ASCO recommendations?

Anonymous

ASCO recommendations?

Anonymous

Just read ASCO's "recommendations" - here it is:

Recommendation

ASCO recommends that the following tests and imaging tests are not used to watch for a recurrence when a person has no signs or symptoms that the breast cancer has returned:

• Tumor marker tests for CEA, CA 15-3, and CA 27.29
• CT scan
• PET scan
• Bone scan

Really?  Then if someone has no outward signs or symptoms of cancer, as in many cases (mine included), what do they recommend??  Wait until the recurrence is close to being untreatable or unmanageable? 

And I dunno, but today I'm on a roll about the word "survivor".  ARE you kidding me?  I do NOT feel like I've survived after reading the overall breast cancer rate according to some docs, is epidemic (up 45%), and continues to rise.  That tells me that 1) testing is ineffective and 2) treatments are not working all that well, even though they say they are tailored to each individual. 

Sorry everyone -- I just feel better getting this off my reconstructed chest. 

Shelly

 

 

Holeinone

Shelly, It scares the beejeebees out of me, my MO has told me this 3-4 times. NO testing, take the Arimidex and live life. I know my risk of recurrence is high. Cancer was bursting out of the nodes & all matted together. 

So, I guess acceptance & moving on is our reality. I wish I could live in denial, I might not be so anxious.

peacestrength

Thanks for this Shelly.  

The ASCO recommendations are horrible!  

Anonymous

Holeinone -- I wish I could live in denial also !!  That's like telling us to shut up and go on with life like cancer never happened.  I don't think so   I've had 2 friends with Stage 1 and 2 BC and both have recurrences, and both at about the 5 year mark.  That tells me that is the length of time they feel comfortable in telling us we have the best chance for no recurrence. 

 

Holeinone

my MO actually told me she thought IF my cancer is to come back, she thought it would be around the 2 year mark. I have noticed numerous BCO ladies dx with mets around that time frame. Then you have to wonder if the mets was there from the beginning and did not show up on the 1st scan. 

Because I had so much cancer in the axillary, I did have a Pet Scan, right after my lumpectomy. Mets will not show up on that scan if they are too small. 

My fear, besides the obvious, is with no testing of any kind, it would be easier to slip into a hypochondriac thinking. I am trying very hard to get moving and not think about it. I do not need to tell any of you how hard that is... 

Anonymous

Well said, Holeinone !!  No one will have a real good idea of what we deal with day in day out.  I'm glad your MO said what she did about your risk of recurrence and hope that gives you some peace of mind somewhat.  I'm just sick & tired of hearing conflicting information about this whole cancer biz. 

Hugz to all   --

gillyone

This discussion has gone around and around on BCO many, many times. It seems like those of us with BC and our oncologists fall into one of two camps - to scan or not to scan on a regular basis to "see" if there is anything going on. I will say up front that my onc is in the no scans until symptoms present camp and I am ok with that. When it comes down to it, it doesn't matter if your recurrence is found in, say, January through a scan or, say, May when your body is exhibiting some symptom. It does not change the eventual outcome - ie whether you survive or not. Generally, it is not a case of a recurrence not being found until it's too late for treatment, because your body tells you something is wrong, check it out. Many follow the 2 week rule - if you have an ache, pain, or dizzy spells or whatever, for two weeks then see you oncologist.

That being said, some people are not happy unless they get regular scans. But I feel they are living with a false sense of security. A "clean" scan just means nothing was found, not that nothing was there, and only on that day was nothing found. It tells you nothing about the next day, or the next, or all the rest until your next scan.

Peace - you can push till you "get what you need" get all the scans your oncologist allows, if you feel that gives you peace of mind. But it is not standard care and not something we should be telling everyone to do.

peacestrength

Gillyone - true, I was thinking from my own peace of mind regarding the standards - so, I deleted my comment about pushing.

I still believe the "standard of care" should be flexible to those who want to be monitored closely.

Anonymous

Gilly:  I think I should explain what point I was making.  As for me, nothing told me anything was "wrong" in my body.  I felt the best, ate healthy, kept an average weight for my BMI reading, etc.  This is also what's scary to me -- the fact that prior to mast surgery, the breast MRI showed no "activity" and two suspicious areas, one measuring under 1.5 cm and the other 2.0 cm.  I came out of surgery with 4 pos nodes and a 6 cm tumor, grades 1-3. I know now we need ALL the tools we can to accurately assess each diagnosis, from the beginning.  If really think if my friends that recurred would have pushed for at least once every 6 month scans & some oncs do back up that protocol, I believe they would have been put into treatments much sooner, and not later, when the benefit was not that "beneficial". 

I would rather get regular scans, say once per year, because as you said, perhaps one day nothing suspicious shows, but who knows about the next?  If we could deny the alarming rate that BC is happening, I wouldn't feel so strongly about better testing.  I'm not telling everyone to get all kinds of scans themselves, but if they help to pick up a recurrence and/or squash some fears in the road ahead, I think it's well worth it. 
Shelly

mary625

I wrote a letter to ASCO about this a couple of months ago.  I think we should have the right to request reasonable scanning if we want it.  Just my two cents.  Doubt that my letter did any good.  

TectonicShift

.

Anonymous

My onc does scans if I am concerned about a pain or an issue that came up on the last scan.  He's pretty flexible about appeasing me because he knows I worry about recurrance.

Oceana

Anonymous

Mary, Tectonic, Oceana - you all hit the nail on the head !  I couldn't have said it any better about the stress reducer of regular scans -- thank you !  Find that onc that will support you.   Peace - Shelly

peacestrength

I 2nd that, Shelly!  

Holeinone

Shelly, thanks for starting this thread, it really helps to talk about it and bounce off our fears. My MO is straight by the book, and the hospital also prints out those guidelines for all cancer patients. 

I am pushing for the Zometa in May. I will change MO at that point if I do not get it. Changing Drs. Is not a easy thing. I live in a rural area, big city 2 hours away and it's the same corporation. So, I am trying hard to eat right, and move....

Anonymous

Holeinone:  It's great to hear our sisters here fight for the best care in this long journey!  If I could change the "guidelines" with a wave of a magic wand to be more preventative and not "reactive" to what should recur for us, I would do that in a NY minute!  I hope you get the Zometa; did your onc choose a different hormonal therapy that you were not ok with?  I'm on tamoxifen, and thankfully, I can tolerate it pretty well (most days). 

Peacestrength:  thks for the support --

Holeinone

Shelly, 

I am taking Arimidex, been on it 5 weeks. Some SE, but I can handle it. Zometa is a Biophosphonate, that they give women that become osteopenia from AI. I want to get that 2 times a year as a preventative. MO said NO originally, but I told her about the new studies, and if nesscessary, I would pay for it, out of pocket. 

LindaLou53

I have had annual CT scans for the last 8+ years following my Stage 3C dx with 23/23 positive nodes.  I DO believe it makes a difference when you detect problems earlier than later.  The issue of life expectancy and quality of life is certainly open to debate when it comes to early detection.  I am currently dealing with abnormal findings on a recent CT scan which has the markings of a BC recurrence with distant mets.  I have had absolutely NO symptoms!  I feel great and life has been full and active these last 8 years, but without this recent scan how long would it be before I knew there was a problem?  

My scan shows widespread lymphadenopathy with a couple of suspicious small bone lesions, but no organ involvement.  I am having a biopsy tomorrow of a neck node and we will wait for pathology to start any new treatments.  Where would I be a year from now, two years from now if I was not being monitored by scans on a regular basis?  How much more involvement or progression must occur before we have physical symptoms? Is it easier to treat a small lesion versus widespread involvement?   

Since none of us can take two paths at the same time to determine which one will give us the longest survival and quality of life, I choose what makes logical sense to me.  If I am extremely fortunate and this new finding is not a cancer recurrence but something else, I believe I am still better off finding it now and getting treatment for an apparent medical problem.  I understand not everyone will agree with my stance on this.  We are all individuals both in our disease process and in our approaches in dealing with disease.  There is no cookie cutter answer that fits all.

P.S.   I also keep in mind that many of the new "recommendations" coming to us from various medical organizations are unfortunately, impacted by the current economic and legislative changes in healthcare.  Surprising how many labs, scans and routine exams are now considered "unnecessary".  There is no question that US healthcare needs an overhaul to keep it running efficiently and as cost effective as possible.....but let's not throw out QUALITY healthcare and the welfare of the patient in the process.

Anonymous

LindaLou  --AMEN to all you've said!!  I agree 100%.   I think your onc is wise to keep you under surveillance because you and I had no "symptoms" to tell us anything is suspect and needed further testing.  I have never for one minute thought that scans are a waste of time, even if there's a small amount of harm from the contrast used in testing.  Keep us posted on your neck node results -- I am sending the very best thoughts for you. 

Shelly

Momine

Linda, I tend towards your viewpoint as well. The thing that boggles my mind with the ASCO recommendations is that they throw all "early stage" cancers together. One and the same recommendation for  everyone from stage 0 to stage 3. That part makes absolutely no sense to me. 

Of course it would be crazy to put a woman, who had been successfully treated for DCIS, in a CT-scanner every year. At the same time, it seems equally crazy to confine the follow-up on a stage 3 patient to a perfunctory pat-down. There are valid concerns about using too many scans, and I, personally, hate the things with a vengeance. But there are other tools: TMs, full blood panels, U/S, chest X-ray etc.

encyclias

What I have found interesting is that in many studies for "early stage" cancer, the narrative inevitably somewhere says Stage I and II with no mention of Stage III at all.  While technically Stage III is considered "early," in the minds of many doctors and researchers we are somewhere in limbo between early and late stages.  So with that in mind, I don't believe Stage III  is  really being covered many times by these studies and recommendations even if Stage III is said to be included in the term "early stage."  I just get the feeling that they are focusing on Stages I and II for recommendations, but tossing Stage III into the mix by default.  What applies to Stage I surely doesn't apply to Stage III all the time.

(I've only had one cup of coffee so far, am I making sense?).

Carol

Anonymous

Linda & Carol:  I agree, in fact one cancer website even defines stages 1-3 as "early" BC. 

Momine:  I agree, a light "pat down" for stage 3's is not very helpful sometimes. 

Holeinone

bump