Post-Treatment Follow-up Testing

Kerry1000

 

I know that the current standard of care regarding post-treatment follow-up testing for metastasis is not to test routinely, but to wait until symptoms occur.  I understand the studies and reasoning behind this approach but am still not comfortable with it.  If metastasis occurs, I want it found and treated early, before it results in permanently weakened bones or other problems and also have more time to (hopefully) find a treatment that works.

 

I know that I’m going to have to fight my onc. on this one, or find another one who agrees with a more proactive approach.  First I need to determine what I want – a bone scan yearly, or PET scan every one or two years, etc.  I could even pay for a full-body CAT scan at one of those stand-alone profit-making clinics, if I had to.  I know that PET scans and I believe that bone scans as well do have a high rate of false positives, but I’m willing to deal with that in return for the benefit of early detection.  I’m just not sure what the ‘best’ approach would be.

 

I’d like to hear from other early-stage women who are taking a similar proactive approach to testing to hear what they are doing and how they were able to convince their oncologists.  I’d be interested in hearing as much information as you are willing to share so I can make a better-informed decision on this.

 

My own story is:  extensive microcalcifications found on routine mammogram in January, 2006 at age 46 (premenopausal), previous mammograms had been totally clear.  Testing determined DCIS with microinvasion; mastectomy was necessary due to the amount of disease.  The path. report found no invasive tumor but did find micromets in the sentinel node, upgrading me to Stage IIA.  I had chemo, rads and Herceptin (I’m Er/Pr negative and Her-2 positive).  I also had a prophylactic mastectomy on the other side due to 20%-plus lifetime risk of developing cancer on the other breast.  (I’m BRCA-negative but my relatively young age ups the overall lifetime risk).  I’m treated at a NCI cancer center in Boston and believe strongly in advocating for my own health and will do whatever it takes to improve my quantity and quality of life. 

 

I’m sorry friends this is so long.  I appreciate your patience and look forward to your opinions and advice about this topic.

 

With gratitude and love,

 

Kerry

Anonymous

Kerry....I'm actually surprised that I haven't read ideas like yours more often on these boards and will say that I, too, seriously considered pushing for a more proactive, regular screening for possible mets. Gradually, though, as I've gotten further from my time of dx and active treatment, I've become more & more comfortable with the uncertainty and pretty confident that I will "catch" any mets early enough to be able to receive the best treatment. Of course I can't explain why this is so except to say that, psychologically and spiritually, I've just made peace with what I can't control. And lest this sounds naive and like I'm in denial, I will also say that I'm about to have a lung and a liver scan next week to look for mets since I've had a chronic, unexplained cough and one of my liver enzymes was elevated last year. And if I have mets, I'll fight like hell to get them as reduced as possible, but I won't regret not having had regular scans "just in case."

This is, of course, just my take on the issue, Kerry, FWIW. I hope that you can get set up with regular screenings that keep you assured you're doing everything possible to remain in optimal health!

~Marin

Harley44

Kerry,

I have been wondering that very same thing!  How can we try to do everything possible to try to find mets BEFORE bc has gotten to the point where it has spread to every organ in the body??  I worry a lot so I asked my onc "am I just going to worry all the time, that the bc has already spread and it is EVERYWHERE?"   Of course, my onc grabbed me, and said "If you think you need scans, then I'll do them.... let's go!"   I said... "well, I really DON'T want all these scans, ..."  I guess I had thought that if it could be found earlier, then we could begin treatment sooner, rather than later.  But I have read that this isn't necessarily how it works with mets.  So, others have said that I should just be happy that my onc isn't jumping up and down, screaming that I need more scans. 

I have done some thinking, and here is my take on the whole metastasis thing:

If we have microscopic mets, they probably won't show on any scans we get anyway, until we start to have symptoms, and pains.  So, I am agreeing wholeheartedly with Marin, and saying that we will do everything we can to prevent bc recurrence & mets... and, if we should develop any symptoms or pains, we will tell our onc and get any necessary tests THEN...

I think that Marin said it better than I just did...  I think as freakin' scared as I am of mets, I am maybe just now starting to find peace with the idea that IF I do start to have pains, and I get scans, and... I guess I'll deal with it then, hoping that it will be found early enough to get whatever is the 'Gold Standard of treatment' at the time.

I also hope you can get the proper screenings set up, so you can be at peace and know that everything possible is being done.

Harley

ijl

And of course as we don't have enough to deal with this, PET scans themselves add radiation that can cause cancer.

iodine

Inna, that's one of the big reasons I wouldn't want the big scans until I presented with symptoms, increase exposure to rads.

The other is: I want to move on and not let bc control my life.  If I was scheduling lots of evals more than my yearly blood work (not for cancer #'s) and a mammo, I feel I'd be just thinking about it all the time.

I'm 5 years out from a 1.9cm lesion and mast, and I don't want to have bc taking over my life again.

NancyM

I am going to ask for a scan on Monday, my next 6 month checkup.  The reason?  Two of my chemo buddies, triple neg (as I am) both have been recently diagnosed with lung mets.  Come to find out, the peak for recurrance in triple negs is 3 years, not 2 years as my rad and med oncs had led me to believe.  As much as I'd love to put my head in the sand, I want to be pro-active and start treatment as soon as possible if there is something there.  If I remember correctly, one of the chemo pals had said she had NO symptoms when the mets were diagnosed.  If my onc says "no" to the scan request, I'll find a new onc.

Kerry1000

I appreciate everyone's input, and I'd love to hear from even more people if anyone would like to contribute.  My concern as well is that any mets may be asymptomatic for some time - I don't necessarily trust that my body will let me know there's something wrong (not that I don't trust my body...it's just that the problem with many cancers is that they're NOT symptomatic, otherwise they'd be detected earlier).  My experience is that for a few years prior to being diagnosed w/cancer, my body was sending me a pretty strong signal that everything was great! - I was exercising, feeling strong, lost weight, felt energetic, etc.  So I'd like to be proactive as well and request (demand) anannual scan, the question is what sort of follow-up testing would be most appropriate.

roseg

Do you have some aches or pains or something that's making you worry about mets? For many women tamoxifen or Arimidex allows them to breath a sigh of relief and move on more easily. Or maybe they just switch their griping to that.

If everybody who was ever treated for breast cancer had screening CT scans I don't think people who were actually sick and needed them for something critical could get an appointment!

Be glad you are fine, and run, run, run away from the Dr. office.

In the words of the songwriter Steve Goodman, who incidentially died of cancer - don't go looking for trouble, trouble will find you!

mkl48

HI,

I quess the real question is why dx mets earlier does not increase survival. And yes, even a clean scan does not mean there are not cancer cells floating around.I do wonder about the more recent trials of very low dose chemo that goes on for a long time.Would that control those cells? Without symptoms or lab changes,the scans really don't say one is cancer free. The latest ASCO guidelines still do not rec tumor markers, or circulating cell tests for early met detection or even KI67 for prognosis.SOmetimes I wonder what they do know?. A recent study did suggest that KI67 response to chemo was more predictive of outcome than clinical shrinkage during neo-adjunctive chemo. Beth

AnneW

This topic always opens a can of worms. It's like a bucket of ice water thrown in one's face.

There's no early detection for breast cancer mets. When you find it, it's not early. Looking for a distant (not local) recurrence and finding it a little early does not improve overall survival. And looking for it when there is no outward indication that it exists leads to amazing anxiety. And more testing.

Let's say that you have mets. And that you get symptoms one year after they (the mets) develop. You've had a relatively happy year (think quality of life) before treatment starts. You get treatment for three years, and your mets overtakes you (death.)

If you find that met six months before symptoms develop, you start treatment right away, have treatment for three and a half years, and mets overtakes you. You thought you were "catching" it sooner, but the outcome was the same.

This analogy is not meant to cause hopelessness. It's just that worrying about it and finding it sooner just doesn't change the situation.

This is not my own analogy.This is from the book AFTER BREAST CANCER by Musa Mayer, a bc activist and author who was once very active on bclist.org.

Some of Musa's thoughts on this topic include these:

1. "While generally not curable, metastatic breast disease is among the most treatable of advanced cancers. It is rarely an immediate death sentence, as many patients fear."

2."Although not doing follow up tests may mean an initial delay in the detection of a first metastatic recurrence, treatment is still just as effective in controlling the disease, sometimes for many years."

It's really hard to get your arms around the fact that distant mets does not have an early detection like a primary cancer does. Treatment for mets can be decent for control, but not for a cure.

I hope not to incite a flame war about this--it's a touchy subject. But I feel it's important to understand the difference. Until we get some wonderful targeted treatment for mets, early detection through routine scans will only increase anxiety and cost, not overall survival.

Anne

Member_of_the_Club

This one becomes very personal. I don't get the scans and I prefer it that way. tests beget tests so they often lead to false positives that require further testing. Sometimes it is worth that risk. I have had false positives on mammograms and breast MRIs that required follow-up biopsies. I'm not sorry i went through it because the risk is sufficient to warrant the testing, but it was an education for me. My husband had a heart scan that showed a lung nodule that led to a CT scan (and great anxiety) that showed it was b9. A classic situation of tests begetting tests.



Many find the peace of mind that comes with clean scans is worth it. No one can make that decision for you. I find the stress of all the testing to be very difficult, so for me it isn't worth it, unless one of my docs thinks it is.



I do think you should be careful about the radiation and avoid the full body scan.

Kerry1000

Thanks for the responses.  I'm aware of the literature says, but my concern is that the last study on this matter is (I believe) from 1998, which is before a lot of the new drugs came on the market.  I'm not sure if the situation might be different now.  Also, I tend to take conventional medical wisdom with a grain of salt - for example, it was believed for many years that stomach ulcers were caused by spicy foods and stress, when in actuality they're caused by a virus.  It's not that I don't "believe" in conventional medicine, I just need to think things through for myself.  I wouldn't want to be scanned constantly, but I'm still wondering if a bone or other scan every year or so might be worth it.

I'd love to hear any more thoughts.  I'm always impressed by both the emotional support and well-reasoned thinking I find on this board.

Kerry 

NarberthMom

Kerry --



From what I understand, there is a size limit for a tumor to be seen by a scan. And, once it is large enough to be seen by a scan, it is almost large enough to cause symptoms (bone pain, coughing and SOB, liver enzymes out of whack). So, in general, the docs have decided that the cost in anxiety levels and radiation damage are not worth the advantage of finding a tumor a month or two earlier.



That said, I had an interesting conversation with my radiologist this morning as she was doing a biopsy on something identified on a post-chemo MRI. She is very supportive of pre-chemo/surgery staging MRIs and feels that help better stage the cancer and give information for best treatment path. However, she is less supportive of routine MRIs, as she feels that they lead to way too many false positives and unnecessary stress caused by the unnecessary biopsies. However, when she heard my whole history (my outstanding and well-respected breast surgeon couldn't get clean margins because the original tumor was too close to chest wall; tiny focus of LCIS found in my other breast; AND dense breasts), she agreed that alternating MRIs and digital mammos was appropriate for me. Again, because of my close margin, my onc has recommended chest X-rays once a year as well. The bottom line is that the decision has to be made individual by individual, in consultation with our medical team, because every individual has a unique history.



I'm node negative, so I'm OK without having whole body scans, but my onc and I have agreed on the two week rule. So, when I was having undue pain in my right hip, he ordered bone scan and pelvic X-ray, which fortunately just showed that I am aging!



And, my onc does routine blood tests to check for liver function. He also wants me to make sure that my PCP follows-up on my heart health (weight, blood pressure, cholesterol, EKG as necessary). And his NPN wants to make sure that I'm taking appropriate vitamins and calcium.



I have a lot of respect for my onc and I'm very happy with what we've worked out for my personal follow-up treatment plan! I hope that my discussion of this helps others going through their decision making process.



Hugs to all,

Hillary

abbyglp

I am going through all this right now, i had a 3month follow up to post treatment (mast., chemo, taxol, rads, herceptin, arimidex) May will be my 2yr aniversary from dx. So I expected a (your markers are up a little but your fine see you in 6months) OH no, your markers are up a little and we need to do scans, so I thought I would fly through those, like always, but this time I had a clear ct scan but they found two suspicious spots on my spine, so I have to wait until march 12th to find out what they are. I have an MRI. Now all my aches and pains are bigger then they were, because i am convinced that they are going to tell me mets. This is going to be the longest 2 weeks of my life. But I agree yearly scans and ca27-29 should be at least tested every 3 to 6 months. If I have mets on only 2 spots  I think they should be able to control it, rather than finding it 9 months from now and have more spots and progression. The stress is so heavy to be carrying around , I would think they would schedule these things faster if there is a possibility of mets.

abby 

TenderIsOurMight

Dear Abby,



I'm sorry you're going through this. I saw your other post about whether to stop the Arimidex as your oncologist recommended. I know that pill does seem like a security blanket for us, and it can be hard to stop after all these months. But a couple of weeks off seems o.k. like your oncologist recommended. On the hormone thread, we've had lots of ladies who have taken hormonal vacations of a month or two...



Maybe you can call your MRI office and explain to them this is stressing you a lot. Ask to be put on the stand by list. Patients cancel for various reasons, so calling them even in the a.m. several times may re-inforce you're a wanting to get it done type.



I'll keep you close in my thoughs, Abby.

Tender