Once visits only every two months not monthly.

I have been seeing my oncologist every month for the past year and a half. Everything has stayed the same with no progression. My last appointment he said we would now be meeting every two months and in between he would call me (during my one week break) I always have to wait three weeks for my neutrophils to go back to safe levels but he said to let them know when I have my blood work and they would make sure they checked the results and call me. He said that after awhile he would then go to twice a year visits. It worries me 😞. I assume my ct scans will still be every three months. Is anybody else on this schedule?

[SoCalLady]

I am on every three months and I have never had my onc volunteer to call me!

[Hidden in reply to SoCalLady]

Thanks for the reply. Nice to know I’m not the only one.

[Hidden]

Hi Sarcie,

I have been seeing my oncologist once every three months (apart from when we first met; there was a two-week gap between our first and second appointments) since last year. CT scans are performed once every three months and then I see my oncologist two weeks later to get the results. I would love to just get the results over the phone, rather than having to visit the hospital, although perhaps it's done in person as a protection.

Sophie

[Hidden in reply to Hidden]

Thanks Sophie. I looked at it as good news that things were stable but of course I second guessed the reasoning. 😃

[Hidden in reply to Hidden]

You're welcome! Stable is always good news.

[nstonerocks]

I also see my oncologist about every 3 months for the past few years. I am stable, once in a while some progression, but she has managed it with drug changes (letrozole, then letrozole + ibrance, now faslodex + ibrance). To tell you the truth, I don't know why we meet so often. I get scanned once or twice a year. Nothing much happens on my visits. It's a long way to go for a look-see. I'm not worried. So far, this schedule has been working for me.

[Hidden in reply to nstonerocks]

Thanks for the reply. It certainly will be nice not to have to drive to the hospital and try to find parking.

[Bailey3266 in reply to Hidden]

You may ask doc for handicapped placard form letter to be sent to TMV then go on-line and request it to be mailed. I truly only use mine in very inclement weather since I kinda have frequent falls and severe muscular side effects from ibrance/Gemara at times that makes it difficult that walk. I try to be honest as my mom 30 years my senior or someone me like her may need that spot more than I. But typically at meters you do not need to pay which is especially helpful for medical appts.

[Hidden in reply to Bailey3266]

I actually have one but not nearly enough spots.

[barbarac76]

For five years I saw my oncologist every 4 weeks. Looking back, I now realize it was a waste of time and money (for my insurance company) especially when I went through long stable periods.I just didn't know any better. My markers have never been an indicator of disease progression. For me the scans, which I get every 3-4 months tell the story. I switched oncologists recently and she is seeing me less frequently in between scans.

[GollyG in reply to barbarac76]

Hi there, just picked up on your comment about your markers not indicating disease progression - I've just been moved over to 3-monthly appointments but noticed my markers have gone up. I'm a bit worried and onc hasn't responded to my emailed concerns. Hoping my markers don't mean anything sinister either! Thinking rationally, they can't think it's of significance of they're prepared to wait 3 months before another blood test. Just not sure I'm willing to wait that long...

[Mimiholl in reply to GollyG]

I have been going every month for blood tests and xegeva shot. I alternate with oncologist and pa. Every 3 months I have scans and cancer marker test. Last visit with pa, my markers went up 20 points because the are using a different modality? I was told this was consistent with others taking test, using this modality rather than what was used for past almost 3 years! I was given no other explanation, my scans have been great , but it seems like my new score should be placed in a different range rather than the old range. I feel like they are comparing apples to oranges. I have been really worried, and upset that I have not received a better explanation before or after. I hope at my next appointment I will have a clearer idea. For the future I am going to request seeing my oncologist each month rather than alternating with a pa. Has this happened to anyone else, the cancer marker test had previously been done at a different lab and now being done at my hospital.

Thanks

[Hidden in reply to Mimiholl]

I don’t know what markers are as my doctor doesn’t do that. He has never mentioned markers. What exactly are they?

[Onie54 in reply to Hidden]

Sarcie you’re in Canada too I think? In 2003 and now they have never measured ‘markers’ here

[barbarac76 in reply to GollyG]

My markers don't fluctuate very much. The CA 15-3 never fluctuates more than 10-15 points either way (and it has remained relatively low) and my CEA has stayed the same (within the normal range) throughout.

Was it a big change in your markers? I would do the same as you in calling my oncologist for an explanation if I were concerned.

[GollyG in reply to barbarac76]

It went up 20 points - really interested in the possibility that they've changed the way they measure it, as Mimiholl said. Will ask!

[Hidden in reply to GollyG]

I am still having bloodwork once a month just not a visit.

[GollyG in reply to Hidden]

Yes, I'm amazed they want to wait so long - they sent me off with 3 months' worth of palbociclib and the next time I see them will be with scan as well as blood results. Now that's going to be a stressful one!

[PJBinMI in reply to barbarac76]

About Tumor Markers (TMs) : they sound more specific than they are since they are numbers! A change of 20 points can be absolutely meaningless! What is more indicitive is a continuing change over several months. Things besides progressing cancer can impact markers. Not all oncs use markers because they can needlessly cause anxiety. The oncs that do use them generally use them just to suggest that it is time for some scans, which are much better at detecting changes that need to be known. My long time wonderful onc told me that she pays most attention to how we report feeling, scans second and TMs a very distant third. I've had MBC for over 15 years, have been in contstant treatment but am doing extremely well and don't look "sick." My CA 27-29 has been in the normal range for just a few months in all this time and has been gradually rising for several years. I have scans occasionally , changed from Faslodex to Exemestane early last year, and am on just third line treatment. I stopped fretting about individual TMs numbers a long time ago......will save my worry for something much more significant, like bones falling apart or not being able to breathe! Somehow, we need to learn to control what we can control, and not get stressed out by the rest of this crazy cancer life!

[Hidden in reply to PJBinMI]

Thank you for the reply. My doc apparently doesn’t use them. I have monthly bloodwork but that is to check my levels. I always have to wait three weeks for my neutrophils to reach the safe level again to be able to start my next cycle of Ibrance.

You are so right about the worrying. I try to forget the cancer and just deal with my mobility issues (I had a complete hip replacement in October due to the cancer in my bones ).

[GollyG in reply to PJBinMI]

Thanks for your hugely encouraging and wise post!

[Onie54 in reply to barbarac76]

Just curious, did you switch onc because you wanted to or was there another reason?

[barbarac76 in reply to Onie54]

I switched because Memorial Sloan Kettering opened a satellite site 2 miles from my home in NJ. I was previously traveling to NYC. I didn't realized until I switched oncologists that 4-week visits was not necessary.

[Wintervt]

I’m on a three month schedule.

[Survivornow]

I've only been in treatment since this past Fall with Stage 4 MBC. My first PET Scan was a few weeks ago and afterwards, my Oncologist told me that because the tumors were disappearing and I was responding so well to treatment, that I will get blood work monthly and see him every 2 months. I take this as a wonderful sign!

[Hidden in reply to Survivornow]

That’s a good thing. ❤️

[Home18]

I am every three months also after 2 years of going every month. I love my oncologist but it’s so nice to not have to go so much!!

[mariootsi]

I see my onc or pa every 5 weeks now. Get bloodwork and faslodex shots at this appt. If my bloodwork is good I get the ok to get my Ibrance. Scans every three to 4mths.

Would love longer time between visits but so far so good.

[Hidden in reply to mariootsi]

I was 14 months into treatment when he told me that we were switching to every 8 weeks. It will be nice not to have to go in as I don’t live in the city.

[mariootsi in reply to Hidden]

Nice that your visits are farther apart.

[PJBinMI]

I'm a long timer and don' t remember when I started seeing my onc less often than every month, but I think it was within the first year. How often I have seen oncs has varied during the 15 years I've had MBC and for awhile was every 4 months. Right now on an every 3 month schedule, I think I may have had a period of time of stability, not NED, when I saw her every 6 months. She knows I will call between appts if anything comes up that needs to be explored. I know changes like this can be stressful, but it really is common to see the onc less than monthly.

[Hidden in reply to PJBinMI]

Thank you. I assumed every body went monthly but if we did I guess the doctors would be over run with appointments.

[Tam-56]

I get cat scans every 6 mos (in accordance with Medicare), bloodwork every two month and see my Onc every two months

[Kathyquilts]

I was on that schedule until the Letrozole stopped working. Now I go every 4 weeks for Faslodex injections, but only see the oncologist every other visit.

[Teddielottie]

I am ‘stable’ , and currently see my onc every 4 months and have a ct scan after 4 months , however I go for my bloods doing same time every month with the chemo nurses ( who ask me if I have anything to report and after checking my bloods, issue my next month’s supply of ibrance/ Letrozole ). I have instructions from my onc to ring my breast care nurse if I have any changes or concerns in the meantime . x