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mindy555 View Drop Down
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    Posted: Jul 14 2012 at 6:00pm
Hi TNBC fam!

I have this question in for my doctor, but wanted your feedback & experience.  I simply haven't done research in this area yet.  

I'm on a 3-month schedule to see my oncologist at MD Anderson now that treatment has ended.  My first is coming up the 23rd.

What tests and type of exams can I/ should I expect?  My schedule shows lab & it looks like maybe urine samples, then I see my doctor for an exam.

Can you tell me more about what they look for in the blood work?  I've heard much about tumor markers here and on facebook forums,  yet honestly don't know a thing about them.

TIA!
Mindy
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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mindy555 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2012 at 6:25pm
I wanted to add to the above a bit more without editing.   But... that ain't gonna happen.  My QOE (queen of editing) reputation remains unscathed.. my crown is firmly affixed to my head.  **Whew!**

My oncology surgeon says she won't need to see me again and added very sweetly, she's always available for me.. anytime.  She's a fantastic person and surgeon.

SO.. during my last trip when I consolidated several different appointments, my MO said "I hope you don't mind you're stuck with me every 3 months for 5 years".  Of course not only do I "not mind"... there NEEDS to be regular follow-up.

The lovely & compassionate reconstructive surgeon and I will have an ongoing relationship for quite some time too, it appears.

I'd expect a thorough physical exam including breast exam for local recurrences from my oncologist.  However I'm uncertain what she looks for in lab work & UA.  Considering I had a BMX what other testing would fall under the follow-up guidelines?  (yes, these are questions I will ask of her too)

Some docs, like my local MO (whom I haven't seen in ages) don't believe in yearly scans OR any scans period- unless there's reasons for concern.  I'm not sure about Dr. G's feeling on that issue and intend to ask in person.

Any of your own experiences would be extremely helpful at this point.  See?  I don't mind showing my ignorance...uh, inexperience.  Thank you.







Edited by mindy555 - Jul 14 2012 at 7:07pm
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 1:31am
Mindy,

Talk about perfect timing.

LBBC (Living Beyond Breast Cancer) July's topic for Ask the Expert is:
          Follow-Up Testing.   Expert: Nancy Lin, MD from Dana-Farber Cancer Institute.
Carey Anders MD and Nancy LIn MD are the authors of the book:
   100 Questions and Answers About Triple Negative Breast Cancer.
http://www.tnbcfoundation.org/100qanda.htm
Note: If one is interested in the book, one might like to get it from a resource center or library
            before purchasing.   I thought the 100 questions would be all about TNBC.   What I found the
            book to be about was information about breast cancer with comments on only some questions
            that related to TNBC. So, if one is looking for a book when newly diagnosed about breast
            cancer, this book will add things specifically about TNBC.   If one is looking for mainly
            the pressing questions and issues on TNBC one might want to check a copy before buying
            to see if it this is the book one is looking for.
Nancy Lin MD has done and is doing research on TNBC.
So.......one can ask away with questions on " Follow-Up testing".......and if one includes with
the question (when appropriate)....as this relates to TNBC.......helpful info may be obtained.
Be aware that all the questions asked are not answered.
Go to:   
http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2012-07-Follow-up-Testing
Submit your question at:
http://www.kintera.org/site/c.ajIRK7NHLeJ4E/b.8204559/k.69D/201207_Ask_the_Expert/apps/fc/form.asp

This is very general information.
Others will most likely be posting their f/u testing.
From other threads and posts, it seems post-treatment f/u is one of the following:
       Interval history and physical exam only.
       Interval history, physical exam and blood tests.
       Interval history, physical exam, blood tests, imaging.
Depending on breast surgery done:
       Breast imaging with mammography with some adding ultrasounds and MRI.

This is what I have had on post-treatment f/u:
     Interval history, physical exam.
     Lab: CBC and diff.
              Electrolytes ( Na-K-Cl-CO2).
              Metabolic Panel - BUN, Creat.   Glucose, calcium, LFT's.
     Mammography: (s/p unilateral mastectomy). mammo at 6 months then yearly for non-surgical side.
Vit D not done automatically. Either I ask onc for it or get it done thru PCP (not every visit).
Thyroid tests (not every visit): don't remember if onc did or PCP checked.
I asked for a post treatment perometer (device to measure arm volume) measurement.
      (Think I did this at about 3 and 6 months post op.)
       A measurement done too early after treatment may include post treatment swelling that
             usually resolves on it's own.   However, if there is any question of lymphedema,
             we all know to see our provider ASAP.
      Ideal to have had BILATERAL arm volume/size measurement with perometer/tape measure
            prior to surgery and radiation. Note: if measurements are done by tape measure, one
            needs to consider tape and user variability on different readings - in other words,
            don't panic if there is a small difference.
      If not done pre-treatment, a baseline measurement post treatment is good to have as a
             post treatment baseline.   Do not think getting a pre-treatment measurement is currently
             done in all centers.
      MOST women do NOT get lymphedema.   For the person who gets it, the baseline readings
               (by perometer or tape measure) are important. Most people do not have equal volumes
               in both arms so knowing the baseline difference is helpful.

There have been some prior threads on post treatment f/u.
Right now can find only one:
        http://forum.tnbcfoundation.org/help-what-is-standard-follow-care-after-chemo_topic9006_page1.html
If I find any more of them, will post......or if some one else finds them, please post.
Other thread link added:7/16/12:
          http://forum.tnbcfoundation.org/standard-of-care_topic9860.html

You probably saw the thread: http://forum.tnbcfoundation.org/ctc-negative_topic10113.html
So, at least, one member is getting CTC (circulating tumor cells) on follow-up visits.

With caring and positive thoughts,
Grateful for today..........Judy

Addendum:    Not about testing but still important matters.
      On your post treatment check-up IF you are still having decreased range of motion
             (not back to your baseline level of physical functioning), ask for a PT referral for
             evaluation and treatment.
             Ask specifically for a physical therapist who is experienced in post breast surgery
             care.   If your provider does not have the name of such a PT, consider the APTA link.
             link to APTA (American Physical Therapy Association):
                    http://www.apta.org/apta/findapt/index.aspx?navID=10737422525
                    Suggest you refine your search by practice area - put " cancer". If no one comes up,
                        try " women's health". Even though a PT name may come up, when making an
                        appointment, ask specifically: What is your experience in providing PT for
                        post breast surgery patients....how long doing it, how many patients a year
                        do you see for this.   If that PT is not experienced in post breast surgery PT,
                        ask for name of one in your area.
     On your post treatment check-up, ask your providers (physician and nurse), what are the
              breast cancer resources (especially for support and post treatment issues in your area.)
              If needed, ask for a social work consult, to get all your local resources.
              If your follow-up is in a physician's private office practice, consider calling the Social
              Work Department at the hospital your physician is affiliated with.
              Also, many Cancer Centers have "Resource Rooms" or "Information Services" etc that
              would have info on the local resources.   
              See also thread: http://forum.tnbcfoundation.org/cancer-support-programs_topic9059.html


Edited by Grateful for today - Jul 16 2012 at 11:17pm
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 9:41am
Hi Mindy,   I was told by my medical oncologist that one of the very important things they look for in the blood work is an elevated blood calcium. It is often a sign of trouble...take care...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 10:19am
Mindy,

Not all oncs will do tumor markers.  It's a different blood test from the normal CBC and Metabolic panel where they check your white blood count, kidney function and liver function tests.  The most common tumor markers are CA 27.29 and CA 15.3.  My first and second onc did tumor markers, but I'm not sure if my new onc will.  Some don't believe in their accuracy so they don't give this extra blood test.

Let us know how your checkup goes!  

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 Hajdenwurcel Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 11:53am
Dear ALL,
Very good point also I will would like to ask to my oncologist for my next consult. Because in Brazil the PET scan is still not approved by Health Security, I think only for lung cancer and lymphoma and what I did until now was MRI after 10 months the profilactic bilateral mastectomy once I am BRCA1 positive. Also they requested me the blood markers and some elements of blood to evaluate the function of liver, etc...My key doubt is as I am seeing some friends had reoccurence in intra mammal linphonodes and other linfonodes and how did you discover that????Physical exam, MRI or PET scan????My point is , for me even I will pay this very expensive exam for us in Brazil , this will give me more security about the results????
Thanks in advance for your feedback!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 3:18pm
My internal mammary node was picked up on a PET and MRI. Not sure if a CT scan would have picked it up as it was still relatively small. You couldn't feel it by exam and I had no symptoms. Blood tests and tumor markers were normal.
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 debB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 7:22pm
Hi Judy,

I also wanted to say welcome to the sight! Glad you found us! It is amazing the way this site has helped join women from all over the world!

Even in the US, the follow-up varies widely by doctor. If you have a doctor that is willing to do MRIs as follow-up, then that is great! As far as paying for other testing yourself, keep in mind, that often TNBC grows so fast that women who had clear scans just a few months ago may still have mets. Sadly, we get no guarantees.

Deb
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 7:35pm
Hey Mindy,

Before starting the trial, I only had what would have been considered one follow-up visit. It is my understanding that they will just do history and routine bloodwork. My oncologist told me tumor markers are only about 50% reliable and often by the time they start to rise, you have physical symptoms, so he does not do them at all. I also will get a typical physical exam. Nothing else. He does say that he wants to know about any symptoms that are 'persistent or progressive' and he will take them seriously, and he truly means it and doesnt mess around!

My surgeon will do the mammogram follow-ups. In November she had told me that they woulda also do breast MRIs after this initial post-op mammogram. I saw her last week and now she tells me that Univ of Michigan now recommends not doing breast MRI until two years post-op so as not to pick up post-op changes/inflammation. With the usual 'dense breasts' I was disappointed to hear this since MRI is supposed to be better for us at detecting tumors. Haha! Auto-correct just changed that to detecting tutors! If only that was all we had to worry about!

I would guess that MDA will follow the company line of no additional imaging or tests, but you never know! Hope you are doing fantastic!

Deb
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote michelle525 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 7:51pm
I finished chemo in January.  My onc does CA27-29.  The way she explained it to me is that the number itself does not necessarily reflect anything, as it can be outside "normal" for any number of reasons or for no reason.  A comparison of the numbers is what she looks for, as a large increase may indicate a mets/recurrence.  My first CA27-29 test after chemo ended was very elevated -- probably because it was done 3 weeks after my last chemo.  The next test was in the normal range.  I have another test next month.  My onc also does a full CBC and physical exam.
My onc falls into the camp of no routine follow up scans.  She will, however, order anything "at the drop of a hat" if there is any symptom.  She too wants to know of any persistent symptoms, which she defines as lasting more than a week. 
 
Good luck at your follow up!
 
Michelle
DX IDC TNBC 1/96, age 30, Stage 2, Grade 3, 3.5 cm, o nodes, lump, rads, ACx6, finished 7/96. 7/11 recur/new, TNBC, Stage 1, Grade 3, 2 cm, BRCA-, mast w/recon. 9/11, CTx4, finished 1/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Hajdenwurcel Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2012 at 9:26pm
Hello Donna and Deb!!Thank you for feedback!!!I will consider your points and let's see what my oncologist will say in my next appointment in August. Definetely this site is wonderfurfull, and sure is helping a lot of people levying far from USA like me in Brazil!!!


Judy Hajdenwurcel 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2012 at 9:50pm
Thanks all for your responses.

Judy- I hadn't seen the threads on this subject.. so, thanks for posting them along with all the other useful information.

I'm scheduled for labwork, then a  Bone Density (DEXA) in nuclear medicine.  After those tests I'll see Dr. G who will do a physical exam.

In answer to my question thru their messaging system to gain more specifics on labs, I received the following: (I requested a Vit. D level test)

"The labwork that Dr. Gonzalez has ordered for you is the following: CBC, total bilirubin, serum creatinine, BUN, AST, alk phos, LDH, ALT. I hope that info helps. I asked Dr. Gonzalez and she was OK with adding on the vitamin d level, so that has been requested for your labs as well."

In person we can discuss more long term follow-up at different intervals- such as scans.  I'm of the camp that I'd feel okay without them unless a symptom prompted such. 



Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2012 at 10:21pm
Oh!.. and I'll most definitely follow-up on this thread once I have some answers and input from my MO on other testing.  Hopefully it might help someone else- although I know oncologists have their own strong opinions and rationale for performing (or not) certain tests.

Judy-  I think I'm good as far as not needing PT.  I'm doing weight training along with Pilates and walking/'running.  It appears I'm as flexible if not more-so than before diagnoses. I was fairly inactive most of 2011.   We're also into road biking and hit the lake trail for a good 10 mile peddle every chance we get. 

My post BSO surgery check up is at home this Thursday.  I'm not expecting anything eventful... But I don't take anything for granted these days.   My cousin in Phoenix had the same procedure a day before mine and is still having problems. Unhappy

Thanks again, ladies.  You ARE the best! Thumbs Up
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2012 at 12:28am
Hi Mindy,

Posting for 2 reasons:

1. Looking forward to any info you get at MD Anderson from your physician re: f/u testing.

2. LOVE your new Avatar - very nice. Just noticed it on another thread you had posted on.


Grateful for today............Judy

ps: Added to my above post:
       "Other thread link added: 7/16/12: "
             http://forum.tnbcfoundation.org/standard-of-care_topic9860.html
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2012 at 12:31am
Mindy - your profile picture is very pretty...

Just sayin

Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2012 at 12:40am
Awww, thanks Judy & Lisa.  I've worked on it so it's not distorted now.  I think I finally got it.  It was time to put a recent photo up.  You're both very kind.

I will indeed report back Judy.  Thanks again for your help!!
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2012 at 4:22pm
Mindy,

I'm late in getting to this post, but I'm so glad you brought this topic up. I had my last chemo on 6/4/12, and had a 3-week follow up on what would have been a chemo day. At that time they told me they would be following me with an office visit (we'll see if they do a physical exam, because they haven't in the past), and labs (which I take to mean my normal bloodwork. for me this seems to include much of what has been posted) every 4 months for the first 2 years, then 6 months, then only annually. 

I asked about scans and tests for circulating tumor cells (CTCs), and they told me the CTCs were not reliable for breast cancer (I think they are more commonly used for ovarian cancer, but note in my case that I'm BRCA2+, so I will be having the BSO surgery after radiation is finished), and they don't do scans. They told me that recurrences "usually make themselves known", and there has been no benefit in overall survival (OS) or progression free survival (PFS) shown by doing scans. Still, it is a little unsettling to not have regular scans done. My radiation oncologist did make me feel better because she did say that our surveillance will be much more than what it would be for the non-cancer patient.

What I'm not clear on is what they will do in the breast area (the remaining breast that is, and the area left after mastectomy). I know that normally you would get mammograms (to the remaining breast at least), but like many others, my tumor was undetectable by mammogram. It was only visible by MRI, and only with contrast. Due to my BRCA status, I will have the second breast removed, but do I consider myself safe then, or do I request to have breast MRIs? Can they even do that if you have no breasts? What if you have a recurrence in the chest wall or an internal mammary node...could these be detected by a breast MRI on someone with no breasts? Sorry for these questions, but it sounds to me like once I have the other breast removed, they won't be doing any scans.

Thanks
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2012 at 4:57pm
Turtle,

I have no breasts and a breast MRI picked up the recurrence in the internal nodes.

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 mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2012 at 12:49pm
Turtle-

The tests for CTCs make sense to me.  As some have mentioned, it's used more of a general trending vs. a diagnostic which leads to more testing.   Yes, you can still have MRIs.  In fact, I'm not as opposed to MRIs as I am PET and CT scans- *without symptoms*.  Does anyone know the difference in radiation exposure between these tests?   If my oncologist insisted on an MRI,  I wouldn't decline.  I too had a bilat mastectomy - so mammograms are out, but not MRIs.   In Donna's case it could have saved her life.
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2012 at 1:05pm
Mindy & Donna,

Thanks for the responses. I used Donna's experience to advocate & ask questions about the internal nodes, which are being included in my current radiation plan. When I talked to my rad onc though about follow up scans, she made me feel like she was saying that when you don't have any breasts anymore, you won't get any scans at all (including 'breast' MRIs), whereas if you still have a breast left, that would be scanned as appropriate (mammogram or MRI). I felt like I should at least have the breast area imaged, but didn't know if this was possible, so I'm glad to again have the benefit of Donna's experience.

Donna, did the MRI you had of the breast area include injection of a contrast agent? (I didn't have problems with any allergic reactions, but am curious to know if this is part of the imaging, because according to my path report, I don't think they would have even seen my original tumor without injection of a contrast agent

Thanks again!


Edited by turtle - Jul 18 2012 at 1:06pm
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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