Follow-up diagnostic tests for potential mets???

[Joanne S]

I am very thankfull and pray for my cyber-HER2-Family.

I had my last Herceptin (1 year) yesterday. (Yeah!---but some mixed feelings, you know. )

I spoke with my oncologist who informed me that she does not do any follow-up diagnostic tests such as CT Scan, MRI, etc. to check for possible recurrence once chemo treatment is completed---only follow-up office visits with her.

As you probably already know, I am stage III with 6 of 16 positive lymph nodes. Oncologist explained that if I get symptoms in the future; she would then prescribe diagnostic tests to check for for possibility of recurrence.

I absolutely love my oncologist and had no concerns up to this point. I don't agree with her follow-up method. I feel I should be able to get diagnostic follow-up tests at least once or twice a year. She believes that it doesn't make any difference if the mets is found early or later with obvious symptons. I don't agree. I believe if it is caught earlier, treatment can be given to potentionially stop further cancer spread.

I did manage to talk her into giving me a prescription this one time for a CT Scan (chest, abdomen and pelvis) and MRI (brain and neck---I have a pinched nerve in my neck). I plan to schedule these in January.

How does this method of follow-up compare with your experience after finishing Herceptin?

Thanks for you input :) :) :)
Happy Thanksgiving !
Jo
---

[PinkGirl]

Hi Joanne S

That seems to be the way it goes for many of us. My onc also says that there is no benefit to long term survival by finding mets early. He will give me tests if I have symptoms.

This is a hard one to swallow for me. It doesn't make sense that finding mets when they are small isn't beneficial. But I have been told this from many doctors and have heard from many people on this board that they've been told the same thing by their oncs.

My onc did say to me that he would order tests for me if I really needed them for my peace of mind.

[Margerie]

Joanne-

We had quite a lengthy debate here on the boards a few weeks ago about survellaince after initial therapy:

http://her2support.org/vbulletin/showthread.php?t=30555

I have been scanned routinely after treatment (tumor markers too) and this is in my comfort zone.

[AlaskaAngel]

Hi Joanne,

If I were stage III I would not be comfortable with that and would seek more frequent monitoring by imaging and/or markers and blood tests. As a stage I HER2+++, I did not even have to ask, and had them every 3 months for the first 2 years and then every 6 months for the next 3 years.

The average cancer doubles every 100 days. It is common knowledge that most bc is not palpable until it is 1 cm. So I think that stacks up pretty tall against the philosophy of "waiting".

A.A.

[Chelee]

Joanne, It seems many women's onc's all say no scans unless symptoms. I believe the sooner you find mets the better...and there is nothing they can say to me that can change that. That's just my feelings/opinion on it.

I'm sure my onc would rather put off my scans too but I will not let them. I'm a stage III'er with 5 positive nodes and I want and get my scans on time. They don't even bother trying to stop me. It is stressful going through the scans and waiting for the results...but for me personally...it gives me peace of mind.

So Joanne...since your stage III with positive nodes like I am...I would certainly do what YOUR comfortable with. If you want the scans I don't think they can deny you. There is no way I could relax if I just sat around and waited till I had symptoms. For me that would be impossible. I have PET/CT & brain MRI every 6 months.

Chelee

[Joanne S]

Thanks for the link Margerie!
Joanne S

[dhealey]

My onc feels the same as the others, no scans until symptoms show up. The doctor I work for (family physician) feels otherwise, so he has ordered the scans. My insurance has agreed to pay for them. I will be having a PET scan after I finish my herceptin and a Brain MRI in Jan. to follow up on a pineal cyst on my brain. If nothing else it will give me peace of mind. My mother lost her life to this horrific disease after an eight year battle. Same stage as me. I intend to do everything in my power not to. I was about 5 years younger than her when I was diagnosed and as I am told by the doc I work for, puts me at an even higher risk.

[Joan M]

Hi Joanne,

How much follow-up seems to depend on the doctor's philosophy.

I had regular scans.

I was Stage II, I'm now Stage IV.

When I as Stage II, my oncologist said it's not b&w. She said she had to watch me closely -- scans and tumor markers -- because I am HER2+, ER-/PR-, Grade III tumor, 7 positive nodes.

She said that if I had been a Stage I, ER+, HER2- cancer patient with negative nodes she might not even do tumor markers.

I've had several bone scans, Ct scans, PET/CTs, and an MRI of the brain. Almost all of them without presenting with symptoms.

On the other hand, I consulted with an oncologist at MSKCC when I was still Stage II, who said that Stage II follow-up for him is only tumor markers, no scans.

[hutchibk]

I agree with Chelee completely and my onc does too, for many reasons. I posed the question to my onc last month and here is his opinion: Is there a survival benefit to monitoring and attempting to diagnose metastatic disease at it's earliest, rather than waiting for clinical symptoms? Unequivocally, YES. In 20 years, he has seen multitudes of lives positively extended due to the earliest possible DX of mets. When they are smaller and more contained, they are easier to treat, easier to combat and eradicate, and come with less collateral damage and less additional medical complications than if found later when more damage has been done. With the earliest possible DX of mets, treatment options can often be less invasive, less aggressive, and very often yield the best possible outcome. That speaks multitudes about positive QOL as opposed to the difficulty to QOL that can be caused by more aggressive and more invasive treatment options. His example was "why would you NOT monitor (scans, labs, etc) for bone mets and instead wait for symptoms? How would it NOT be better to DX a hip bone tumor met early and eradicate it, than to wait for a broken hip to tell you that you had a tumor that disintegrated the bone and caused it to break? Then you have a tumor that is bigger and might have broken away and continued to spread. Then you have a problematic and expensive hip repair surgery, which may not even be an option. Then you have a patient who is potentially in a wheelchair for the rest of their life. Then you have tremendous pain issues. Then you have a patient who's overall health, well-being, and well-survival potential is tremendously compromised. And on the flip-side, an early DX of the same hip bone met could avoid most, if not all, of those issues. Of course there is a significant survival benefit to finding it sooner rather than later. (And using me as an example... in my case we were able to use a new and less invasive treatment option as opposed to whole brain radiation, because my mets were found extremely early and very small and had not yet produced symptoms. Had we not found them until they were causing symptoms, I would have faced the much more expensive and more physically difficult probability of targeted rads or WBR... Additionally, we have knocked back the same mediastinal nodes twice now due to the assistance of rising markers and earliest possible detection.)

I would also like to take this opportunity to share what one of the docs at the Metastatic Breast Cancer Conference at MD Anderson last weekend said... (Dr. Buzdar) - the question was asked about any benefit to finding mets at their earliest through scans, etc... and he stated that they are starting to see evidence that the smaller the mets are when found, and the earlier that they are treated, the potential appears to exist that certain treatment regimens may be able to change the biology of the tumor. He believes that that speaks to a huge benefit of finding mets earlier rather than waiting for symptoms.

[CLTann]

There is absolutely no scientific support to wait for symptoms to fully develop. These oncs are living in stone age. They are ignoring the well being of their patients. It is no different from discovering the bc early, which we all know helps the prognosis of any bc patients. I would drop that kind of doctor and find a better one.

[madubois63]

After finishing treatments for my first bout of bc (stage IV/Inflammatory bc), my onc continued to do tumor markers every few months. There was no diagnostic testing being done. I now know and wish differently. I didn't get the tests until after I was sick (weak, coughing...). The bc had returned to my liver and lung. If I had gotten regular PET or CAT scans maybe it would have been found before it went to the lung or before it went to the liver, making the fight a little easier? Maybe I would have gotten a less intense treatment and not gotten leukemia? Who know's??? I now get some scans every 3 months and the bone scan and brain MRI every year. If the insurance has a problem with it, I have a "headache" or a "back pain." I personally would not go without the scans knowing what I know now!!

[PinkGirl]

DOES ANYONE KNOW WHY DOCTORS SAY THAT FINDING METS EARLY IS NO BENEFIT TO LONG TERM SURVIVAL????? I don't get it......1 cm vs. 10 cm. It just doesn't make sense to me, but I have heard this from several doctors and have read it in many articles.

[hutchibk]

Just to highlight this again, that I learned last weekend:

I would also like to take this opportunity to share what one of the docs at the Metastatic Breast Cancer Conference at MD Anderson last weekend said... (Dr. Buzdar) - the question was asked about any benefit to finding mets at their earliest through scans, etc... and he stated that they are starting to see evidence that the smaller the mets are when found, and the earlier that they are treated, the potential appears to exist that certain treatment regimens may be able to change the biology of the tumor. He believes that that speaks to a huge benefit of finding mets earlier rather than waiting for symptoms.

[PinkGirl]

Thanks Brenda. I still don't get it.

What circumstances could there possibly be
for it to not be advantageous to treat
a small tumour vs. a large tumour?

With or without the new findings, would a small
tumour not always have been easier to treat
than a large one??? I really don't get this
but I'll try to forget about it for fear that I
might drive everyone crazy with my repeated question.............

[Andrea Barnett Budin]

It all comes down to cost. Will the insur co pay? When I had 3 comprehensive bld tests that showed slightly elevated liver enz, which was not so for 3 yrs prior, I kept questioning it to my doc. I wouldn't worry. 3 mnths later. I wouldn't worry. It could be coming from my choles med. Anything. 3 mnths later (now 6 mnths from red flag) same scenario, but this time I said WELL I AM WORRIED. Can I have a liver sono? You mean an abd sono? Ok. Well... I guess we could substantiate that (which is doc talk for WILL THE INSUR PAY?). So I had the sono, was sent for a CT, cause they couldn't be sure what they were looking at. Then sent for biop. Then told what I had was "inoperable, incurable, and I would be on longterm chemotherapy for the rest of my life".

When my husband had Shingles, became dehydrated and developed orthostatic hypotension (3 diff bld press, sitting, standing, lying down) he kept collapsing in to unconsciousness. 1st X he broke his ft. In the emerg rm they weren't interested in his ft so much as his brain, which was good. They did a brain CT. I asked why a CT, not an MRI? MRI is more expensive. They do the CT. Then, if more info is needed, they do the MRI. Which is exactly was occurred. 2 tests instead of one, hoping to *save* $. This is the thinking process of no CTs after initial bc dx. Same thing. All about saving $.

Every woman should have at the very least a transvaginal pelvic sono many say, to prevent ovarian ca, as we do mammog to detect bc. But insur co's won't pay for pelv sono, so... That needs fixing too!
Andi

[PinkGirl]

I think I'm starting to get it. We are talking about
averages, per centages. Early detection of mets
might help some, others not. They average it out,
and the overall decision is based on $$$.
Am I getting it right Andi?

[Andrea Barnett Budin]

Pretty much, Pinkie. Sad. But true. How many lives would be saved if women got annual transvag pelv sono? Do they carry it to what the cost of tx for ovarian ca is? I don't think so. Short sighted. Insur co's aren't into preventative med. Which would save mega bucks, I think...

Bc brain mets occur assymptomatically. So some oncs do brain MRI and write headaches or confused foggy thinking, to substantiate the cost of doing the test.

Last yr my insur co pre-certed my brain MRI w/o contrast only, though scrip order written for w and w/o. When questioned they said IF something is found then they will pay for me to go back and have a 2nd brain MRI w/contrast. Well results were nothing remarkable but "very difficult to see met disease w/o contrast"!. Catch 22. I could have *appealed* their decision. Doc decided w/me if brain mets were to occur it would have happened sooner rather than later. I'm pretty far out. So, we let it slide. Some could choose to fight it. But if you are busy, and weak, and disheartened, and overwhelmed -- you don't have the strength to fight the insur co in addition to the ca. Sucks doesn't it???

Andi


Andi

[hutchibk]

My doc didn't indicate to me that it had anything to do with $$, he indicated that it is a philosophical controversy. I guess it could have something to do with $$, too, but, I would contend that treating a patient with more aggressive therapies after a larger tumor is found, (and having to treat the aftermath, medical complications due to, or side effects of the tumor, e.g. related critical care due to invasiveness or location of tumor) is bound to be a lot more expensive in many ways than regularly scanning and treating early mets.

[Chelee]

Andi, Thank you! I've been saying that for a long time and many do not believe that is what's behind it. Just like my onc has tried several times to talk me into JUST a CT scan of my brain versa's my regular MRI. I told her no! A CT scan is about $500.00 & a MRI is $2000.00 plus in many cases...big difference. I know its all about the money. No one has to agree...but that's my opinion. With managed care these days its all about "profit over patient" sad to say. They want the doctors to keep cost down...so trying to talk us out of our scans is a good way to do that. I believe the insurance companies really put the pressure on our doctors to tell us their not necessary unless we have symptoms & its so wrong. Our health care system needs a major over haul and has for a very LONG time. JMHO.

Chelee

[Joanne S]

Just as my gut told me, I will make a point of getting regular follow-up diagnostic studies. Thanks everyone --- I appreciate you sharing your experience and knowledge.

I plan to have my brain MRI and CT scan of chest, abdomen and pelvis in January. My oncologist, Dr. D, is planning to switch to another office location, In turn, it'll be the perfect time to switch to another oncologist in the office, Dr. B, who also specializes in BC. After inquiry to some patients I've met during chemo in the same facility, I learned that Dr. B believes in checking tumor markers and follow-up scans. I will try to set up an appointment with her in January to go over my CTscan and MRI results and to ask her to check my tumor markers so I'll have something that can represent my baseline---I've not had any tumor markers checked previously.

[Chelee]

Joanne, I'm glad your going to ask for your scans. I get a PET/CT every six months...in fact I'm a bit past due right now & I noticed my onc didn't bring it up at my last two recent visits to her. She hopes I won't notice its time. lol It sounds like Dr. B will be easier to deal with since he believes in scans and markers. I know my oncologist...and many other don't want to do tumor markers either since they really aren't always reliable. But I have my onc run them anyway. She rather not do any of this but if I ask she does it with no problems. But I *have* to ask every time. When you were first DX did you have baseline scans? PET/CT of body and brain MRI? Maybe if you wait till you switch to Dr. B you can have a PET/CT...verses just the CT? (Just a thought.) :)

Chelee

[Joanne S]

Good point Chelee,
Thanks for bringing this to my attention!

When I was initially diagnosed, I had a breast MRI, CTscan, and bone scan. I have had a couple CT scans since my initial dx.

I've never had a PET Scan. I'm not sure what the difference is between the PET Scan and the CT Scan is. Perhaps, the PET shows more detail?

From what my onc told me, some tumor marker tests can give false positive or false negative results---she does not order those---in my opinion, those tests would just give me something else to worry about needlessly.

I will discuss all of this with Dr. B in January.

In addition, since my mother died from breast cancer 11 years ago, and I have two daughters (ages 17 & 22), I plan to inquire about the BRCA tests. Unfortunately when my mother was diagnosed at Stage IV-mets to all the bones 13 years ago, I didn't even know (or have any clue) to ask so I never found out what kind of BC she had. She never had a oncologist as she refused Chemo and radiation as not an option for her. She survived 2 years on just Tamoxifen and morphine with her very strong fighting attitude---very negative and angy about BC. She fought it tooth and nail because she did not want to die.

[Emelie]

I go in on Dec. 5th for my first 3 mos check-up after stopping Herceptin. My onc said she wanted to do the HER/2 serum tests at each visit. No mention of scans. I had a large tumor and 6 of 9 nodes positive. I would definetly feel better if I got a PET scan and a brain MRI. Do I just need to insist on it? I have not had any scans since my initial DX.
So glad to hear that I am not alone in wanting to scan to assess my health.
Thanks,
Emelie

[tricia keegan]

My Onc does'nt believe in doing tests or scans as follow up either although always maintained if I had persistant symptoms she would. I had a bone scan last Jan for severe bone/joint pain which thankfully was clear so must be down to arimidex.
I was amazed though when I saw her last week, still complaining of the same pain to have this dismissed as "arimidex" related and "menopausal symtoms" and no scan or further tests ordered! This has left me feeling shaken and have lost confidence in my follow up care.
I do think myself this pain is ongoing from arimidex but expected to be taken seriously as a cancer survivor rather than be dismissed as hysterical and menopausal. She only suggested I increase my glucosamine/chondroitin and see if that helps. I'm now left wondering what will happen in the future should I have some worrying symptoms and whether I'll be taken seriously!

[Andrea Barnett Budin]

In Aug '98, when I met into my liver (multiple tumors) it was discovered then that I was HER2+ 80%, having been initially dx in '95, post menopausal age 50 ILC (more aggressive than ductal) w/2 out of 21 nodes involved. Now my fav onc (of 5 -- NY and Boca) took charge. Various recommendations for chemo but he wanted Taxotere. Why? What you have is a highly aggressive form of bc and T is the most aggressive weapon we have in our arsenal. I began T in Sept '98.

Herceptin was fast-tracked out of clinical trials as women in the genl population w/4th stage bc and told they only had 3 mnths to live could not gain access to H, but through a *lottery* system. Very limited supplies existed and were in trials at Sloan K and Boca (at my fav onc's office), only 2 places in the country then. Sept 28, 1998 H became available to the genl public. I was able to add it to my protocol as of Nov '98. TIMING IS EVERYTHING. I also began my major supplement regimen at that time, under the guidance of my oncological nutritionist who I lovingly refer to as my nut onc, as a dear Sister pointed out that he was.

Fav onc had me on ev 8 wk CT scans (chest/abd/pelv) w/ and w/o contrast. At the end of May '99 I was proclaimed in *cautious remission* by 2 out of 3 radiologists, and began H only, then wkly. In '01 I switched to the triple dose ev 3 wk plan.

Fav onc insisted I get ev 8 wk CT scans, per above, for over a yr. Then I graduated to ev 3 mnths for over another yr. Then I begged for ev 4 mnths b/c the contrast makes my IBS act up for 3 days following scans and I was chained to my toilet. He acquiesced a bit reluctantly but was firm that I could not go any longer between scans. It is only about 18 mnths ago that I was told I could go ev 6 mnths.

I'm told PETs aren't necessary for me. I know my TMs did not show elevation until mnths into Taxotere, mnths after dx recurrence. I still get TMs ev 3 mnths, knowing we can't rely on them in my case, but derive pleasure and encouragement in seeing that they are low, in the normal range, yet aware it is a false sense of security I am deriving.

I hope my experience can clarify your thinking in this cloudy area. I still hold my breath w/ea CT scan and get SAME DAY reports, often hrs after returning home. Paul and I seem to need this for our sanity, and we have made it a point of having our onc request this each and every time. When his nurse calls me and sings out -- Where do horses live? S T A B L E ... We laugh. Paul tears up with relief. And I thank God, all my oncs, my nut onc (who has given me my supplement list, meditation and guided imagery skills, my surgeons, my nurses , my husband and family and my Sisters, Christine and Joe). It takes a village... That's why we are all here.

Offered with love and prayers for every one on this board to join me in the STABLE,
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06