Were your mets found through scans/bloodwork?

[Rozebud]

Let's try the polling function.

I'm debating with my oncologist on the value of these tests. Since I have such a high recurrance rate risk, I feel they are necessary. She says they are not recommended by the assoc. of clinical oncologists (at stage I-III), that it doesn't improve overall prognosis if you catch it early (that makes NO sense), and that symptoms will help you find it quickly enough.

I'm struggling to believe all of this, and wondering how hard I should push for the tests. Can you please share your experiences with me? Thank you.



<span style='font-size:14pt;line-height:100%'><span style='color:red'>Rose</span></span>

Dx'd 1/04 at 33, while 33 weeks pregnant (baby devliered at 35 weeks and is now >100% in weight %)!

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7, 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin, mastectomy, rads (7 weeks), tamoxifen and zoladex (5 years)

~*~VISIT OUR FAMILY!~*~ ('http://www.edrie.com/kopecky')

[*_Christine_*]

I love your family pic. with your 2 cute little rosebuds.
I did self breast exams every month at age 37 and found my primary BC at age 391/2. I had a lumpectomy and had the biopsy of 10 nodes indicating no + nodes. My tests were always normal. After radiation and healing, I Icontinued to check my breast and armpit and also under the collarbone where alot of womwn have found their relapse. It took 9 years to show up by self exam alone. I knew the lums I was feeling were Cancer mets. So before biopsy, the surgeon tested my blood. All seemed normal, the CER was indicating a slight increase over the normal range. She wanted to biopsy these nodes and agreed that it was a relapse after 9 yeasrs free. The other tumor markers were all normal , and never indicated metastases. Tumor markers are not enough to go on, but in conjunction with other screening methods it can be helpful.
Blood testing chemistries can help to follow your general health, liver, kidneys, red and white cells indicators the Onc uses to maintain and check on side effects of chemo.
Hope I helped your poll. I'm not sure , but good information can be better than a poll. Keep asking questions.
Well wishes , hugs Christine

[StephN]

Hi Rozebud -
This is a very important question and one that deserves debate in most cases. However, the way things have been going for us Her2+++ patients, there is no such thing as too much monitoring from my experience.
My first liver mets showed up by CA27-29 breast cancer marker at the same time I started having some symptoms such as a pain in my right side.
I was on an every 3-month followup schedule at that time (only 6 months after getting off first round chemos). Tumor marker went from 19 in Oct to 70 by first week of Jan. At that time about 55-60% of my liver was tumor ridden. CEA was not up appreciably was the soft tissue tumor was not making this protein.
Once this was all cleaned up and I was off the trial drugs, we went with 3-week Herceptin/Zometa + markers. The CEA was added as a regular screen after first year NED.
Now with this brain tumor, it is apparent that it makes the CEA protein which is circulated out of my brain through the blood where the marker picks it up.
You, I believe have had Herceptin. I did not until stage IV. This may have made a difference in my case, but the way the liver mets came so fast and furious with high grade tumor, maybe not.
I would at least get the 3-month bloodwork including marker and see your med onc that often for the first 2 years. This is not an unreasonable request.

[jessica]

Hi~
PLEASE INSIST ON SCANS AS PART OF YOUR FOLLOW UP!
I was dx'd at 33 also...however I was Stage IV @ primary dx-w/liver mets.I did 49 wks of chemo (3 diff combos) intil NED in 9/03.I've been on maintenance Herceptin since then.
I'm currently wrestling w/a single recurrent met to the liver.Initially we addressed it w/4 weeks of Taxol/Herceptin.The first follow up CT/PET showed that the single spot had resolved, so we d/c'd the Taxol & stayed on Herceptin. After 8 weeks off chemo & another follow up CT/PET,it appears the spot is starting to come back. The plan now is to RFA the spot since no other disease is detectable anywhere else in the liver or the rest of me (Thank God!)
In my case, my 27.29 is not an accurate barometer of my disease load. When the tumor load in my liver was at its highest, once described as "innumberable, immeasureable", my TM was on 68-my onc says she would have suspected that it would have been in the hundreds. Additionally, my liver function has always been normal-another great blessing. In my opinion, if you wait until your labs are abnormal, then that suggest that your body is already compromised & damaged by the disease.
Why wait until the damage is done? Especially when the information a scan can provide gives you visual and tangible confirmation of what's going on.I know it's different w/early stage dx, but isn't the point to make sure your NEVER see Stage IV?
My onc supports repeating CT/PET scans every 12 weeks, even during the year that I was NED.It's kind of tough dealing with the "scan time roller coaster" every 3 months, but I believe that vigilance is the very reason I've continued to do so well & has allowed us to catch & address this recurrence so quickly.
Hope my input is helpful. Please feel free to contact me @jmalucas4@aol.com if I can offer you anything else.
Keep the faith & Take good care!
Jessica
ps-you've got to do what will make you the most comfortable NOT whatever will please your doc (i suspect if your doc were in your shoes s/he would want to to have scans to make sure all was well & stayed that way!

[Guest]

Hi, My name is Margaret and I was also stageIIIb in Nov.2001 at age 38. I also was told the same thing by my onc when I was done with my treatment. It made me very nervous. I am NED now and I just recently started to understand the benefits of not having regular scans as part of my follow up. I do get full blood work done every six months but that is all. I think some of the benefits of not doing the scan work are distancing myself from being defined by my 'disease'. At first I was extremely anxious and perhaps just waiting for the next 'bad news' to come. Without having to deal with the anxiety that I would feel around every scan has been a real blessing. I think it's been helpful to really put my mind on a healthy, disease-free course. In other words, I feel cured and I live my life every day as if I am cured. I stay focused on filling my life up with positive aspects and try very hard to stay out of fear and the 'what if's'. I'm actually now glad that my onc didn't have me do regular scans. It keeps me moving forward in life and not look back. I do have faith that if something does happen in my body, I'll know when I need to know and then I'll go back into attack mode and treat it with everything available. Right now I'm grateful that I'm alive today and living life to the fullest.

[Celina]

Hi Margaret,
It was interesting to read your perspective on follow-up scans. My sister has met. breast cancer, and I agree with you that if you are disease-fee then you need to live accordingly. You really do need to fill your life up with positives... You need to live your life like you are disease-free, but to stay that way I believe that you need to be proactive and not reactive. I'm not sure how much you've read on this board, but I also think it's worth mentiong that MANY women have not had symtpoms and have discovered mets, particularly on the brain. There is alot to be said about the commomly used phrased, "early detection is the key". My sister waited for symptoms before discovering that 85% of her liver was coverd with tumors. It is much harder to get to NED when your liver is in such a state. She waited for symptoms to discover that she had "clusters" of tumors on her brain. As a result, Gammaknife or any other stereotactic procedures were not options. I don't have cancer, but my sister who does believes in follow-up scans and so do I. Wishing you continued good health.

[*_Annemarie_*]

I was diagnosed with StageIIIb in May 2000. I was 31 turning 32. Not the surprise I was expecting. I was on AC for 4 weeks and Taxol for four weeks. I was NED for a year and then began getting bad headaches and throwing up. This was my first brain met. By the way my CEA levels were always within normal range. I now get brain MRI's every three months and I have had two reoccurances but they were single lesions and both so tiny (5mm and 7mm). I hade stereotactice surgery and I have been able to manage the disease. My Drs. have told me that I am their only pt. with bc and brain mets only. Typically they see mets else where when it has gone to the brain. My doctors have said that typically pts. who get brain mets from other cancers do well. (He cannot say about bc since I am his only pt.). So with brain mets monitoring really is the key and my tiny mets typically you would have no symptoms.

[Janet M]

My oncologist is also of the school that believes scans should only be done if there are symptoms. At times i find this hard to understand as it would seem that early detection improves our treatment options and survival. I now have a nagging pain in my pelvis down into my leg (feels a bit like a nerve pain) but i don't know at what point i go running to the doctor. I had a bone scan for a slight pain in the leg six months ago (no where near the pain i have now) and it was clear. I suppose i have no clear idea of when i should go to the Doctor. I find going to Dr's appoinment a real hassle and prevents me from feeling 'normal'. Janet M

[Audrey]

Hi everyone, I've been reading your posts and appreciate your advice & suggestions to be pro-active and get scans during regular follow-ups. While this approach makes sense to me, I still tend to think like Marilyn and am glad that my onc. doesn't recommend regular scans w/out symptoms...I was diagnosed in July 2001 at 36 with Stage III BC, 11/24+ nodes and lived in constant fear of recurrence. My anxiety level while waiting for exam results was terrible, plus I was allergic to the iodine in the CAT scan dye, so I am happy to avoid them and the whole dreaded experience until I do have symptoms or unusual bloodwork... If getting a diagnosis of mets prior to symptoms does not prolong overall survival, then I can't see putting myself through the ordeal of having scans and getting myself (and family) all worked up waiting for the results. Maybe I am just rationalizing my fear, but this what works for me so far... Audrey

[Lolly]

I was on 6 month follow-ups after tx for primary; followups included blood labs/tumor marker, scans annually but if symptoms showed then appropriate scans would be done. I started having symptoms shortly before my second 6 month followup; enlarged lymph nodes in neck, collarbone and axilla, and a rash over my collarbone which biopsy showed to be recurrence. Also a biopsy of one of the neck nodes was positive.
In my case I've always been symptomatic before scans or bloodwork reflects any change, but I have what my doctors have termed "reactive nodes", so I think I'm lucky that way.

[jojo]

Lolly, what is a "reactive node"? Is it an enlarged node where doctors could measure its size by hand feeling throughout treatment?

[jojo]

I actually have mixed feelings about this....

I think routine head MRI's would be a helpful tool, only because gamma knife could be repeated as many times as long as brain tumors were discovered under 5cm. I believe that there are documents indicating about the brain blood barrier and its relationship to Herceptin?...

Once I had a positive head MRI, my onc has been following its radiology's recommendation: to have a MRI follow-up every 3 months. In the beginning, my onc did not really agree with the recommendation, but because they happen to work for the same clinic, she did not object and had no choice, but follow them.

As for other scan tests, I do not think I am having them routinely. My onc arbitrually ordered only at the end of chemo/surgery (Nov '03), again at recurrence (July '04), and finally at recurrence progression in Dec '04 (stepping out of stable disease).

We all know that there is rather a limited number of chemo drugs out there (for the time being); I only wish that they could be re-used over time, just like gamma knife. The idea of prolonging the good quailty of life and saving chemos for really necessary times does make sense to me (somewhat, actually), but what I am really confused is about secondary rounds of chemo putting into remission. How could we know if the next new chemo could put us into remission? If we had relatively slight disease progression, and the chemo did not work, we then would lose our "turn" being on this specific chemo in the long run. This is my current question this month for getting "casual" 2nd opinions (thanks to my relatives; they have network contacts at Harvard & Sloan Kettering).

It is just too bad that our body would know how to alter and become immune to such drugs...

I understand what Maureen & Audrey are saying. I think that there are 2 different types of personality out there: one is to avoid possible upsetting scenarios until they actually occur, another is to face an obstacle upfront in full steam. The 1st type just find it easier to deal with their disease at maintaning a good quality of life. The 2nd type is just very strong to approach the possible worst as well as control their quality of life simultaneously. Because we each deal with our disease very differently and individually, I think that having routine scans is going to be a controversy for a long while.

When I finally make a definite opinion about having routine body scans, I will let you know!

[jojo]

Ooops, typo! I meant to say: "The 1st type just find it easier to deal with their disease at maintaining a good quality of life by 'ignoring' the possible worst, until the next obstacle comes & it is then necessary for them to take on this right in front of their face."

[Penny]

Mom was diagnosed in 1981 with bc in right breast. Found cluster of bb's during a self exam. She was 40 and Dr. said she didn't fit the profile. So much for profiles, she had a biopsy, it was malignant and then had mastectomy and chemo. Continued routine bonescans and bloodwork, then in 1986 had reoccurance. Found lump in armpit. Removed it and she had radiation. Continued to see oncologist over the years with bloodwork and scans. Did great! Fourteen years later she was released from his care and told Dr. was sure this wasn't coming back. She started seeing an allergist for her allergies and discovered she had asthma. Then she lost her voice. The allergist looked at her records and realized she hadn't had a chest x-ray in 5 years! Chest x-ray showed nodules which after further testing turned out to be lung mets. Scan of liver also showed liver mets. Total devastation to our family. Dr. said hers is a slow growing cancer so we felt it was probably there for a while before the symptoms started. Another oncologist couldn't figure out why she wasn't having chest x-rays at least once a year. I don't know if she'd be in better condition now if we found out sooner or not. I feel scans are important. I think you're right--you can't be too careful with this disease. I sneaks right up on you.

Good luck to you. Your girls are beautiful. I have two little girls myself.
Take care of yourself, Penny