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Roxanne View Drop Down
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    Posted: Sep 22 2010 at 1:54pm
Tomorrow I will be seeing my oncologist. This will mark one year after treatment for my stage 3B TNBC. I am still having a hard time with this "wait for symptoms to appear" before any testing is done. Should I be asking for any tests to be performed on this visit? My Dr. does not do tumor markers and I have never had a baseline PET Scan, so I wonder if I should just do as I have been on each of my previous visits and just hear him say "See you in 3 months."
   I really hate this wait and see, when I worry that waiting will "bite me" in the end. Any thoughts or ideas for me for my visit tomorrow on what to ask my onc?
DX 1/09 Metast. Adenocarcinoma
Stage IIIb Grade 3 TNBC
BRCA 1/2 Neg.
Lumpectomy & Ax. Node Dissect.
4 Tx A/C finished 5/09
12 Tx Taxol finished 8/09
35 rads finished 9/09
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ponan View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ponan Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2010 at 2:06pm
I just went through the same thing. I ask for the tests, but he says not unless I am symptomatic.  He did do a CAT scan of my pelvis and abdomen to make sure there was nothing abnormal there.  But I "thought" there would be a PET scan, but he says because of expense,,blah, blah... When I went yesterday, I did just write down what I wanted, blood work on Vitamin D, hormonal testing, follow up echocardiogram and my next mammo and they just wrote up the order.  Who knows?  I also got a lot of "your just going to have to live with this".
Diagnosed 7/27/09; Lumpectomy w/Axillary Dissection 8/25/09 Right Breast 1.8cm Grade 3
0/10 nodes positive Triple Negative 4AC 12 Taxotere-34 Radiation Treatments
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2010 at 2:36pm
Roxanne,

You could ask if he'll do a PET scan.  He may disagree, but at least you asked.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2010 at 2:48pm
mine isnt doing PET, but does CT every 6 months, and I am arguing that
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NanMJ Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2010 at 6:31pm
I am a 1 year survivor and mine doesn't do any tests either, just 4 month check ups for 2 years. I found that hard in the beginning because I just wanted to have proof that it was gone. I go to Mayo Clinic in Rochester, MN and see a wonderful oncology NP whom I call "my angel". She has great words of widsom and told me "you have to live your life, we hit your cancer with a baseball bat and have done everything we can. It is now out of our hands." "We could do all the tests, but just because we don't see cancer today doesn't mean it won't be there tomorrow". Also sometimes the tests are inconclusive, expensive and may be incorrect either way which can cause worry and possibly more tests. She said through studies they have proven the survival rates are the same with and without the tests. The best thing is to listen to your body and have an open line with your oncology department. She said if I have symptoms of any kind for 10 to 14 days to call and then they'll do tests as needed.

I hope you find comfort in her words as I do. Take care
Nan
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CTB Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2010 at 7:08pm
Thank you for posting, Nan. I find these words very reassuring. They are basically the same things that my entire team of physicians has told me. It helps to know others have been told the same. Chris
Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tabatha00 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 24 2010 at 10:14am

I'm with Nan.  My oncologist is a highly respected well-versed doctor when it comes to breast cancer.  When I first met with him I asked him about tumor marker tests (my sister had one every 3 months and then every 6 months, etc.) and he doesn't do them because they have a high false positive rate.  He also doesn't do CT scans.   However, when I found out I had breast cancer they also found I had a small tumor in the bottom pole of my kidney and it was cancer but NOT related to breast cancer.  The tumor was Grade 1 (slowest growing kind) and my urologist said the odds of that coming back are slim to none.  He said anything can happen in medicine but it's not likely.  He does, however, have me do a CT scan once a year.  I kinda like the "ignorance is bliss" way of things but I know I shouldn't be like that.  I had my first 6 month check-up with my oncologist in July and everything was fine.  I have my yearly check-up and CT scan with my urologist in March 2011 so no stress there right?  lol

I work with several ladies who have had breast cancer and 2 of them had false positives on a PET scan and one of the ladies with a false positive had a liver biopsy TWICE and it came back benign but lit up during her PET scan. 

Hope that helps a little bit.  It seems a lot of physicians are moving away from tumor markers and scans and tests everytime we don't feel good.

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Sep 24 2010 at 11:46am
Hi,

My oncologist doesn't like scans either. He does full blood work including markers every time I see him but he says he only orders scans when there are symptoms. He doesn't like to expose his patients to the high doses of radiation (specially when they are already prone to cancer ...)so he doesn't do them routinely.

I actually saw him yesterday for follow up and since my 2 year anniversary from surgery is coming up in November he told me he would see me again in 6 months instead of 3-4 (which is what we were doing). I've had some mixed feelings about being "graduated" to this next step... On one hand he made me feel great as he told me my blood work showed that I was doing wonderfully and he loves the fact that I feel fine and actually said it was time for me to live my life and think less about doctors ( yeah right, like if that was so easy to do ...) But in the other hand I feel like when my mom dropped me off at school and I wanted her to stay and hold my hand ...

It kind of makes me nervous not to see him for a while. I did tell him and he told me that a good idea was to stagger my doctor appointments (the surgeon, the ps, the radiation oncologist, the gynecologist oncologist and him - wow! I am building an army... well at least I have enough for a basketball team )so that way I don't have to go long stretches of time without seeing a doctor who may address my concerns. I guess I'll have to start working on some calendar logistics.

Best to all,

Natalia

Edited by nmunoz - Sep 24 2010 at 11:49am
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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M Alison View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote M Alison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 24 2010 at 2:12pm
Nan,
Those were my doc's words too, almost to the letter.  Even if you were to be scanned and are NED today, who knows what next week will bring? 
 
My onc sees me every 3 months to ask about any symptoms, do a general physical check, and feel me all over for lumps.  That's it.  (I also have mammo's and MRI since I have one real breast).  She says the risk of recurrence for tnbc is highest during the 2 years after chemo ends.  So when I get to that timepoint (next March), we will switch to every 6 month visits.  (Unless I have symptoms, of course, then she'd see me right away and would order scans if warranted).
 
Best to all,
Alison
Age 55, Dx 9-08 TNBC, mast 10-08, stage 2, 1/6 nodes, AC + Taxol + Avastin, rad, BRCA1&2 neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2010 at 1:52pm
Ditto here too.  My onc sees me every 3 months, full blood work and markers, and same old, same old - if any symptoms that last two weeks, then it's scan-a-thon time.  While she doesn't feel that the markers are always accurate, she does take them from the very fist visit on and does use them as a barometer - deciding for her if SHE wants a scan.  If they start low, remain low and suddenly shoot up, she knows she has to take a look.  She did, however, before my chemo could begin, insisted on Pet (insurance wouldn't pay for it) so we did neck to knees CT scan, full bone scan, chest xrays - just to make sure nothing was hiding out anywhere.
 
Hope this helps a bit.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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