I wonder if there is any variation in the way us stage 4 patients are monitored. In particular I would like to know the following:
(1) How often do you go for a check up ?
(2) Have your check-ups become less frequent as time has gone on?
(3) Do you have blood tests at every check up ?
(4) Does your medical team explain what they are testing for?
(5) When are you given the results of the blood test ?
(6) How often are you given scans. Are you given scans routinely at each check up, or do you get a scan only when you mention a new symptom?
(7) Does your medical team explain why you are given a particular scan?
hi lemon
good questions.as you know im in Canada so this is what my oncologist has me doing so far.
I have an exam/check up every 3 months.I have a CT scan 2 weeks prior to all my exam/check ups get the results at the time of my check up.But my oncologist has called me at home to give me results from my recent PET scan.Nice!
My oncologist does blood work for my liver,to check for elevated enzymes,but I dont think she belives too much in the tumor marker tests.As I recall,she says they are not to reliable.I will have to confirm when i see her next time though.
If I have any problems or complaints that come up in between scans, my onc will see me and order necessary scans and blood work.
Hi Lemongrove
As you know I’m still having quite active treatment so I haven’t gone onto a maintenance regime yet - so can’t answer most of your questions.
As for scans, it will be a bone scan and CT scan every 6 months.
finty xx
Hi, interesting questions, my answers below.
I’ve noticed, over the years, there is a huge variation in how stage 4 patients are monitored. But I’ve met many women with stage 4 bc who want very little monitoring if it appears their treatment is working and they feel relatively well. So perhaps this sometimes has a bearing on the differences. I feel reassured being monitored closely but I know some who would not like to have the number of hospital visits this requires. (I’m an NHS patient.)
(1) How often do you go for a check up ?
I’m at the hospital every 3 weeks, for my tumour marker results, chemo and an appointment with the Oncology doctor who works with my Oncologist.
When I was on hormonal treatment I was at the hospital every 4 weeks for blood results and Oncology doctor appointment.
(2) Have your check-ups become less frequent as time has gone on?
No my check ups have been consistent since I was diagnosed with both breast cancer and bone mets in 2003. (and I’ve also always been seen by the same team of 2 Oncology doctors and my Oncologist since diagnosis.)
(3) Do you have blood tests at every check up ?
Yes.
(4) Does your medical team explain what they are testing for?
Always. And I’ve been able to request other tests.
(5) When are you given the results of the blood test ?
Approx 5 days later.
(6) How often are you given scans. Are you given scans routinely at each check up, or do you get a scan only when you mention a new symptom?
I’m having 12 weekly scans at the moment and have always been able to request a scan or ultrasound. The scan appointment comes through within 2 weeks and I get the results the following week.
(7) Does your medical team explain why you are given a particular scan?
Always.
Just bumping, as I think it will be useful for me and others to compare things, and get an idea of what standard of service to expect.
Hi Lemongrove,
Things have changed a little bit for me because initially I was the kind of person that didn’t want to know anything - they’re the professionals and they know everything. But then I became more involved and researched a lot more and becoming more proactive in “beating” this illness. So, here are my answers.
(1) blood test - was every 4 weeks, but now it’s going to be every 6 weeks. PET scan - every 5 or 6 months for now, but was told the standards is every year! Going to question that one, I don’t feel secure enough for having just one scan a year.
(2) When I was on active treatment (chemo), the check up was every 3 months, I can understand that’s to make sure the treatment is working. As I said before, I think a scan / check up every 6 months should be continued rather than changing that to every year.
(3) The blood test is done on the day of my IV zometa. But I don’t have a blood test before my PET scan.
(4) I think this should really be common sense after we had a mets dx for several years. I’ve learnt this pretty quickly. Blood test, PET, MRI, CT… I had to ask the first time round, though. Poor communication is the problem that I would stress. With me, it’s more of the case if I don’t ask, I don’t get it explained. But if I ask, they’ll always take the time to explain everything to me.
(5) The full blood test needed for my IV zometa is given on the day (an hour later after it’s taken because we’ve got an on-site lab), however the tumour marker has to be sent away to a lab in London to get it processed, so it usually takes about 3 days to come back. I usually get it the next week when I’m in the clinic for my PICC line clean. But now with my line coming out and not going in the clinic every week, I’ll need to think of something else, maybe ask them to post it to me. Scan result usually takes about a week to come back and we usually have an appt where everything is explained. I said usually because a few times my onc actually forgot to bring the report with him and had to say things from memory!! Doesn’t inspire trust - if he has forgotten the report, how could I be sure he has remembered my scan results correctly!!?? Planing to ask for a copy of the scan result to be posted to me at the next scan.
(6) At the moment, it’s given routinely - every 5 or 6 months. My onc is sliding towards switching to giving scans when symptoms arise (tumour markers start to go up). Have to think about that one. There’re pros and cons of both options.
(7) Yes.
Since I’ve taken the “proactive” approach, I found that my medical team has become more “lazy”. I’ve been suggesting the scan dates of course they can’t remember when was the last time I had my scan! Make sure they’ve got my drugs, they’ve sent off my blood for tumour marker test etc… But, that has given me a sense of “control” in life. After all, we know our bodies better than any professionals and seems to have a feeling that something is working or not.
xx
- How often do you go for a check up ?
Every other Zometa (i.e. every 8 weeks) with the duty oncologist, I don’t know if this is their official title, they may be registrars, they discuss results and side effects etc, but refer me to the main oncologist if a major decision needs making) I see the main oncologist (or am supposed to, but in reality it is usually somebody else in a different clinic every 3 months)
(2) Have your check-ups become less frequent as time has gone on? NO, but then I have been unlucky that in the time since secondary diagnosis I keep having progression and new treatments are tried.
(3) Do you have blood tests at every check up ? Yes I go for bloods an hour before my monthly Zometa, they test on site and the results are back before treatment. They don’t do tumour markers at this hospital.
(4) Does your medical team explain what they are testing for? Yes
(5) When are you given the results of the blood test ?
I’m not, they go to the team administering treatment, so far they have all been OK, so treatment has continued.the results are written on the paper attached to my notes so I guess I could ask but don’t.
(6) How often are you given scan,
I have been scanned at least every 3 months, but again they are concerned about my mets not stabilising, so I have had CT every 3 months and a variety of other x-rays and MRIs when I mention symptoms and pains.
(7) Does your medical team explain why you are given a particular scan? Yes
It is a good idea, as it is useful to compare, however I feel that my monitoring is related to my current situation and if my mets stabilised I don’t know if I would still be scanned as regularly or possibly more so if more progression.
Nicola xx
Q1 & 2) Checkups are usually every 3 months with onc (or registrar) plus 6 monthly with surgeon. If there are any issues etc, then this changes. My last one was after a month as they found a slight spread in bone mets but I’m now waiting for my next appointments after a one-off rads zapping.
Q3 & 5) Blood tests are done once a month when I have my zometa as I’ve the lovely bad veins but they don’t wait for results as I seem ‘stable’ each time. Don’t get the results but know that if there was a problem, I’d be notified.
-
Always explain what they are testing for
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Bone scans have varied between every 6 months to 9 months depending on how I seem or if, as was the case last time, I report any unusual/new aches etc. Had only the odd u/s and I had my first CT scan ever a fortnight ago after the bone spread. Never had MRI or any other scans or x-rays.
I suppose in many ways, my monitoring and treatment seem very much the same as Nicola’s. I’m quite satisfied with the amount of monitoring and info I get and know that if there are any queries etc, I can just contact them. This has tended to be oncology themselves rather than the breast care section as I have no contact, regular or otherwise, with a BCN.
Interesting to compare notes so thanks for this thread.
Liz x
Hi lemongrove.
This is an issue that concerns me. This is my experience.
1, 2, 3. I have blood tests every 3 weeks (FBC, LFT and U&E’s). I ask for a tumour marker test to be done every 3 months. If I didn’t ask for the TM test it would not happen. I get the TM results when I ask for them over the phone. I have now been put on telephone consultations with a nurse so I have not seen an onc for a long time.
I have only ever had one bone scan and that was 2.5 years ago. I have asked for another one to be done but the onc refused as he said I did not have any symptoms therefore there was no point.
I had two MRI scans on my liver one at diagnosis and another about 12 months after that. I asked for another MRI scan 6 weeks ago and I was told by the nurse that they would check and get back to me. They have not got back to me.
I am not very happy at the way I am being monitored but when I question it I come up against a brick wall. I referred one registrar to the standards of care for secondary BC. She did not seem to know what I was talking about and suggested I go to a support group.
What do you suggest lemongrove.
(1) How often do you go for a check up ?
Usually every 12 wks
(2) Have your check-ups become less frequent as time has gone on?
As I have had 2ndaries for 9 years the check-ups havent really become less frequent. It depends if I am having problems then they are more frequent 3 or 6 wks then extending to 12 weeks again but never longer.
(3) Do you have blood tests at every check up ?
I have blood tests every 3 wks
(4) Does your medical team explain what they are testing for?
No need to - they are always the same. Full bloods and TMs
(5) When are you given the results of the blood test ?
I am not given results, but if I ask they will always print them out for me.
(6) How often are you given scans. Are you given scans routinely at each check up, or do you get a scan only when you mention a new symptom?
I have made it known I do not want regular scans. I will ask if I want them and they have always done so. If I have problem with more pain they always do MRI and sometimes bone scans.
(7) Does your medical team explain why you are given a particular scan? Don’t need to - usually because I have asked I am aware of why.
Dawn
Hi Alex, I’m not sure I have an answer, because it appears (from the variety of experience described above), that there are no set standards when it comes to metastatic cancer.
I know that Breast Cancer Care have successfully campaigned to ensure that data is collected when a patient is diagnosed with metastatic cancer (apparently before this info was not collected), and that will hopefully lead to improvements in the way cancer is monitored and treated, but I’m not aware of any set standards in the monitoring/treatment of metastatic cancer as of yet. It would be helpful if BC Care could clarify this because at least then patients can point towards what should happen.
I was dx with bone mets 10+ years after primary, that was March last year so not quite a year yet.
Since mets dx I have a CT scan every 3 months, followed a couple of weeks later by appt with onc (or one of team).
There was some talk at last appt of moving me to 6 monthly as I appear to be stable. This hasn’t happened yet as I wasn’t very keen on the idea!
I have blood tests every 4 weeks when I go for my Zometa, they do usual bloods ie liver,kidney function etc plus tumour markers. I don’t actually get the results but if I ask about tumour markers they can usualy find it on file.I guess they’d contact me if othwr tests showed abnormality.
When they were first testing me for secondaries I had x-ray, bone scan and MRI as well as CT, since dx I have only had the 3 monthly CTs.If they did want other scans done I think they’d explain why - if not I’d ask anyway!
Julie
(1) How often do you go for a check up ?
It has varied depending on extent of disease… from 3-monthly when having 6-monthly bone scans, to weekly when on weekly chemo.
(2) Have your check-ups become less frequent as time has gone on?
No, more frequent as the disease has progressed.
(3) Do you have blood tests at every check up ?
Yes.
(4) Does your medical team explain what they are testing for?
Yes.
(5) When are you given the results of the blood test ?
Always same day -an hour or so after the sample is taken! (isn’t medical technology amazing!) except for tumour markers which can be the next day.
(6) How often are you given scans. Are you given scans routinely at each check up, or do you get a scan only when you mention a new symptom?
Scans have usually been given on a set schedule, I’ve had few if any symptoms that “needed” additional scanning. I did have an extra spine MRI but this showed a non-cancer-related problem, eventually sorted by NHS physiotherapy 
(7) Does your medical team explain why you are given a particular scan?
Yes.
hello Lemongrove
My treatment has varied because I changed hospitals and consultants.
1.My checkups have varied according to the treatment.Evey 3 weeks during chemo,every week during rads and then changed to 3 months.
- Apparently yes they will become less often.Had checkup 2 weeks ago for scan results and told to come back in 6 months,unless I have any problems and can contact unit.
3.Only had bloods taken during chemo and when starting treatment at the new hospital.
4.Yes
5.Have only been given results day before chemo or at next consultation.
6.Had scans at dx and then before chemo,midway.and at the end.Then had full set of scans when registered at the new hospital.Had mri and bone density which had never had previously as former onc deemed unnessary.
7.Yes
I too am concerned about how monitoring works.It is difficult to see if the treatment you are receiving is at the level it should be.As I have only been to my new hospital a couple of times I have not yet been able to compare the two.The best thing is I moved from treatment at a large, busy hospital to a small breast care unit so the waiting is less, there are no crowds so the stress levels are less and it is a much better experience.If attending hospital can ever be a better experience!
Lucinda xx
Hi Lucinda,
I agree. It’s difficult for a patient to know if the treatment/monitoring they’re receiving is at a level it should be, when there doesn’t appear to be any set standards.
Was hoping that Breast Cancer Care could confirm one way or the other whether or not there is anything set down, that we could point to. I know BC CAre have campaigned quite hard to ensure that data on metastatic patients is now collected (wasn’t previously), so hopefully that will eventually pay dividends in terms of improved monitoring/treatment.
bumping
Thanks for starting this thread Lemongrove.
- How often do you go for a check up ?
Following liver and bone mets diagnosis in September 2008 I started off having a check-up every 3 weeks during Taxotere chemo, then every 12 weeks, then every 3 months. At my last appointment I was told I would now be put on a 6 month check unless I had any symptoms that needed investigating sooner. I haven’t yet had any further progression since diagnosis and had RFA treatment to my liver mets in 2009 so at last CT in November was NED in my liver. If no change at the next scan they will move to yearly scans (though I’m quite frightened by this!)
(2) Have your check-ups become less frequent as time has gone on?
Yes as above
(3) Do you have blood tests at every check up ?
This has been patchy, as time has gone on my onc seems to have become less concerned with ordering them so I tend to just go to the blood room before each check-up and ask for a repeat of the last set of tests.
(4) Does your medical team explain what they are testing for?
Yes.
(5) When are you given the results of the blood test ?
Haven’t been given them recently as we always talk about my CT scan results at my check ups rather than bloods.
(6) How often are you given scans. Are you given scans routinely at each check up, or do you get a scan only when you mention a new symptom?
I was having CT scans every three months the week before my check ups but this has now been changed to every six. I have only ever had one bone scan as my onc says the CT is sufficient for imaging my bone mets.
(7) Does your medical team explain why you are given a particular scan?
Yes.
I have Emailed BC Care to ask if there are any set guidelines/standards when it comes to monitoring/treating stage 4 BC, and they are kindly looking into it, and will get back.
If there are standards, patients need to know so that they can point to them when necessary, and if there aren’t - there should be.
Hi everyone. Here is a response from one of our nurses, in response to Lemongrove’s email:
"First of all thank you for this really interesting debate about how stage 4 disease is monitored, including what happens in your experiences and also sharing what you would like to happen. Part of the work we do at Breast Cancer Care is to represent your voice at policy meetings in places such as NICE (The National Institute of Health and Clinical Excellence) where we relay what you tell us about your experience. There are a number of ways you too can be involved in having a voice about care for people with secondary breast cancer via Breast Cancer Care, such as campaigning or by joining Breast Cancer Voices. Find out more here breastcancercare.org.uk/get-involved/ and here breastcancercare.org.uk/secondary-breast-cancer/campaign-with-us/
"To comment from a clinical perspective on the monitoring of stage 4 breast cancer, there are no current clinical guidelines stating when blood tests or scans etc. should be carried out. Treatment for secondary breast cancer, including the monitoring of treatment and disease is based on the individual person, therefore any tests/investigations that need to be carried out are based on clinical judgment. Ideally all treatment and monitoring should be discussed with the patient, and their views taken into consideration. I have said ‘ideally’ because unfortunately we are aware that this may not always be the case.
"I would suggest if you are not sure why you are having a test, or you feel you would benefit from further tests, it is important to talk this through with the specialist team caring for you. They will have information about how the breast cancer and treatments are affecting you, and this will influence which and when tests need to be carried out and why.
"Please do call our freephone Helpline if you would like to talk through your concerns with someone - the number is 0808 800 6000.
Best wishes,
Tara
Clinical Nurse Specialist - secondary breast cancer"
Thanks to Breast Cancer Care for answering this.
In my humble opinion, it is quite shocking that there are no set standards concerning the monitoring and treatment of stage 4 BC.- given that standards exist in practically all areas of medicine. Obviously, BC is an individual disease, and requires a tailored response, but that is the case with all disease - yet standards and guidelines exist in other areas of medicine. For example, only this week guidelines have been issued concerning how heart surgery should be carried out on children (i.e, there must be at least four surgeons present during operations).
Sounds like this is something that needs to be addressed - anyone agree?