An Interesting Perspective on MBC Progression Monitoring

Bestbird

Just read this and found it quite interesting. It makes sense to me if a patient is asymptomatic. Would love to hear your thoughts.

Disease monitoring for progression can be stressful on MBC patients, as it frequently causes anxiety and discomfort (often referred to as "scanxiety"). According to Dr. Accordino, Assistant Professor of Medicine, Columbia University Irving Medical Center, there are data showing that finding progression immediately when it occurs is not associated with better patient outcomes. Furthermore, doctors may order tumor marker tests and then not do anything with the results - they still order scans on the same schedule they would otherwise have used. So why is the physician putting the patient (if the patient is asymptomatic) through all these tests and giving them scanxiety if the physician is not going to change anything based on the information? Dr. Accordino also stated that doctors should be mindful that these interventions, which make it easy for them to "check off boxes," can have a considerable adverse impact on the patient. There is also a significant cost associated with these tests, which are sometimes passed to the patient. From: https://www.onclive.com/web-exclusives/study-addresses-breast-cancer-monitoring-burden-on-metastatic-patients?p=1

candy-678

I personally, in my case, want the scans, TM's, etc.    When I was first diagnosed with breast cancer I found the lump.  We biopsied it and found it to be Stage 2.  We found the MBC with a CT for an unrelated situation 3 months later.    The liver mets was 8cm when found.  My liver enzymes were normal.  I felt fine all things considered.   No weight gain or loss, no nausea, no pain, no changes in appetite, etc. And at that size the doc thought the liver mets had been there a while.    So if we are waiting for me to have symptoms of progression, I am afraid we will not find changes until much later.  I am "stable" now and I fear my MO will want to back off of scans--we do them every 3 months with TM's monthly. I have not had that conversation with my MO yet, but I plan on INSISTING on the scan schedule.  I have read/heard that every 3 month scans and monthly TM's are Standard of Care and not asking for too much.     For me and my personality I would have MORE anxiety without the scans.  Not knowing how things are doing.  

Interested to hear from others.

Cure-ious

I also noticed this article, and wasn't buying any of it. I think it sounds like the insurance agencies again, trying to figure out a way to reduce costs. They say more frequent scans are no better for "overall survival", undoubtedly based on outdated data (plus, we all know how hard it is to show benefit for OS for MBC anyway, because patients live long enough to be treated with many different drugs in different sequences, hard to show an OS effect for one drug in part of a long sequence of treatments), and they argue we should all wait for "symptoms" to appear.

I still have no symptoms, and MO suggested yearly scans. I said I'd stick with every six months, and no longer have any scananxiety when I have scans, because they are being done at my request. Although I felt fine last month, my nuclear bone scan showed progression in one pre-existing spot (evident in the previous scan, but not so active), plus another new spot, with nothing showing up in the PET/CT. I am just finishing up radiation on those two bone spots. Will this radiation make any difference? What if it does nothing to stop progression, but prevents me from major hip deterioration or pain in my spine? What if the new spot was some newly-mutated cancer and the radiation stopped it from spreading? What if the radiation got my immune system kicked into gear and it goes out and hunts down some cancer cells for another couple of months (abscopal effect)? Alternatively, what if the cancer in these locations continued unabated for six months before my next scan? To me, there are many reasons I wanted the treatment, and nobody will ever know if it helped overall survival (because n=1 patient). Makes a big difference to me, and I would not trade it for the 'convenience" (in this case, false security) of not having to worry a bit about what a scan will show!!!

I do get concerned reading some of these ideas and similar ideas floated around in the press that the future MBC patients may have fewer options that we do, if insurance companies get their way..

PS The RO ordered an MRI to confirm and more accurately map the spots, which it did, but also showed the cancer in the spine was in slightly different location to what was indicated by the nuclear bone scan

LoriCA

When I first learned that my MO wasn't going to do scans every 3 months I worried, why did it seem like everyone was being scanned every 3 months and I wouldn't be? He explained that he doesn't want to scan unless there is a reason to scan - after completing chemo, when I have concerning symptoms, etc. - because he thinks that scanning too often only increases anxiety and doesn't truly help. If I don't have any worrisome symptoms we're good with that, our focus is entirely on my quality of life. He also said that he thinks it is lazy (his word, not mine) for doctors to scan every three months, that they really should be spending more time talking with their patients haha! In fairness I've had a consult (and lab work) at least every 3 weeks since my Dx and he spends as much time with me as I need, I know that others don't get to consult with their MO nearly as often, especially if they are on oral meds. Eventually I learned how to relax about my situation, if I don't have any troublesome symptoms I just want to enjoy life, and when I did have signs of progression I knew it and we scanned. No scanxiety because it was only to confirm what I already knew & determine the extent.

A friend posted an interesting comment on social media - that her first MO scanned every three months and would change her treatment every time a scan showed the slightest progression. As a result she has run through almost every option in a very short time and now regrets it. Even with things like radiation when a small spot shows up, my RO explained that since there is a limit as to how many times you can radiate a spot, why use that treatment before you have any symptoms and really need it, and risk loosing that option when you may really need it for palliative reasons in the future?

I think it all depends on individual situations, but for now I'm glad I'm not on the 3-month scan schedule.

GG27

I honestly wish I wasn't getting scans as often. I'm on a trial & the protocol right now is to scan every 8 weeks, just bumped from 12 weeks on the last trial. I think it's too often, but the drug co is in charge and if I want them to pay for the drug I can't afford I guess I have to play by their rules. They don't have to worry about scanxiety.

pajim

I have two thoughts on this.

First is that my MO totally agrees with Dr. Accordino and that's how we've been doing things since I was diagnosed. So long as my TMs are headed down or stable and I have no symptoms, we don't scan. Well maybe about once every nine months.

But his NP disagrees. She would scan more often. So sometimes I get scans because she thinks they should happen. I once had a research nurse freak out that I was having headaches and some discharge from one of my eyes and insisted on an MRI to check for brain mets (which I didn't have). My MO rolled his eyes and went along with it. I go along with it just to make them feel better. I'm not normally a passive person. If we've gone too long in my opinion, I say something.

I also subscribe to LoriCA's comment that if you go crazy at every little ditzel and switch treatments, you go through them very very quickly. I've stalled with slightly worsening scans for months on end.

But. But. Whilst a lot of women are anxious about scans, many more want them. They feel better knowing exactly what is going on. Or maybe they feel like they are better monitored (and they are!). Or if your TMs aren't accurate predictors of what's going on, you need scans.

Or think on this: I have a friend who has a $150 co-pay for each scan. So it's $300 every time she has them. [don't get me started on her insurance, my co-pay is $25]

Wildplaces

https://www.sciencedirect.com/science/article/pii/...

whole body MRIs are an option, expensive and accurate.

Cure-ious

Important point, Wildplaces! It also points out how the premise of the "don't-need-to-scan" argument, based only on "group averages" is completely misleading, when what we need are more sensitive tests (either scans or an accurate blood test) so it is clear when treatments need to change in our specific case. We need to get more information on which to act, not less.

Pajim, Agreed about the importance of pushing to get the most out of each treatment and not changing drugs until a scan deems it necessary. In my case the hope is that the rads allow me to go longer on I/F. But even better than all of this scanning BS would be if they just hurry up with a blood test that works, and the results could be known immediately and not subject to idiosyncratic interpretations by the radiologist reading the scan, etc..

JFL

Scanning is not uniform across the board because patient's circumstances are not uniform. Scanning depends on the level of cancer aggressiveness, history of the disease and history of what happens when the particular patient's cancer becomes resistant to a medication, overall level of tumor burden, patient preference, patient's overall health and mobility, etc. Medicine is part science and part art.

For me, I insist on regular scans, although when medicines were working well for a long time, my MO would bump my scans from 3 months to 6 months. I don't feel comfortable relying on tumor markers or symptoms alone based on my own history. When I was diagnosed, I was in such bad shape and literally a few weeks away from dying of bone mets (which I didn't think was possible before I was in that position myself with uncontrollable hypercalcemia). My liver was full of tumors at the time but that wasn't causing me any problems. I did have what in hindsight I would say are severe symptoms but they were masked by other things going on in my life - my pregnancy. I thought all of the excruciating pain I was experiencing was caused by that. My OB-GYN told me I was "old" and needed to get a personal trainer to help with all the pain I was feeling. My MO wasn't worried through all this time until the very end. I had some minor changes in tumor markers but they were still in normal range until the very end when they were a point or a few points above normal. Also, pregnancy can cause tumor markers to rise. I am probably only alive today because my DH, who was the only one who was worried, ordered a basic blood panel that showed the hypercalcemia. I spent the next few weeks hooked up to a 24-hour saline drip. I had to go through 6 saline bags a day to try to water down the calcium in my blood and prevent me from going into a coma or having a heart attack. The chemo, bisphosphonates and steroids were not working to lower the calcium levels. Finally, when nothing else was working, I had to have my baby nearly 2 months early. Then a year and a half later, after Ibrance failed, my liver exploded to about 70% mets/30% liver tissue. Nearly the entire left lobe was cancer. However, I had no symptoms and my bloodwork, liver enzymes and tumor markers were normal. My appetite was strong and I was running 4 miles three times a week. I can live way too close to the edge with no symptoms and wouldn't personally feel comfortable without scans. One can only go so far before even an effective treatment can't catch up. I no longer trust my own sense of "danger" as my threshold for pain, discomfort and physical challenge has grown so high. What feels "normal" to me is probably heavily skewed at this point.

Also, although the doctors in the article write about how patients don't necessarily need scans, I suspect if it were their spouse with cancer, they would be insisting on regular scanning unless the spouse was NED for years.

ADDK

I have opted out of scans, which are offered every 9 weeks for MBC in Denmark (public healthcare). I have this "body phobia" meaning that even listening to people talking about body stuff makes me either faint or cry. During visits to the hospital, I instruct the staff not to chat to me about what they are doing or seeing. During blood work etc. I place paper tissues over my eyes – yep like a five-year-old: What I can´t see isn´t there :-)

I have skin mets, i.e. the progression is visible (I don´t look at it anymore), and according to the doctors all available treatments have failed me. So all things considered it was fairly easy for me to opt out of scans, the hospital staff seems appalled about my decision, though.

exbrnxgrl

I think I hold the minority view regarding scans and overall monitoring. My mo operates in a manner very similar to LoriCA’s. My mo does not do tumor markers, but will not hesitate to do a PET if necessary (I have no co-pay). I am in my 8th year of living with MBC and am glad that I scan much less frequently now, but I’m definitely a less is more kind of person.

Some consider my approach too passive. I think people are comforted by frequent scans, tumor markers etc, because they feel as if their doctor, and by extension themselves, are doing “something”. However, if you evaluate the pros and cons of frequent scanning then each of us will arrive at what feels most comfortable to us.

** Disclosure: My bone met was discovered incidental to a scan unrelated to bc. You would think this would make me a supporter of frequent scanning, but no, I still don’t want the additional stress and radiation exposure

Sadiesservant

Interesting discussion. Thanks Bestbird.

This issue has been top of mind for me since I was diagnosed. My MO also uses more of a wait and see approach with scans, preferring to order scans based on our conversation at our three month check ins (or when I reach out to him if something is going on). If I have symptoms he scans. If not, he tends to leave it. At the moment I am doing well on Faslodex and when I saw him in December there was no mention of scans (last CT was the beginning of October). He also only typically orders scans of my chest, sometimes chest and abdomen, rarely my hips even though I have extensive bone mets in my hips and lumbar spine.

I'm of two minds regarding his approach. The logical part of my brain understands that, unless the cancer is very aggressive, finding progression immediately likely does not change the outcome and, in fact, can do more harm than good if it leads to rapid cycling through treatments. I had evidence of bone progression shortly after being on Arimidex but my MO sat on it for a bit given that my sclerotic mets are difficult to differentiate from healing. Now that things are stable and I seem to be responding well to Faslodex I am not overly fussed about frequent scans.

The other part of my brain, the panicky bit, wanted the scans on a regular basis. In my case, TMs appear to be useless (I think at their highest they were 43 while most with my burden of disease would be in the 100's) and bone scans are not much better. Recently my RO commented that my bone scan could have been hers but when they look at my CT they go 'Whoa, is this the same patient?. So really, CT has been the only way to figure out what is going but even CT is not perfect given the nature of my pleural/peritoneal mets which are difficult to follow.

However, having scan timing determined by symptoms has created challenges for me. After early progression I was dealing with a number of symptoms including ongoing shortness of breath, abdominal discomfort which we attributed to the spread to the peritonium and bone pain. These symptoms resulted in frequent scans that invariably came back as stable. That was certainly good news but caused me a lot of stress, not from scanxiety, but rather from the sense that I was becoming neurotic, imagining ever twinge was cancer and costing the system a fortune. It didn't help that these scans were ordered as urgent (possibly an issue with our system in Canada). All this to say that I would have been much happier and far less stressed if scans, from neck to hip, were scheduled on a regular and predictable basis. If I have an issue I can then decide if it is warranted to consider moving the scan up.

Ultimately, like everything with MBC, it seems to be highly individualistic. I don’t think there is a one size fits all answer and hope that is not where that study will lead.

Pat

DivineMrsM

Yes, great topic! Thanks for the link to the article, Bestbird; it was a good read.

Oh I defnitely hate frequent visits to the oncologist. I have entered my ninth year since being diagnosed with mbc from the start. Since the 1st year in which I had the big treatments, I've been stable while taking Arimidex. Scans twice a year and zometa iv's four time a year the first few years were reassuring to me.

I became one of those exceptional responders after five years. Still, the oncologist kept ordering scans twice yearly and zometa every three months. It was just a continuous reminder that I was “sick".

Finally, last year, I asked for yearly scans and for zometa only twice a year. The onc was rather hesitant but okayed it. I was soooo happy not to have two scans in a year and to get the zometa twice yearly instead of four times. It made sooo much difference. It really freed my life up. I'm a pretty tough cookie, but I definitely had the underlying anxiety—not even that I would have progression—but due to the the frequency of having to be in the hospital environment and having to interact with all the medical personnel.

In other words, less scanning/monitoring for me means better quality of life.

Something that hasn't been mentioned here yet: the worries that too frequent scanning could create new problems or disease and too much zometa could result in jaw necrosis. As the saying goes, I guess you gotta choose your poison.

Plus, yes, after all these years, there have been costs to contend with. Even with good health insurance, it's been nine years of co-pays and deductibles, and they only go up, not down. It's several thousands of dollars a year on top of what we pay for the health insurance. I'd love to have that $25 copay or even the $300, Pajim!

I guess it depends where you are at in dealing with mbc. As Sadie says, its individualistic. I was very encouraged by women on the boards who've been around for years with mbc who were fine with less monitoring from their doctors.

DivineMrsM

Another aspect of this, and yes, it is a cynical view, but hospitals and facilities love having their imaging machines used because it means profits for them. It is my belief that there is probably a quota, or amount of scans these places expect their affiliated doctors to order. No, it may not exactly be a written rule, but I believe the pressure is placed on the doctors to make sure those machines get consistently, continuously used.

Goodie16

Like, many on here, my MO has taken a wait and see approach. I have tumor markers drawn every 3 months and see my MO to discuss results. If TMs are low/unchanged we schedule a follow-up appointment for 3 months with the same procedure. I have an annual PET/CT. If any new areas and/or progression was found, we would change treatments. I have been NED on arimidex since April 2015.

I see my neuro-onc currently every 6 months (down from every 3 months last year). I have a brain MRI and appointment with him in the same day. The plan is to zap any spots he sees, but so far no new spots.

My neuro-onc and MO are in communication and share test results. I'm comfortable with this approach as it allows me to live as "normal" as possible. My MO has taken my case to the tumor board on several occasions as I'm considered a bit of an oddity. I'm and oligo, but my only site of a met was the brain.

Bestbird

The diversity of insights and opinions in response to the article is highly illuminating. There are some aspects I hadn't previously considered, and as a result, I'm thinking of adding the following paragraphs to my Insider's Guide which reflect multiple concerns and approaches. Any suggestions or additional feedback are appreciated!

Disease monitoring for progression can be stressful on MBC patients, since it frequently causes anxiety (often referred to as "scanxiety"). According to Dr. Accordino, Assistant Professor of Medicine, Columbia University Irving Medical Center, there are data showing that finding progression immediately when it occurs is not associated with better patient outcomes. Furthermore, doctors may order tumor marker tests and then not do anything with the results - they still order scans on the same schedule they would otherwise have used. So the question is why the physician is putting the patient (if the patient is asymptomatic) through all these tests and giving them scanxiety if the physician is not going to change anything based on the information. From: https://www.onclive.com/web-exclusives/study-addresses-breast-cancer-monitoring-burden-on-metastatic-patients?p=1 Depending upon the type (if any) of medical coverage, tests can be expensive for the patient.Furthermore, certain types of scans expose the patient to radiation, and they can be detrimental to specific organs.Two examples are Contrast Induced Nephropathy (CIN) which is a kidney disorder that occurs in about 2% of patients who undergo CT scans or angiograms that use contrast dyes, and Nephrogenic Systemic Fibrosis (NSF) which is a rare but serious disease affecting skin and other organs that has been found in some patients with advanced chronic kidney disease after exposure to gadolinium-containing contrast dyes that are used in magnetic resonance imaging (MRI).

When the author solicited patients' opinions about the above, one patient responded that although she had been asymptomatic, she underwent regular scans, one of which revealed a few new spots of metastasis in her bones which were subsequently radiated.She stated that even if the measures did not stop further progression, the radiation may have averted deterioration in the bone and possibly prevented bone pain.She also raised the possibility that the new spots may have been comprised of newly-mutated cancer that the radiation prevented from spreading any further.Another patient responded that her friend's doctor scanned her every three months and would change her treatment every time a scan showed the slightest progression. As a result she has run through almost every option in a very short time and now regrets it.

Given the above perspectives, patients should carefully discuss with their medical teams the types of scans they should undergo and the frequency with which they should occur - while weighing the pros and cons of various options.These decisions will need to be revisited if and when the patient's status changes.

Frisky

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I'm greatly enjoying this smart exchange of opinions and experiences regarding our disease and corresponding TXs. Thank you Bestbird for initiating it.

I'm somewhat in the middle ground, I recognize that I HAVE to undergo the tests and take the mostly useless and damaging medications since there are no real alternatives. At the same time I foolishly believe that I’ll be the lucky one and they will work for a very long time. Studies, statistics and the experiences of the majority of women on this board, however, point to similarly drastic results.

I'm currently on xeloda and I'm not sure I will choose to undergo additional chemotherapy. Like all of you, I hope there's a real breakthrough by the time the X [ which I adore] stops working.

I have been however protecting myself (liver, kidneys, brain) as much as I can from the devastating effects of the hormonals and current chemio with alternative TXs that I’m familiar with and believe in, and so far so good. But we all know that situation can change on a dime.

I do feel better and stronger now with x, then when on letrazole and ibrance.

I have been proposing to my MO at MSK to be scanned less frequently, but they have their rules and they have to make money. At some point I will have to make a decision regarding my futureTX's, but of course, I hope that day never comes.

I learn so much from reading and partecipating on this board. Thank you all for sharing your insights and experiences, may you be blessed with a long and pain free future.

Bestbird...thank you again for the knowledge youshare...

pajim

There's one other thing to consider. It's likely that women who are in the early days, doing fine on hormonals, need fewer scans then women who have progressed (or started TN) and are on chemo. Those cancers tend to be growing faster and there's less margin for error.

So it could be said that the need for monitoring via scans will change over time.

ShetlandPony

Reading the article, my first thought was that the researcher wants to have confirmation that reduced scanning when markers are not rising and there are no symptoms, can be a fine or better option for some patients than regular three-month scans. But my second thought was, wouldn't insurance companies love to have the standard of care changed so they can deny scans, and that this would be bad for patients. The researcher is quoted as saying, "The outcome is overall survival, but we are also looking at cost of care, patient-reported anxiety, and quality of life (QoL)"

I think it really does need to be an individualized decision, taking into account the character of a particular cancer and the patient's history: Does this cancer tend to progress slowly or quickly? Does it show well on scans? How accurate are tumor markers for this patient? Do blood tests (e.g. liver enzymes) show trouble brewing, or do they show normal range even when there is a problem? Would a small progression pose a danger (a bone met that could result in fracture, or liver mets that could get out of control without quick action)? Is this patient at higher than average risk of harm from contrast agents or radiation? What causes this particular patient more anxiety, scanning or not scanning? Would the oncologist consider, in certain cases, not changing treatment whenever a scan shows slight progression? I agree with the points Cure-ious makes about earlier detection, and believe that earlier treatment can result in better quality of life and/or improved survival. Statistical averages don't or can't always tell the whole story.

It happens that in my case, for the past twelve or eighteen months* my onc and I are doing as Dr. Accordino does, and not scanning until rising tumor markers or symptoms. We did not make this decision based on a study, we made it based on my individual history. For about the first three years of mbc we did a PET-CT every three months, and CA 27.29 tumor marker every month. During that time we learned to trust my markers (very accurate), and that they are ahead of the scans; that is they indicate progression or improvement before a scan shows it. I also learned that I can feel when my liver is up to something, and that my liver enzymes will not show it. We know that this cancer has not tended to move fast, but slow or medium. One day I asked my oncologist whether my germline mutation in a mismatch repair gene might mean I am at more risk from radiation than most patients. She said that was unknown, but after that was when she started scanning less. I also worry about the possibility (under study) of cognitive effects from the gadolinium contrast for MRI, as I feel that after seven years of various cancer therapies my memory and word recall are not what they used to be, and my current chemo does cross the blood-brain barrier, so maybe that means I am at greater risk of cognitive effects. I am comfortable with our scan approach, as my lack of symptoms and my low normal tumor markers indicate no evidence of active disease. I also am glad to know that if I ask for a scan, my onc will order it and expect insurance to approve it. For me the need for monitoring via scans has changed over time, as pajim says.

(*A few months ago I did have an abdominal/pelvic MRI requested by my gynecologist, so I coordinated with my onc and we just looked at everything we could with a non-contrast study.)

Frisky

That was a very wise analysis and soluShetland! The best of all possible worlds!

GG27

I think that the trial protocol for scanning every 8 weeks for the first 6 months is to boot you off if you have any signs of progression. I can't imagine any other reasoning for scans that often. I'm not happy about so many scans but I can't afford the $1,300 per month for fulvestrant & it isn't funded in Canada.

dorimak

This is a really good topic for discussion. I echo what ShetlandPony says in that I do think it's so individual especially with tumor grade and extent of mets (and maybe location). There are so many variables. Long story but I have had three MOs since I started three years ago who differed on approach to scans and TMs and I'm still not sure where I personally land on this issue. It's unfortunate that the TMs aren't a good predictor for all of us. Mine have tended to jump around a few points above or below normal. I had been stable on Femara/IBRANCE and my disease was limited to an area under my sternum and a small area on my lung so second MO was more inclined to go six months. He had some concern about the amount of radiation exposure. He also explained that the treatments were like ammo in the barrel of the gun in that you burn through them over time. I have to admit it was nice to go the six months without a scan especially when the one last April showed progression. Current MO does every three months and I've since been on Faslodex and now on Afinnitor and Aromosin over the last eight months. Second MO who had started me on Faslodex said he's had women on it for years and yet after if failed me on second three month scan my current MO said it's typical to just get a short run with it. It bothers me how MOs can differ so much but on NP admitted that it's a bit of trial and error with MBC. For all the fundraising that goes on for BC, there is little or nothing that goes into MBC. It's disturbing that they simply don't know why it behaves the way it does and why it can go decades and rear it's ugly head sometimes very agressively. There needs to be much more research in this area.

Nkb

This has been really interesting to read people's take on this. It really shows the "art" involved in medicine and how our MOs are all trying to figure this out. I had no scans after initial treatment for Stage III C ILC- was on Arimidex only for about 5 years. I was told that there was no advantage to detecting MBC early- to wait for symptoms. I don't know when the bone mets and bone marrow mets actually occurred- I was severely SOB on a hike and had a HGB of 7.5- that led to the discovery. Perhaps if it really started 2 years earlier and frequent scans would have picked it up- but, I may have not have been given Ibrance- maybe would have burned through a bunch of treatments. Who knows?

After the MBC diagnosis I had scans every 3 months times 3- then at 4 months. My MO told me if all stayed stable I could wait a year for another scan. I was shocked and a bit worried. But, she said that I had such a good response and she has so many patients on F/I for 3-4 years that she thought the monthly lab and TMs was enough unless I wanted a sooner scan or felt bad. It's been 9 months since then and I find that I am less worried and consumed. Yes, a stable scan made me happy- but, only for a short while- then I started worrying about the next scan. I felt like I could get off that seesaw a little. My TMs are super high- they went down about 40% with I/F and now bounce around- now they are heading up again and I will have a scan- If it is a small progression I hope to deal with it with radiation and stay on I/F as Cure-ious has planned.

My MO did mention that studies have shown that too much surveillance is psychologically damaging to people- but, she would go with what I wanted to do also. Since I am kaiser- I do not need insurance permission, and no co-pay for the scan, I get PETs due to her preference and my allergy to CT dye. In the back of my mind I see all the comments about scans not being accurate esp if you have ILC- hard to hang your hat on any one approach. TMs are a crap shoot too for many.

Heidihill

I was NED after 5 cylces of TAC chemo so my experience is different from most. I always preferred to swim in the river of DeNile for as long as I could between scans as I have both scanxiety and regular anxiety being claustrophobic in those machines. So I doubled the length of time required if I could. Three months turned into 6 months, 6 months into a year, etc. My last scan was 3 years ago because of nerve damage from a neck injury. I am also a hard stick so about 5 people had to give it a try before they had to call the anesthesiologist from the operating room. Plus I was allergic to the contrast. 

While I procrastinate I try some "alternative" therapies on the off chance of killing cells before they can show up on imaging. Once I took aspirin daily, another time it was metformin, then it was broccoli sprouts, heat therapy (as in exercising in my steamed up bathroom), getting a massage, acupuncture, walking in the forest (forest bathing), intermittent fasting, etc. When I didn't get scanned, I got mammograms, lung x-rays and abdominal, breast, axilla and thyroid ultrasounds instead.