Sprouts Vit D drops, about 7000 IUs daily.

Claire

wallycat

Claire,

good to hear your appt. went well. The new thinking is 32 is about the ideal range for vitamin D. I know it is all over the map, but that was the last thinking. If you wanted to go higher, why not just take 10,ooo IU daily. That should bring it up. Also, be careful with calcium supplements...could start heart disease issues. I know, it is maddening to figure it all out and stay healthy.

Thanks for updating us!

MinusTwo

Wally - the normal range I got from my hospital in November was still 30-150. My oncologist's clinic shows the same range. My Vit D had gone down from 64 to 52 so they recommended I continue a supplement of 3000 - 5000 IUs per day.

Anonymous

Okay, more info for those who are curious.

Xgeva is given in two strengths like someone above explained. One is the "prolia" strength, 2x a year, the other is stronger, for bone metasases. So I got the right drug and dose. I go back in August 17 for checkup and injection.

Minustwo, I hate taking calcium supplements, but I'm not worried about heart disease-- I feel like my heart is pretty damn strong--I regularly run, hike, do bikram yoga, lift weights, and am vegetarian about 99% of the time, and avoid high fat anything. Actually I can't eat grease anymore--doesn't agree with me so fried food and meat fat is usually out of the question although I eat wild caught fish about 2x a month. Don't smoke, live in a clean environment-little to no air pollution, and it doesn't run in my family.

MO says 2 Tums a day is good enough. I hate all the "gummie" candy delivery methods anyway, so Tums it is.

Since so far, so good, I'm continuing on my path with supplements, etc. I wonder if my Vit D level was down from 65 a few years ago since I think both times I was tested in the winter...

Claire in AZ

MmeJ

Re Vitamin My former PCP prescribed 50,000 units weekly (that's a prescription) along with 5000 daily (OTC) She did this several years ago. My readings were in the low 20s and she said she wanted to see mine in the 50s. This course is usually 12 weeks and check it again, another 12 weeks and check it again ... I've been doing this since 2012 and the highest it's been is 41 - once. It's usually mid-20s. I get it checked twice a year now (I have to ask for it).

My current PCP has continued to write the prescription for me and tells me there is no harm in continuing it. It benefits me in a weird way, in that for the first couple of days after the big weekly dose I experience modest pain reduction.

I live in a part of the world that has long, cold, dark winters so Vit D supplementation isn't a bad idea for almost everyone. It seems I have a bit of a problem in keeping the level where it belongs. I don't use calcium supplements any more but do consume dairy and dark leafy greens and my levels are fine.

claireinaz, may I suggest you ask an MD, maybe your PCP, for the 50,000 unit prescription - of course I don't know anything about your insurance and it's none of my business, but mine is covered by insurance and I have a very modest copay for it. I assume your naturopath can't write prescriptions - ?

wallycat

http://www.health.harvard.edu/blog/vitamin-d-whats...

more interesting debates.

Anonymous

truly interesting (about Vit D). My NO just left me high quality Vit D drops at her office for me to pick up. I think she can check Vit D levels too, and I feel like I need to have them checked more than just once a year.

I read somewhere on these boards long ago that somewhere around 55-70 is where we b.c. ladies should try to reach for.

I know though that too high Vit D levels can mimic bad things going on in our bodies--can push calcium in our blood up higher--my MO told me she'd be worried about that since it can indicate something dangerous happening other than NED. So there is a line we don't want to cross by taking too much.

Claire

MmeJ

Yes, we don't want it too high or that causes its own problems. Obviously I am not very responsive to even the prescription supplementation but I am going to keep taking it - long cold winters, slathered in sunscreen, long sleeves, and wear eye protection in the summer. :-) claireinaz, you seem to respond to the supplements well so maybe you don't need the prescription gelcaps after all.

Thanks for the link to the study, wallycat. Interesting, that.

wallycat

I take Chris Kresser's info with a grain of salt, but he also had some interesting stuff:

https://chriskresser.com/vitamin-d-more-is-not-bet...

and this: http://www.medscape.com/viewarticle/589256_7

MinusTwo

Wallycat - even with your grain of sale, Kresser is saying 30-60 is normal. I couldn't access Medscape.

I liked the first link from Harvard the best, but I still think it's a cop out not to site a range for "other people". We're BC folks and many of us have osteopenia or osteoperosis, if not from age then from the meds. WTH does 'treated as appropriate' mean? It really would be nice to have a guideline for 'high risk' people, or even pregnant women.

In addition, certain populations will require that vitamin D level of 20 ng/ml or higher. This can include perimenopausal women, people diagnosed with osteopenia (reduced bone density, but not osteoporosis) and osteoporosis or other skeletal disorders, as well as pregnant and lactating women. All of these groups should be screened and treated as appropriate.

Anonymous

What also infuriates me is those of us with + nodes (more than just, say 1-2) are almost never used as studies. Does Vit D supplementation better help those of us at high risk and thus more prone to recurrence? What should our optimum levels be?

My doc won't even order the BC Index test for me (and I agreed). It was tested/researched on women who didn't have + nodes, and since I am high risk (+ nodes) my doc told me that we might get false good news, like I didn't have to take AIs beyond five years when instead, because of my status, I would benefit from going to 10 years or beyond.

Grrrr.

wallycat

I agree with you guys...I too wish there were factual guidelines that we could directly apply to ourselves. My point being that there are ranges and that maybe fixating on a specific level is overthinking it all. When I worked for a wellness doc, we did a butt-load of research on this. We found some people develop kidney stones from higher levels of D; some men got prostate cancer for taking higher doses of D...blah, blah. Since the nutrients/vitamins we take in are synergistic, you aren't just affecting this specific topic: bones or cancer or ?? And in natural life, nutrients fluctuate. Bodily stuff is always measured in "ranges" and that's the best we can hope for right now.

I'm not trying to argue; I'm trying to reassure. Sometimes less is more.

MinusTwo

Wallycat - of course you are right. Nobody really knows and we have to do what we determine is the best for ourselves in each individual case. For me - I'll keep taking 5000 IU Vit D every day until my next blood tests. So far even at 5000 IU, my scorfe dropped to 52. Too bad we didn't all go to med school, but even then, the answer are contradictory.

Anonymous

So is it normal for our Vit D levels to vary from say, 65 to 57 even when we are taking the same amount of IUs?

Hopeful82014

Claire, I think it is possible for our individual levels to vary, based on absorption rates (influenced by whether consumed with/wo fats, for example), exposure to sunlight (which can vary seasonally even in AZ due to the changing angle of the sun) and who knows what other factors. I'd be interested in a professional's take on this, of course.

Sorry to barge in on an ILC thread but I've been following the Vit. D discussion with interest.

Anonymous

Hopeful82014 you're one of our girls, ILC or not. The more responses the better!!! Your response sounds logical. I just picked up my high-quality Vit D drops at my naturopath's office yesterday. They also test so I think I'll ask them to test me every six months instead of the every year that I was getting from my MO.

Yesterday it was nearly 70 degrees in Sedona and I made sure to wear a short sleeve shirt while hiking. I understand that exposure to sun is the best way to make Vit D in our bodies? I don't put sunscreen on except when I know I'll be in the sun for more than about 1/2 hour or so.

I get my skin checked every year by my dermatologist for any problems. Living in AZ nearly all my life, and at my age (grew up when all we used was Coppertone, and it didn't have good sun block in the 60s), I know there is a fine balance between sun exposure and too much. The sun just FEELS so great esp. after a long cold darker winter.

Claire

wallycat

LOL, I hate the sun! Hate warmth and bright. I should have been a bat!

Hopeful82014 posted some good possibilities. Also remember that the lab draw and the machines checking your blood could have discrepancies. Calibrating is not done each time the machine is used and how the blood was drawn, how hydrated you are affects values for some draws.