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Question re follow ups during neoadjuvant Therapy

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GrammaSue View Drop Down
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    Posted: Aug 18 2017 at 11:04pm
I have undergone now 7 months of neoadjuvant therapy for TNBC. I am down to my last treatment with Paclitaxel next week.

I have read throughout this forum that many women seemed to have their tumors followed up on during their chemo, mentioning ultrasounds and how their tumor may have grown or reduced. My doctor has do no follow ups to check the status of my tumor since the initial diagnostic mammogram and ultrasound, and one MRI prior to treatment beginning. He does a manual check about every other visit. 

I'm beginning to wonder if I've been followed up on correctly. What have others on this forum experienced with (or without) exams during neoadjuvant therapy. 

As I understand once I have this last treatment I will need to see my surgeon about removal of the (hopefully dead but who knows) tumor. I asked my doctor about recommendations (lumpectomy vs mastectomy) but he said that would have to be discussed with my surgeon. 

Also there was an anomaly on the MRI that I received prior to beginning chemo in that although they visualized the tumor in my right breast, something "lit up" in my left breast that was not fully visualized. It was left with one vague sentence on the MRI report indicating it was seen but they didn't know what it was. Of course this worries me because I would like to know whether it is part of the cancer there. That would determine surgery options as well. When I spoke to my doctor he indicated he would check to see if the insurance would cover a repeat MRI (I have Medicare and a supplemental policy). To date I have not received a response from my doctor as to whether an MRI would be covered or not. I certainly can't afford to pay for it myself. 

I'm really feeling kind of "passed over". The center I go to has a good reputation as does my doctor, but I just can't seem to get answers.

Anyone else have this happen?

GrammaSue
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2017 at 6:05pm
You said
<<<   I have undergone now 7 months of neoadjuvant therapy for TNBC. I am down to my last treatment with Paclitaxel next week.

I have read throughout this forum that many women seemed to have their tumors followed up on during their chemo, mentioning ultrasounds and how their tumor may have grown or reduced. My doctor has do no follow ups to check the status of my tumor since the initial diagnostic mammogram and ultrasound, and one MRI prior to treatment beginning. He does a manual check about every other visit. >>>>

My wife had chemotherapy BEFORE(neoadjuvant) any surgery decisions, but she had almost a 5 centimeter tumor, that the oncologist wanted to bombard w/ chemo, her surgeon wanted an ultrasound after 2 chemo sessions, her surgeon said usually they want to do that after 1/3 of chemo sessions, to see if the tumor if responding, staying the same, shrinking, or enlarging, but this all depends on your oncologist, and your specific case.

Your doctor can't tell just from a physical exam if the chemo you had (before any surgery) has been effective. You need an ultrasound and MRI, maybe even a PET scan, to really  know all the information. 


wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Canapoli View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Sep 05 2017 at 10:46pm
That is what I said to my oncologist and surgeon, who don't think I need scans post chemo and prior to surgery. I finally got my surgeon to agree to a mammogram to see how the tumor responded to the chemo. This decision is causing me anxiety because I keep wondering If the cancer has spread anywhere.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2017 at 10:12am
I wouldn't worry (easy for me to say) about your cancer "spreading" ,I mean during chemo, it usually stops everything in it's tracks, in our experience, even killing the cancer in my wife's 4 lymph nodes... not sure why they would do a mammo which could even be painful. They (I'm not a doctor) usually do an ultrasound, which shows the changes in the tumor from neoadjuvant chemo. Every case is different of course. My wife's tumor became more cystic (liquid) after 2 chemos, and the ultrasound technicians said it was a positive development. At least it wasn't growing. My wife's doctors said if it's growing "we go straight to surgery" if it's staying the same, they usually want to finish all sessions b/c it still may be killing the cancer, many have posted here where the tumor stayed the same size but upon surgery the pathology report said all carcinoma was "necrosis" meaning dead tissue, it's the pathology report that is the final word on how well you have responded, perhaps your docs don't think they will be able to tell, like I said, every case being different, my wife's tumor was quite large and aggressive so they wanted to observe the effect after 2 neoadjuvant chemo sessions, as it turned out it killed all but 1.25 cm of cancer, so she needed chemo after surgery also plus radiation.

Upon second thought, I might NOT even let them do a mammogram, they don't show much anyway(they missed my wife's cancer BOTH TIMES, she having dense breast tissue) without a followup ultrasound or MRI, & the pressure could be painful for you, it's not wrong to question this... maybe others here have an opinion.


Edited by gordon15 - Sep 06 2017 at 10:21am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Tulips View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2017 at 10:42am
Hi GrammaSue, congrats on wrapping up chemo!!  

I am about 2.5 years post-diagnosis.  My understanding is that it is not Standard-of-Care to do scans during neoadjuvant therapy.  I do not think ASCO recommends it.  But of course, we, and some oncologists, ARE dying to see scans.  We can't help but be curious.  But if your tumor shrinks or stays the same, the scans would have no impact on decision-making (they would not stop the chemo).  In the rare instances of tumor growth, however, knowing that could signify a change of plan (go straight to surgery).  The good news is that it is very uncommon for tumors to grow during chemo, so perhaps skipping scans during chemo is the healthier way to go (less unnecessary radiation or other toxic exposures such as the contrast used during MRIs).  Scans really aren't good for us.  So if you didn't get scanned throughout your chemo, you are likely better off for that!

However, in my case, I was in a clinical trial for my neo-adjuvant, and a mid-chemo MRI was part of the trial protocol.  I had Taxol first, followed by AC.  But during the Taxol phase, I also had Carboplatin and Veliparib as part of the trial, so after the Taxol/C/V phase, I had an MRI.  To my great joy, it showed no remaining cancer/a clinical complete response.  And then I had AC, and then at surgery time I was expecting pCR but to my surprise I still had some residual cancer ;-(.  Turns out, all those scans aren't even accurate.  I frequently hear of inaccurate measurements and results.  

I guess my point is, since you didn't have them during treatment, you don't need to have regrets about that or even think your oncologist did anything wrong.  However, the question of possible cancer in the other breast would concern me without a scan, going into surgery.  How on earth are you supposed to know if you want a bilateral surgery or just a simple lumpectomy?  If you haven't decided on the type of surgery you want to have, I would think that some new information at this point could help you.  But, if you decided for other reasons (perhaps you are BRCA positive, or you just have your other reasons) that you definitely wanted a bilateral mastectomy, for example, then you should probably skip the scan and just do it.  You'll find out from the pathology what was in there, and you will save yourself unnecessary radiation and expense.  I would suggest having a very good talk with your surgeon.  Good luck!!
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2017 at 4:41pm
Tulips: I think she was wanting to have a scan during neoadjuvant (chemo before any surgery) to see if the tumor is responding. Her docs approved a mammogram, but it is my opinion an ultrasound would be better to see if there are any changes in the tumor.

Any opinions on that? thanks , G
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2017 at 11:02pm
Thank you for your opinion and support.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2017 at 12:41pm
Hi gordon15
I tried consulting another dr in the hospital that does breast surgery for opinion, but she hasn't responded yet. My mammo is tomorrow so I am going to do it, but may ask insist on ultrasound if I can with the radiologist before I get surgery. Thanks for all your answers. It so scary when they say don't delay surgery for any reason other than blood counts yet you are doing greatcoming through chemo. I so worry about metasis,but they say they will follow my symptoms. What if I don't have any? Never had any with this tumor and found it myself when it was a decent size.
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