No more blood tests - I'm concerned |
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PHCA 
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Joined: Aug 29 2012 Location: Lake Forest, CA Status: Offline Points: 8 |
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 Topic: No more blood tests - I'm concernedPosted: Nov 05 2013 at 5:08pm |
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I have finished all of my chemo, lumpectomy, rads, and am on a 3 month follow up with my doctor who is considered one of the best in Orange County, CA. I have great faith in him.
This is my third 3 month follow up, and at the previous visits, I was always given a blood test, and told "if you don't hear from us, everything's good". This visit I was told that they were no longer doing the blood tests. Something about the results were not always accurate and felt there were more reliable ways to keep on top of anything that might cause concerns.
Has anyone heard of this new process?
I'm wondering if it's more of this healthcare invasion that they know better than we do or our doctor.
I did tell the doctor I wasn't at all pleased and he said they would do the test this time, but on the next visit it would be necessary.
I sure would appreciate any thoughts from anyone out there to put me at a more comfortable level.
thanks to all of you and your concern and input. It really helps us out here to cope. PH
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Nov 05 2013 at 9:12pm |
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Dear PH,
It sounds as though you are 9 months beyond end of treatment? Do you know how your counts have been on the previous 3 month check-ups? If you counts have returned to near normal it probably means that it is not necessary to do a blood check at each oncologist visit now.
That is how it worked with me. After 1 year I returned to my GP for yearly physical and blood work was done at that time. This could be the line of thinking that your oncologist is looking at.
I know how unsettling the first several follow-up oncologist check-ups are, but as time goes by, if you are doing well, things will begin to change. I hope this gives you some help to cope.
God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 05 2013 at 11:19pm |
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PHCA,
Do you know what type of blood tests you were getting? I still get the Metabolic Panel and WBC blood test at each visit. My first onc did tumor marker tests, CA 27.29, and there seems to be some discussion whether tumor marker tests are accurate or worthwhile for normal monitoring. Some oncs do the tumor marker tests and others don't believe in them. Could that be the test they were talking about? Donna
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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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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Nov 06 2013 at 11:47am |
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PHCA, I had blood work after 3 months post chemotherapy (before rads) As well as before surgery. They did no blood work up on me after I finished my rads either. I have always had fairly decent white and red blood counts.........I did go to my regular PCP in July and had blood work which was all normal. What surprised me more - I finished Chemo end of Dec........when I went in Sept. he said it was time for me to go every 6 months!!!! What??? I was under the impression that it was every 3 months for the first year but he said no.......so I see him in March!!! Seems like a long time to me!! I will be having a mammogram in Nov. and seeing the surgical onc so that makes me feel a bit better. I was super surprised that my PCP who has been seeing me every 6 months because of other issues told me I looked great and I'll see you in a year!! |
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Nov 06 2013 at 7:39pm |
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Hi PHCA,
The latest recommendations for post treatment follow-up call for not doing any bloodwork. If you have concerns, you might consider talking to your PCP and they might run it for you. The end of treatment is very much like stepping off a cliff, in my opinion; a very scary time! Best of luck, Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 06 2013 at 8:21pm |
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DebB,
Really? Wow, that's a step backward's in my opinion. Luckily none of my doctors follow that advice and I hope they don't start. 4 1/2 years out (with a recurrence) and I'm still on the 3 month schedule but glad I'm being watched closely. It's a little nerve racking when it's time for the visit, but I know they want to stay on top of things. Donna
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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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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Nov 07 2013 at 3:47pm |
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Donna,
The ASCO recs that are about a year or so old call for no labs, no scans. I went round in circles with them over the MRI alternating with Mammo. I haven't had labs from the onc since January, which was my last official trial visit. My primary did them with my check-up but that is it! My concern has always been how do you catch developing situations that would show up in routine bloodwork if you don't do it? I understand why they don't do tumor markers and can live with that, but I would feel more comfortable if they watched some of the routine things! Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 07 2013 at 4:16pm |
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Deb,
That is scary! |
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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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cheeks
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Joined: Jan 14 2011 Location: North Carolina Status: Offline Points: 676 |
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Posted: Nov 07 2013 at 5:28pm |
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That is scary. When I reached 3 years and moved from Florida to North Carolina I started seeing an oncologist at Vanderbilt. She sees me every 6 months and does labs each time. When I was there in June she ordered an abdominal CT because my liver counts had increased from my previous visit...all was okay.
I'm scheduled for my next visit the first part of December and labs are scheduled the same day. I think labs are are important even if the markers aren't included. Blair |
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Lump found 11/08
DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018. |
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hopeful57
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Joined: Jun 24 2013 Location: Unites States Status: Offline Points: 63 |
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Posted: Nov 07 2013 at 6:04pm |
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Hi, I am so confused as to what will happen once I am done radiation..... so any advice is more than appreciated. I will be finished 28 radiation treatments next week. Have already done 4 DD AC and 4 DD Taxol after a lumpectomy. What next? My oncologist says she will see me every two months because this is TNBC but what is the usual protocol? Is there usually a blood test, or an MRI or a mammo or a scan? I have only had one MRI before my surgery--have never had a scan. I see some ladies here talking about "tumor markers" but have never had that checked. Is there a list or something of what I should ask for/look for once my radiaiton is done. I know I have be my own best advocate--just want to be prepared beforehand with what others here have had done. thanks so much, as always. You are wonderful here.
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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Nov 07 2013 at 7:34pm |
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Hi Hopeful,
To be honest, your follow up is going to depend entirely on your doctor. The ASCO recommendations call for an annual screening mammogram and that is it. Period. No bloodwork, no scans. Many facilities, and it seems like the university hospitals in particular, seem to follow this. Typical follow is every three months with a breast exam and check up and other than that, it is asking about symptoms. BUT, the fact that your onc is already saying that they will see you every two months would make me think that they are being very cautious, and as a result might do bloodwork and/or scans of some kind to monitor. It really is up to the doctors discretion. Some will alternate an annual mammo and an MRI six months later. Definitely ask! The other thing that you can do is consider lifestyle changes. LBBC has a TN section that has a podcast and slides that are lifestyle recommendations following TNBC. Early congratulations on finishing treatment! Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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littleradish
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Joined: Nov 02 2013 Location: California Status: Offline Points: 41 |
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Posted: Nov 09 2013 at 4:28pm |
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PHCA
I am new here but also in Orange County. I am supposed to be seeing my doctor every 3 months for blood tests but I am confused as to what they show. I don't understand any of this stuff tumor markers, etc. PS.. If you don't mind me asking who is your doctor. I am wondering if we see the same one as I have been told he is one of the best in OC so now I am wondering if the blood tests won't be happening. |
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Diagnosed March 2013, TC chemo from April-July 4 rounds. Double mastectomy Aug of 2013 clear margins and no lymph nodes involved. 4 rounds of gemzar and cisplatin September to October
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PHCA
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Joined: Aug 29 2012 Location: Lake Forest, CA Status: Offline Points: 8 |
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Posted: Nov 15 2013 at 11:08am |
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Thanks everyone for the great feedback. I don't feel so panicked about the blood tests.
I really value all of your input
I'm still on the 3 month follow up with my oncologist, who is Dr. John Link at Breastlink in Orange.
I've had a number of people tell me he's one of the best in our area.
I see my PCP every 6 months, and knowing her, she's so thorough, I'm sure she will either verify or decide to run the test. She's the one who found my cancer after I had just had a mammo and given an all clear!!
Best wishes to all for the holidays and continued good results. All of your support sure helps me stay positive!
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littleradish
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Joined: Nov 02 2013 Location: California Status: Offline Points: 41 |
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Posted: Nov 18 2013 at 3:44pm |
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PHCA
Dr Lnk is my oncologist as well. He is one of the best oncologist in the state and the world I have heard. People come from all over the country to see him. I am only about 1 month from chemo and I had a blood test last week. He told me I would be having one every 3 months. I hope that doesn't change. I hope you have a lovely holiday season. |
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Diagnosed March 2013, TC chemo from April-July 4 rounds. Double mastectomy Aug of 2013 clear margins and no lymph nodes involved. 4 rounds of gemzar and cisplatin September to October
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SuzanneB
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Joined: Jan 04 2014 Location: New Jersey Status: Offline Points: 3 |
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Posted: Jan 04 2014 at 2:59pm |
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I finished treatment 2 years ago Thanksgiving. I had a lumpectomy, dose dense chemo and radiation. Since my mother had had breast cancer I wanted a double mastectomy, but both my surgeon and oncologist said that was not the protocol. Got a second opinion at Sloan Kettering, and they agreed. Since then I have only had mammograms once a year and blood tests every three months. I've asked the doctor about other tests and he says only if I have symptoms. But, I never had symptoms in the first place. I asked about a PET Scan and he says it gives a lot of false positives. I am waiting for the other shoe to drop. I'd like to be on top of things, but don't know what I should be looking for.
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Kellyless
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Joined: Jun 18 2009 Location: Dallas, Texas Status: Offline Points: 1154 |
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Posted: Jan 05 2014 at 11:04am |
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I was 4 years out from treatment last September. I have Mammo every six months (at 5 year they go to 1x year) and see surgical oncologist every 6 months. See medical oncologist every 3 months but blood work every 6 months unless I report issues. Still see radiation oncologist 1x year.
I wanted a breast MRI every year at least, my breast surgeon said he didn't because the scar tissue in my breast will continue to change and under MRI will give "concern" and I'd be getting unnecessary biopsies. He's RIGHT. I had two followup MRIs and 2 unnecessary biopsies. I quit with them, stick to the mammograms. I think it scares everyone to finish treatment. We are in treatment for so long, doing something weekly or even daily for months and months - actively fighting cancer! Then bam - you're done, go home, see y'all in 3 months! It's a very frightening time, immediately following treatment. All your friends and family think you should be jubilant, not to mention back to "normal". They should probably give us all a few months of post cancer treatment psychological therapy, lol. To get used to our "new normal". |
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
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My threesomes
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Joined: Oct 21 2013 Status: Offline Points: 12 |
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Posted: Jan 05 2014 at 1:29pm |
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OMG Kellyless you are reading my mind. I finished chemo on September 12th and had a masectomy on October 4th but now I am so nervous, before I would see my doctors bi-weekly and have blood test so I knew where I stood in my fight against cancer. I am now in NED status which is great but why am I not as excited as my family and friends. I mean I am but in the back of my mind I am so afraid it's coming back or is back and I am doing nothing. I know this sounds silly but I go back and forth with my feels. In front of everyone I am strong but at night I read survivor stories of women who have/had TNBC and wonder will I be one who has a recurrence. I have severe insomnia which allows my mind time to wonder. I lost my Mom to breast cancer in October 2012 I just found out she did not have TNBC but was estrogen/ progesterone positive and Her1 negative. Why did I get TNBC.
I spend hours up at night trying to figure out my feelings. When willi be at peace with myself. I realize this message is confusing but so am I. |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 05 2014 at 2:10pm |
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Mythreesomes,
You're feeling like how most of us feel when finished with treatment. It's almost like we're abandoned with nothing but a "hope it doesn't come back" feeling. We're not in active treatment and left feeling like we're not doing anything to keep it from coming back. The nighttime is the worst when our minds are left to wonder. I still struggle with sleep. It does get better the longer you are out from treatment and NED. I had one oncologist suggest journaling before bedtime to help get the thoughts out and down on paper (or computer). I just want you to know you are not alone in your feelings. Donna
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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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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Jan 05 2014 at 3:45pm |
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Oh My Goodness!!!
They have to find a cure for this insidious disease. I am a 7 year breast cancer survivor and just getting to the place that I let myself feel a little confident that I will be OK. This scenario of fear of recurrence, insomnia, fear of trying to begin to live again, has taken a toll on so many of us sisters here and so many that we don't know about. When I read the posts from Kellyless, My Threesomes, Suzanne B, hopeful57, littleradish, and all the others, I have flashbacks to when I was where you are.
One of the reasons I keep posting is to try to offer hope for all who are in this time of "after treatment anxiety". If you can, find someone who you can be open and honest with. When you feel the need to express what you are feeling, do so. Also, Donna's suggestion about journaling is great. Putting our thoughts and fear in print can be very healing, emotionally. It is such a complex time in our lives when we are trying to become a "new me" and everyone wants us to be the "same ole' me"......
As you can see, WE UNDERSTAND. Keep posting and we will all work to help each other through this journey.
Love and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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nancykind
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Joined: Mar 15 2012 Location: so adks, nys Status: Offline Points: 192 |
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Posted: Jan 06 2014 at 9:43pm |
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everyone's follow up is so different, it can be very confusing and sometimes frustrating. i'm on 3 month bloodwork and i see the onc a week later to get results. i too hope that doesn't change!
i had him convinced to obtain approval for yearly mri's by reminding him how invisible my cancer was, but then i decided that i needed to get the other mastectomy done instead. i am 100% happy with that decision. the cancer didn't show up on the mri, so i don't even know why i was asking for them! and i'd never be able to get approval for a yearly pet scan from the insurance co. these days, i'm sure. love and light to all of us! |
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Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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