No tests scheduled after chemo is finished.

[msmanuf]

Hi,

I finished all my treatment and was told by my oncologist that they do not do Cat. Pet or Brain scans until some symptoms appear. I told him that is ridiculous. How am I suppose to know if this last year was worth it. Has anyone else been told this?

Thanks,

Mary Jo

[IrvineFriend]

I was told the same thing and find it equally ridiculous!

[LeahM]

Yes, I was told this to and am just appalled. I am so tired of hearing "statistically..." and "...there is problems with putting that kind of radiation into your body..." (when asking about a PET Scan)

First, I am NOT a statistic. I am Leah. I love the outdoors, hiking and my kayak. I have a little girl who deserves to watch her mommy grow old. I may have been diagnosed with BC but I am not a F&*^%$@ statistic.

Second...please don't tell me that you are worried about how much radiation you put into my body after you have pumped me full of chemo and I laid on a rads table 34 times for a total of 78 zaps. Pul-leazzzeee....the peace of mind I could gain from a negative PET scan far outways any risk involved...that is, of course, my opinion but I do feel strongly about it.

That being said...I did have a CT scan of my brain (clear, but I would have preferred an MRI) due to (chemo induced?) blurry vision that has since cleared. And I did have a CT scan of my lungs (ordered by PCP, read by rads onc and now being followed by rad onc) due to shortness of breath. They saw something funky in there and will rescan in June...hoping its just my 40 year old bronchitis prone lungs and nothing else...

However...when Herecptin is over in July I will DEMAND a PET scan. I know my insurance will cover it, I already checked with them. If med onc refuses I will either switch med oncs (most likely scenario) or lie about symptoms.

I am in control here...not the oncs. I recongnize myself...even if they only see a patient...

...and....I'm off my soap box...for now...

This crap just burns me up.
Leah

['lizbeth]

I had a scan after chemo. Have you considered one of the vaccine trials?

[msmanuf]

I called my Dr. today and he agreed to a brain scan and a pet scan. I will continue to ask for them every 3-6 mo. like you I will make up symptoms. This whole lack of procedures makes me feel like I am a lost cause, why bother she doesn't have a very good survival rate.

This whole process is insane. I need peace of mind and I am going to get it one way or another.

Leah I feel your frustration and aggravation with the whole system.

[LeahM]

'Lizbeth if there was ANY trial near me i would do it.

[Lauriesh]

Every 3-6 months is really a lot for someone who is not stage 4. It is one thing if you are having symptoms, but I am stage 4 and I only have scans every 6 months.

I do think it is reasonable to have one at the end of treatment and yearly, if your ins will cover it.

Laurie

[tricia keegan]

I think this is very usual and my onc will only order a scan if I symptoms or pain that has lasted more than two weeks or so.

[hestko76]

Hi, I know I don't respond often but..... I just had my first 3 month check up after herceptin, and my oncologist ordered blood workups and C27/29 test. She infered she can tell if anything is going on by looking at the liver numbers combined with other results. Mine were fine.... but maybe I should ask for a PET scan??

[jaykay]

I asked my onc if she would order a pet scan after chemo was finished and she said no. I asked when - she said 6 months after chemo.

It is ridiculous to "wait" until symptoms appear. Dumbest thing I've ever heard

['lizbeth]

Any of these imaging studies a good fit for one of you?

http://clinicaltrials.gov/ct2/result...=Open&no_unk=Y

[Andrea Barnett Budin]

I hear every one of you Ladies!! Nodding.

In '95 -- 4th stage, mastec, 2 out of 21 nodes involved, you can read my signature for details. In '96 after tx I was told, That's it. I asked, When do I have my next CT? No CT. Standard of care. Seriously???????????

I did get my full blood workup ev 3 mnths. I saved ea report. (I had to ask for copies.) I compared ea to the last.

I made up symptoms in between. Guilty. Don't tell anyone...

In '98 onc said, Everything's fine. Good, I replied. Just -- very slight, very very slight elevation in liver enzymes. I wouldn't worry. 3 mnths later same deal. I asked then, What could be causing that? Always consistently normal. Could be anything. The statins you take. Don't worry about it.

3 mnths later -- deja vous. AND I SAID, WELL I AM WORRIED AND I THINK I SHOULD HAVE A LIVER SONOGRAM. Okay, so it's an abdominal sono. Onc said he could justify that (for the insurance company).

Sono radiologist said he couldn't be sure what he was looking at. He apologized but had to send me for a CT. Waiting for CT results, my onc finally called and said there were some "abnormal" cells and I should come in w/my husband that afternoon. Paul left work early and picked me up.

Doc was shaken. Knew me since '95. Bottom line -- WHAT YOU HAVE IS INOPERABLE, INCURABLE AND YOU WILL BE ON LONG TERM CHEMOTHERAPY, FOR THE REST OF YOUR LIFE.

There were multiple tumors throughout my liver. Too many to count. My CA 27.29 was normal. And continued to be normal for mnths after.

The blood tests give you a window into what's going on. Be alert!! The slightest change -- you respond!!! That's my best advice.

Please read my WHY I TAKE SUPPLEMENTS thread and my WHEN THE MIND SPEAKS, THE BODY LISTENS thread.

I love you all, my Sisters. You are people. Not statistics. Don't let anyone forget that.

Andi
P.S. FYI -- In '99 after 9 mnths of Taxotere, I moved from ev 8 wk CTs (chest/abdomen/pelvis) to ev 3 mnths. For yrs...

Then I begged for ev 4 mnths, cause that drink gave me so much urgent bathroom drama I couldn't take it. Ok, said onc, but absolutely no longer than that. I remained at that for yrs and yrs.

I stayed on Herceptin for 10 years!!!!!!!!!! Been off Vit H for nearly 5 yrs. STABLE.

I was finally moved to CTs ev 6 mnths. And last yr -- to annual... !!!!!!!!!!!!!!!

[dchips1]

there are a lot of women who have stayed on herceptin for years as well as myself. My insurance company decided to nix the pet/ct scans for more often than yearly, and have to fight to get Mri's covered. Their Definition on CNS tumors must come from the Kindergarten anatomy book. I too am a Nurse, but over all these years has open to suggestions I have made, mostly from recommendations from members on this board.!!

Darita

[KsGal]

Everything they said...be really proactive. I asked for a brain scan and PET scan a few months after chemo was over, and was told the same thing your doctor told you. A couple months later I had headaches and ended up with five brain tumors. I have three tumors left, and my doctor is now telling me he wants to wait until they grow to cyberknife them. Im saying, oh heck no. Im not going to wait until one of them grows and there are gosh knows how many more are starting to crop up. Hang in there and be assertive...! Many prayers and blessings to you.

[Debbie L.]

This discussion is so full of emotion that I hesitate to enter the fray. But it seems like someone should make a few points.

The main thing is that IF breast cancer recurs (metastasizes), there is no such thing as "catching it early". We have this early detection thing so drummed into us that it's hard to shift our thinking. But many studies have shown that women who have their recurrence detected by scans or markers (before symptoms) do no better than women whose recurrence is picked up when they report symptoms. That is why treatment guidelines in the US and elsewhere recommend only regular MD visits and history and physicals for follow up after primary breast cancer. There are some qualifications to that rule and I'll mention them below.

Some people read the above and "hear" that there's nothing that can be done about metastasis so why try. That's not at all what the research says. There are MANY things that can be done with great success, especially for HER2+ cancer, but those things work equally well whether the recurrence is found before symptoms herald it, or not. Once cancer has metastasized, most women enter the queue of being in treatment for the long haul. The only difference between those who pick up a recurrence via scans or labs, and those who report a symptom that is investigated and found to be a recurrence -- is that the first group lives with the knowledge of the recurrence a little longer (typically, a few month's difference). They do not live longer, overall.

So the caveats here are at least two, imho. First, each person must be fairly vigilant for said symptoms and not deny or ignore them. A good rule of thumb is that anything severe or anything lasting longer than 2 weeks should be worked up to rule out a cancer recurrence. NOT worked up as a garden-variety complaint (like, for example, doing conservative treatments for back pain to see if it works, before ruling out cancer recurrence).

The second caveat is specific to HER2+ cancer, again just imho. It's about CNS and/or brain mets. Since after Herceptin treatment, brain mets are a little more common, it makes sense to me to do some kind of imaging to watch for this -- as in this case, the earlier the brain mets are found, the more options for radiotherapy there are (this is, again, unlike the situation in the rest of the body where the tumor, pretty much regardless of size, either responds or does not, to the systemic therapy, so size is less of a concern). The issue here, and it's a big one, is that no one has any idea how often it would be best to image the brain in order to make a difference. I don't think there are any official recommendations about this but most oncs are aware of the higher risk of CNS recurrence and should be open to some kind of follow-up.

Back to that "responds-or-not" bit -- we can see the proof of this by reading the signatures of so many women on this list who are living with metastatic breast cancer. You'll see those who had big recurrences in vital organs yet had complete responses and have remained NED for LONG periods of time (perhaps forever). You'll see those who had small recurrences that responded poorly to treatment after treatment, perhaps moving fairly slowly but still relentlessly advancing. And all kinds of in-between. In the body (below the neck) it seems to be much more about biology and response to treatment than it is about size or bulk of cancer. I think that's mostly about the difference between treatment with radiation (size-limited) and systemic treatments. IF we figure out how to effectively get across the blood brain barrier with systemic treatments, this distinction may disappear.

We know that HER2+ cancer tends to be fast-growing. So especially for HER2+ cancers, a clear scan (of brain or body) today carries absolutely no warranty. Which brings us to the next reason women want scans and intense follow-up. For reassurance. Of COURSE women want reassurance, it's very scary to be diagnosed with cancer and then to finish the grueling treatment and learn that no one knows if it worked or not -- that's a lot to adjust to. But the fact is that no one can tell us whether cancer will recur or not. It's a huge uncertainty to learn to live with, and we each find our own way to do that.

Doing lots of tests to "reassure" ourselves every few months is probably not the best way to smooth our way. Mainly because that approach will not save nor lengthen our life. But also because that approach puts us on a roller coaster of heightened anxiety, especially around the time of the scans/labs -- doing the test, waiting for the results, etc -- and all to no benefit.

And lastly, the thing people don't really like to hear but we DO need to consider -- is that it's costly, very costly -- to do the kind of follow-up some are advocating. In our country we spend SO much money on healthcare and yet we have some of the worst health outcomes, when compared to other developed nations. Our technology has far outstripped our ability to pay for it. We (the big societal "we") must do the hard work of deciding what will give us the biggest bang for our limited bucks, when it comes to health care. Doing scans that cost thousands of dollars, just to reassure someone (but not lengthen their life nor relieve suffering) is just not a very big bang. And in theory, it takes resources away from those who very much need relief of suffering or lengthening of life.

Again, I hesitate to send this because I know (from previous discussions, smile) that rather than calming and soothing the emotion in this thread, it may stir things up even more. But I am pretty sure that the strength of this list is in its honoring of both heart and knowledge, so I feel there should be some balance offered. That's all I'm trying to do -- offer some balance. And I'm tough-skinned, you can yell at me if you need to and it will be okay. I know it's hard, especially that time as treatment ends.

Love,
Debbie Laxague

[LeahM]

Debbie, I for one am not upset you entered the fray. Quite the contrary actually as I have spent the last few hours re-reading what you have written and giving it some thought.
I realize that mets is mets is mets, no matter when you catch it, but I do believe sooner is better. If I didn’t have a forward thinking, proactive gyno I would probably still not know I had cancer. If my gyno hadn’t ordered a mammo yearly for the past three years (starting when I was 37) with u/s every six months just in case I turned into one of the one in ten thousand people whose fibroadenoma’s turned into cancer where would I be now? Yes, I feel lucky that my cancer was detected early. Lucky lucky me. So I can’t help but think that finding one small area of mets would be better than finding a large area of mets. But that’s just my opinion.
Personally, I would like that one PET scan and brain MRI post treatment, and of course I want them to be clear. I feel that reassurance will go a long way in my overall anxiety level. But I just want the one. I know having tests or bloodwork could open a can of worms I would rather keep closed. My recent CT scan of my lungs proves that to me. “We aren’t sure what we see, don’t think it’s mets, let’s wait 3 months and look again”. Umm…ok….meanwhile…and I dying??
And you are right…as my treatment comes to an end my anxiety level rises. Has this worked? Will I live to see my daughter graduate HS? College? Get married? Be a grandma? I know we don’t have guarantees in this life but dammit…I want one.
So here is a truth…my herceptin ends in July…and yeah…I want a PET scan and an MRI of my brain…but I want to wait till the fall to have them done. Why? Because last summer sucked and I would like to not repeat it. I would like to enjoy this summer, thank you very much. And hopefully my follow up lung CT in June will allow me to do that.
I know we can never really know what is going to happen next, I know this better now than ever.
Debbie, I thank you for taking the time to respond and explain things in a way my med onc can’t seem to do. What you said makes sense and gives me much to think about
Best
Leah

[LeahM]

'Lizbeth I am not eligible for any of those studies but I thank you for the link.

[chekmark]

Maybe this is a stupid question but I need to ask. I was also told no scans unless symptomatic and only have a blood draw but what symptoms are we supposed to be looking for. Pain, what? Some days I just feel off, is this a symptom? After all the crap they put in us I don't know what normal feels like anymore. I feel pretty good but if I
have an off day I freak out. Before I was dx'd I kept telling my doctors that I just did not feel right, they would take blood,everything would be fine and blew it off as just getting older then I got cancer and they said I probably had it for years so that is why I most likely felt crappy for so long so if I feel slightly off am I having symptoms? I asked what symptoms I was supposed to be looking for and she said lumps, cough, pain.

I hate scans and all the waiting for the news but piece of mind would help us all enjoy life a little better. Every morning I have slight panic attacks wondering if this could be the day. I try to live my life as if I never had cancer but everyday I hear of someone getting newly dx'd, I see someone with no hair in the grocery store,etc. it's impossible to just move on without concern. Pain where? We have aches and pain everyday and I know if it persists for several weeks its a concern but pain can come and go forever, is this a symptom? i had headaches before when I get them now is it a symptom? I really do not know what I am supposed to be watching for. Call me stupid but it is just not clear to me.

[Debbie L.]

Good question, checkmark! In a very general way, I think that vague rule of anything that bothers you for 2 weeks, especially if it's getting worse not better, is not a bad rule. That doesn't mean that it's a cancer symptom, just that it should be checked out to be sure it's not. I'd bet most all of us on this list have had something checked out, especially in those first years, that turned out not to be cancer.

And of course anything really bad, that you'd go to the doctor for anyway, especially pain. Things that come and go, and have always come and gone, are probably just things that come and go. In that category, I'd say the worrisome things are new things -- changes to your new normal. But of course, you don't even KNOW for sure what your new normal is, so these first years will be troublesome. I wish we could fix it all for you (and all of us) so nothing was troublesome, but so far, it just doesn't work that way. Everyone learns different things that help them to manage the anxiety of all this. Some just keep putting one foot in front of the other and find that over time, it all settles down. Other do spiritual work, or physical exercise, or find opportunities to give back -- and find that helps calm them.

I did various things that helped me but I think the best thing was simply to remind myself that my fears could be there and I could still live with appreciation for life. I told myself that yes, it was possible my life would be shorter than I'd previously thought -- that I could die of breast cancer. So, I'd say to myself: "if I have less time than I want in this life, do I want to waste even one moment of it fretting about that, or do I want to live each moment to its fullest?". The answer was usually that I didn't want to waste a moment to anxiety. It's not like I could control the outcome by fretting about it. Sometimes (12 years later) I actually kind of miss that sense of urgency to grab my (perhaps limited) moments.

Here are a few sites that seem reasonable, in their listings of symptoms to report to your doctor.

http://www.mayoclinic.com/health/rec...CTION=symptoms

http://www.webmd.com/breast-cancer/t...rrent-symptoms

As that last site notes, if you think about the places breast cancer is most likely to recur to (bone, lung, liver, brain), you can figure out what MIGHT be concerning. It's not like it's crystal clear, and it's not crucial that you run in immediately in most cases. Local things like new lumps, of course. Bone mets would usually cause bone pain. Lung mets would interfere with breathing, making you short of breath and/or causing a cough. Liver mets could affect appetite and digestion, cause pain, or make your urine look dark or your skin yellow (jaundice). Brain mets could cause a headache or any kind of neurological symptom like numbness, dizziness or balance issues, trouble speaking, seizures, etc.

Feeling "off" is probably not a symptom. It's probably your body still recovering from treatment itself.

Be gentle with yourself. We've all wondered exactly what you're wondering, and been sure every symptom was a recurrence. For some, it was a recurrence. For most, it was not. No one can tell you what lies ahead for you, from a cancer standpoint. You will find the way to move forward in your life, putting the uncertainty into its niche and living reasonably comfortably with that uncertainty. But it takes time, and probably some exploration and work -- to find the best way to make that work, for YOU. Talking it out, as you're doing on this list, can help. You will get there, but in fits and starts, not in one giant "it's all over" leap (alas).

Debbie Laxague

[BonnieR]

Debbie, you have provided an important service here. I have heard this explanation more than once at various seminars and it has finally sunk in. I understand the logic. I happen to have had various scans during my first 5 years in Cancerland because I had symptoms. Once a brain scan for a pressure that was persistent. In that case a big scare came with the finding of multiple abnormal areas. This required a neurologist who determined that the films had been grossly over read and the changes were normal aging. And I think most of you know what happened when everyone overreacted to my chronic cough resulting in unnecessary lung surgery and a misdiagnosis of cancer. This is one aspect of testing without good cause. Often it results in false positives and goose chases. Things get found that are not things! If I am making sense
After my 5 years of routine follow up and AIs, I was declared "cured" ( a word I am not very comfortable with!) without any scans. Because I had no recurrence.
I don't know if I explained myself well enough but wanted to try contributing to the conversation
Keep the faith everyone