Finding recurrance early does not help?

[Kimberly Lewis]

saw this in Dr. Susan loves site:

{There isn’t a lot we can do to detect recurrent cancer, aside from regular checkups and mammograms. Unlike primary cancers, recurrent cancers do not have a better prognosis when they are detected early. Many doctors still do blood tests every three to six months. This may include a blood count (CBC) as well as CEA, CA 15-3, CA 27.29, and liver blood tests. Many patients and physicians assume that using these tests to find metastases early improves outcomes. Unfortunately, we have lots of data that this is not true. This also holds true for the routine use of bone scans, chest X-rays, and CAT scans. Surveillance guidelines (http://www3.mdanderson.org/centers/pathway/lacc/guidelines/nccn990507.html) issued by the American Society of Clinical Oncology and the National Comprehensive Cancer Network advise a physical exam every six months and a mammogram every six months for a year or two and then once a year. If you are taking tamoxifen, you should also have a yearly pelvic exam.}

This shocked me after all our conversations here about getting scans etc... what is the deal? Is this true? Anyone here have any opinion on this?

[tricia keegan]

Kimberly I have Dr Susan Love's book and read this when first dx,I questioned my onc about it and he agrees with this 100%.

I don't get any routine scans or blood tests on cancer markers etc as she just does'nt believe in it and says it cause's more stress.
If I have any pain or symptoms for longer than two weeks she will investigate it fully then but after chemo/surgery/rads/herceptin I have so many aches and pains I 'm really not sure I would recognize this from a recurrance.
It does worry me and tends to make it difficult just getting on with life after bc but I feel if only to put my mind at ease I'd prefer to have scans every few months as at least then I could relax for a while and stop focusing on every little ache!
Good luck!

[RobinP]

Hi Kim,

Immediately after I was diagnosed with bc,my onocologist thought that no regular scans or blood tests should be done for early stage bc. My MD from Dana Farber Cancer Center told me that by the time a blood test or scan would pick something up it would be about the same time that I would have physicial symptoms of a relapse. Also, he felt that such scans would increase my anxiety and decrease my quality of life unnecessarily. I didn't exactly follow his recommendations. I used to do yearly CEA tests, MRIs to the head, and liver enzyme tests. However, now that I am almost five years out, the only tests that I do regularly are the liver enymes. I think I feel alot more cancer free with less stress since I have reduced the witch hunt and vigilence.

PS. Let me just say if I weren't early stage, my approach would be different. I think if I were later stage, like III, I would be more vigilent with blood tests and the works.

[MGordon]

I cannot exactly speak for Lisa, but I can try to relay her opinnions as I knew them...

Lisa felt that after a dx of recurrance it was important to have scans more regularly because since the cancer had already metastatized and treatment for this had started, it was important to see if it was moving to other areas, to ensure proper treatment.

Her favorite example was brain mets. Once recurreance has happened to say the liver or bones, and the onc has started treating that form of recurrance, it was important to have Brain MRIs (and other scans) to keep tabs on the progression. If she had not been so diligent, we would have not found her brain mets and treatment (WBR) would have been delayed.

The idea being that treatment for one type of recurrance may not be the right treatment of recurrance elsewhere and simply using blood markers (i.e. CA29-27) would not indicate "migration" of mets.

[Lolly]

I agree with Mel's interpretation of Lisa's thoughts on detection of recurrence. And speaking for myself, earlier detection of recurrence for me has meant better quality of life, as the mets have been discovered while still small and been "arrested" before experiencing significant physical limitations. I don't know if early detection will translate into longer survival for me, the jury's still out.

<3 Lolly

[Kimberly Lewis]

I really appreciate your input. I know I am very concerned about follow up treatment right now as a reaction to being finished w/ Herceptin. Feels like the strings to my parachute got cut! I hope I am not being insensitive to you who have walked this experience out. It is invaluable to me to hear the details of this journey explained by those who have gone the next step. It isn't comforting to hear that "you have done all you can" or -lets just wait for things to get worse. I am sorry... I wish I could be less emotional and more rational. I guess that is why I ask so many questions and rely so heavily on this site and the wonderful people who post here for comfort and strength. Thank you so much!

[IRENE FROM TAMPA]

Hi Kimberly -

I am just celebrating my "11th" year since my diagnosis in January of 1996.

The doctors may be correct in what they say about prolonging survivorship but in my opinion they do not really know..... statistics do not apply to everyone.

I truly believe that trying to stay on top and being vigilant of your own health is very important. We know our bodies the best. Tumor markers seem to work for me so I insist that they be drawn on a regular basis. By doing this, we have been able to detect earlier growth and start treatment before everything went out of control. Everyone needs to find what works for them.

I know there are no guarantees that this will always work but my 11 years of survivorship has to mean something . I have been actually LIVING WITH ACTIVE CANCER for almost the entire 11 years.

Like Mel and Lolly stated, keeping ahead of this I believe might give us more time if caught earlier on and a better quality of life

I don't know how long I will continue to survive this horrible disease, but like our sister Lisa, I will continue to fight this with all of my might and hopefully as courageously as she did.

Take care.....

[MCS]

after my last herceptin, I sat with the doc for post vigilance. And I was surprised to hear that he did not recommend regular scanning either. well i said no to this! I flet like why isn't there more to catch early, I think it does make a difference in treatment availability

I let him know that as long as insurance covered it I would like to a minimum of one scan once a year. i'm scheduled for mri once a year for the breast also as well as watching a lesion in my sternum. every three months i get a blood panel, he felt that this would indicate breast cancer recurrence. this, i'm going to review now becasue with both breasts gone after the proph mast, the issue now becomes new primaries, not just on the breast wall remaining.

I'll post here when I go see him in March on this

maria

[MGordon]

I know how scary this is but remember this...

If your parachute strings are cut, there all angels all around to guide you safely to the ground.

[KellyA]

My onc. says the same thing about scanning not prolonging survival. I don't mean to sound like I know more, but I will say this- I worked as an assistant to a neurologist for several years and we saw many different types of cancer "show up" in many patients, breast cancer included. For the most part (there were always exceptions), by the time the patient was symptomatic, they were full of it and there were some situations where there were not alot of options. This, I must say was 11 years ago, so alot has changed, I'm sure. It is for this reason that I am so PARANOID about not checking regularly. With much pressing, my oncologist is going to do markers, and had said he would consider doing chest/abdominal CTs occasionally. Of course, I just proved his point with my recent "scare" on my bone scan, and do have to admit that I was totally tramatized by the time it was all over. Such complicated, difficult decisions now. Looking back on it now, wasn't life so easy before cancer?

Love, Kelly

[AlaskaAngel]

It is more spendy and probably is more stressful to monitor more closely, but once again -- what might be true in terms of monitoring for "average" bc is less likely to be true for HER2. There probably IS a risk benefit ratio for us for monitoring frequency as well, and it may even vary somewhat depending on stage, but it should be more frequent than the guidelines for general bc because HER2 grows faster.

And even if actual outcome in some cases might not end up being any different, why would we want to be left to unknowingly continue on difficult treatments if we are kept in the dark longer about progression? In addition, people with limited resources may choose to allocate them very differently if they know they have progression sooner.

I'm not an oncologist, but even I have that much common sense.

AlaskaAngel

[MGordon]

There is a difference between "living in fear" and "being informed". Do not let your medical professionals talk to you about living in fear now - which is what I hear as a "typical" reason to NOT test/scan! We are talking about staying informed to ensure we can make the best possible choices for our lives and our families.

[StephN]

Good topic, Kimberly -
We have visited it before, but there is always a "new crop" of survivors in the same boat - feeling adrift with no active treatment.

I will get to my own experience farther down if you care to keep reading.

When a patient has an agressive form of cancer, the doctor should feel DUTY BOUND to followup with this patient - not just consign them to the "wellness clinic" with annual checks or less.

I have read Dr. Love's book and heard her speak in person on more than one occasion. To me the point she is making is NOT whether to followup, but that most of the time it does not matter when the disease progression is caught vis a vis overall survival. Again this is a "lump sum" type of cancer she is talking about, and does not distinguish for our kind. Did you follow the link to the Surveillance Guidelines? Often these are not specific to our brand of breast cancer either.

I did not have adjuvent Herceptin - those trials were in early days in 2000. For my type of cancer (after intial treatment) my onc put me on blood draws every three months for CBC, liver panel and markers. I was scheduled for a chest x-ray at six months. He was well aware the HER2 positive cancer can come raging back - and in my case IT DID. So quickly that even my treatment team was taken by surprise. I was beginning to have pain in my side (from the extensive liver mets) at the second 3 month blood work time - so it all happened at my scheduled followup. I was on a new treatment the NEXT DAY. It was a very scary time - I hardly knew what hit me.

The point here is that even if you have frequent checks, the disease can rear its ugly head so quickly, that in my case only MONTHLY markers would have been earlier tipoff. We had not even gotten to the point of any followup scans other than the chest x-ray, which was clear.

We had established during my initial rounds of treatment that the CA27-29 marker seemed to work for me, so were going with that. This is not the case with everyone. And don't forget the HER2 serum test, which your doc may like better than the older markers.

Now there are newer sophisticated scans such as the PET/CT, which should be more accurate and cause fewer false positives. I will be having such a scan in a few weeks as they have remodeled the radiology dept at my cancer center.

Even though many of the ladies here had adjuvent Herceptin, we KNOW that it does not work for everyone - though it is nice to be positive about your chances. Until there is a drug that will show 100 percent survival, there is no way we can be complacent about our situation with this disease.

If you feel that your disease is untrustworthy, I encourage you find an onc that will order the followup screening tests.

[rinaina]

I just want to say thanks for starting this thread Kimberly. I keep learning from others here which helps me be better equipped at my onc visits. Once again, thank G-d for this forum. I am still on Herceptin but already think about the what if's once I complete my year on it. I have gained a lot of confidence from all of you in handling my treatment and care and would never hesititate to ask for something from my doctors if I felt I needed it. I am however, still on the fence about routine scans and certain tests being an early stager. I am a bit apprehensive about the effects of routine scanning. Many friends and family members ask me how or when will I know that I am cancer free and I myself am not sure of the answer. Care to shed any light on the answer to this question?

[Linda]

I am also really interested in this thread -- thanks for starting it. I'm stage 3a, about 19 months from dx. I've had 2 routine scans, and both times had false positives -- the last time I was told that I probably had metastatic lung disease.
After more radiologists' input and then a full CT/PET, they realized that I have radiation scarring on my lung. The experiences were awful and both times lung biopsies were being discussed.
Anyway...next week I have my next check up and will discuss future scanning with my onc. My questions will be just what were talking about here: What's the REAL benefit (if I get mets, will my quality of life be better, will I live longer because of earlier detection and treatment?) of scans. I'll post what she tells me. But I wonder if they don't really know -- for some of us, it might make a big difference, for others it might just interfere with our quality of life now. It might depend on where the mets come, how fast they grow, how we respond to treatment. And no one can predict that.
I'd love to hear anyone else's thoughts and info.
Love
Linda

[Chelee]

This is a topic I have had a difficult time with myself. Makes no sense to me to WAIT and NOT scan. I even had this discussion with my Rad onc because he didn't believe in scanning/testing...he said it doesn't change over-all survial. My argument for him was that if I run into my house and see a stove fire...what happens if I say, "Gee, thats rather small right now...I think I will go watch some TV for a while and have a bite to eat. Then come back and put it out". I said, "By the time I come back to it...my entire kitchen and house will have burned down. So it WOULD pay me to put OUT that fire the *minute* I saw it. To me it seems common sense that the sooner you find something and deal with it the better the out come.

I CAN'T help but wonder how much of this is not *financially* driven by the HMO's/insurance companies putting pressure on the doctors NOT to order scans unless they have too? If your a stage III'er like I am...I can become what THEY (HMO) calls a financial burden on the system. They could take care of 30 to 50 people for what it cost them to take care of me if they do all necessary care I require. (I'm a big drain on them.)

I've read so much on this topic LONG BEFORE bc. Its sad...but much of its true. Our health care system needs a complete over haul. In fact...I will attach one webpage I was looking at the other day...it will give you an idea of things the doctors don't want you to know. (Its a SHAME they put our doctors in a position like this.) They NEED to let our doctors do what they went to school for and leave them alone! (If you want, you can jump down past the first part to where it starts with the "10 things your doctor doesn't want you do know".) Myself, I BELIEVE in scanning...and I push to get all mine. It is nerve racking, but I feel better after being checked.

http://www.newsnet5.com/personalfinance/8037525/detail.html


Chelee

[HavahJ]

Finding a skull metastasis early saved my life. HavahJ

[Kim in CA]

After having two recurrences, I feel it is best to strike while the mets are small.

When I had my first recurrence to my liver a little over 4 yrs after very agressive treatment for my innitial breast cancer, I know for a fact we let things get too out of control. This whole topic gets me a little fired up, cause I think that my outcome may have been different if we had started treatment earlier.

To make a very long story short, it took over 3 months from the first indication that I had recurrence (elevated CA15-3 @44, and a suspicious walnut size spot on my liver) to actually beginning my treatment of Taxotere and Herceptin (when my markers were over 1000 and PET scan revealed mets throughout liver). If I had started my chemo and Herceptin when my tumor burden was small, I don't think I would have had to stay on the Taxotere for so long and then end up having a liver resection to address the area that would not clear up( that turned out to be necrotic tissue anyway). Who knows, if I hadn't had all those cancer cells circulating unchecked for so long, it might not have gotten into my brain. I know I'm just speculating, but it still gets me upset at times.

The point is, doctors don't know how any of us will respond to a given treatment. If mine had known how well I would respond to the Taxotere and Herceptin he probably would have been quicker about getting things going, but I really think he thought I was a doomed anyway. Because I was on chemo for so long, and also had high dose chemo in 1997, my bone marrow has been permanently affected and I still struggle with my blood counts. Let's face it, all that cumulative chemo does take it's toll, kind of like skin damage from the sun (as in "where did all these wrinkles come from!").

I am a totally proactive patient now, and I do believe it has helped my survival. The brain scan I requested caught my tumor while it was still small enough to be treated with Gamma Knife and thus far have not had further recurrence to that area.

We Her2 patients just don't fit the old way of thinking IMHO!

Kim in CA

P.S. coming up on ten years next month!

[Carolyns]

I am with Kim. I have been fighting for 18 years and I am only 50. How do they know how we will or won't respond? Early stage or stage 4...they don't. It is important to know this belief as you push for follow-up. It changes everything.

Perhaps hormonals and Herceptin are changing history. Just keep with a doctor who provides hope and beleives that you can beat the odds even if (god forbid) it comes back.

Carolyns

[heblaj01]

I think PET/CT scans & serum HER2/neu tests should be made at regular intervals even soon after the early breast cancer has been successfully treated.
I agree in part with the oncs objection that there may be no benefits in overall survival in making early diagnostic of reccurence or progression to mets.
However discovering with a PET/CT scan new mets at an early stage & confirming with the serum test (or biopsy if feasible) that they are for instance HER2 mets may provide an advantage in combating an agressive form of the disease which may follow a relatively slow growing ER+ case.
An other point is that nearly all new drugs are initially clinically tried on advanced cases of the disease when they face the hardest conditions.
After they are approved, further trials are started to get approval for less advanced cases. As science progresses these new drugs tend to be more effective in both advanced & early cancer as shown,for instance, by Herceptin & Tykerb.
The case could be made for early treatment with Tykerb, if confirmed by current trials, to save some patients from having to deal with brain mets.

[Shell]

I felt the reoccurrence both times before any testing picked it up, but I was staged at IIIC and thus wasn't totally shocked. For lung or liver, it just seems that if the chemo will work, it will work on 50 nodules as well as 10 nodules. But I'm completely non-medical, and thinking in that manner makes me feel better...

I think that for brain mets, it certainly appears to seem that regular scans will help instead of waiting for symptoms. I get an MRI every 6 months, and my onc allows this...

regards,

[Jean]

Kim, Irene, Tricia, and Carolyns,

Your stories are so wonderful to read that your reaching ten years,
11 years, 18 years, and 20 years plus....

These stories are lessons to be learned...

Thank You Ladies!

God Bless and I wish continued success.

Warmly,
Jean