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Topic: Scans after breast cancer treatment?

Forum: Triple Negative — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Jan 24, 2011 09:00PM

meegnjay wrote:

I was diagnosed at age 38 with triple negative breast cancer  December of 09, stage 3b 8.5cm. tumor. I have gone through a double mastectomy, radiation, and 4mths of chemo then after surgery another 3mths of chemo ( I still had a 1cm tumor so I had more chemo after surgery). I am having a chest mri this week but that is all my dr. is doing for scans. I really would like my whole body but he says there is no need for that.......What scans are breast cancer pts. getting after treatment, should I push for more scans??????

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Posts 1 - 21 (21 total)

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Jan 24, 2011 09:14PM hydeskate wrote:

I get either a Chest X-Ray or CT Scan of Chest every 3 months, I am TNBC and Stage IV.  My dr. told me the reason why she was rotating the scans has to do with the amount of radiation I have alerady had,  she didn't want to create any more problems on top of my cancer. I have also had a Pet Scan whole body every year since my diagnois. I am currently NED (no evidence of dieseae).

http://heidiy13.blogspot.com/

Dx IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER2-Chemotherapy 03/08/2008 AbraxaneChemotherapy 10/25/2008 AdriamycinSurgery 02/12/2009 Mastectomy (Both); Lymph Node Removal (Left)Radiation Therapy 07/01/2009 ExternalChemotherapy 08/04/2009 Abraxane
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Jan 24, 2011 09:22PM alex56 wrote:

I was diagnosed Dec. 09 too, although not triple neg.  Left side mastectomy, 7 weeks radiation, and now arimidex and zometa.  My first CT and bone scans were shortly after the surgery and they revealed the bone mets.  After I completed rads, they do CT (chest, abdomen and pelvis) and bone scans every 3 months.  Since I'm stage IV and have been stable on the hormonals my docs are not having me do chemo until something turns south.  It seems though that they would want to monitor you regularly.  Maybe second opinion time?  My docs like to compare the scans and tumor marker results to make sure both tests line up to show a whole picture.  If they ever see something on a scan they don't like we can jump right on it.  You should have your onc explain his reasoning to your satisfaction.

Dx 12/2009, Stage IV, Grade 2, 20/25 nodes, mets, ER+/PR+, HER2-
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Jan 25, 2011 07:52AM chinablue wrote:

I was diagnosed July 09, right mx with diep recon, chemo and then rads. My doctors do not recommend any scans unless I have symptoms.  

About 4 months ago, I had a bad back ache and I went to my internist.  I expected her to tell me to take some advil, but she ordered a MRI and a bone scan.  Thank god everything came back clear. 

Dx 7/7/2009, IDC, 3cm, Stage IIIa, Grade 3, 3/24 nodes, ER-/PR-, HER2-
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Jan 25, 2011 08:22AM nowords wrote:

I was diagnosed in April of 09...had DD AC X 4, surgery for 10+ ILC tumor, tamox and rads. I had MRI before surgery, PET after. 18 months out I had a mammo on remaining breast and MRI. Headaches that would not quit, sent for MRI...negative. My Mayo Clinic Oncologist and team do not advocate tests and scans unless symptoms present. My Oncologist stated that knowing ahead of time, does not change the prognosis...so unless I have pain, I don't want to know.Just my preference. I know many are comforted by scans etc. Whatever gets you through the night I think...

Dx 4/6/2009, ILC, 6cm+, Stage IIIa, Grade 1, 7/22 nodes, ER+/PR+, HER2-
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Jan 25, 2011 08:38AM westiemom wrote:

My oncologist only recommended a chest x-ray, told him I wanted a head to toe scan, he didn't feel it was necessary but I do and in addition I will know the "state of my body" once the scan is complete, it will ease anxiety. So bascially, upon that point I didn't ask, I told him my preference was a scan. He agreed to a full body scan which I will have in March, this is one full year after my diagnosis. We haven't discussed if this will be a PET or CT Scan and I'm fully aware both have pros and cons in identifying tumors but again, it's more detailed in what I want, than a chest x-ray.Also, waiting one year is more beneficial in terms of my insurance paying for most of it as well. Best of luck to you!

Dx 2/24/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Jan 25, 2011 08:56AM, edited Jan 25, 2011 08:57AM by lorrhaw

What a coincidence for this to be the first post I read this morning.  I had dinner with 3 friends last night, all with different stages of breast cancer (and yes I met these friends through the forum) and a large part of our conversation centered around this topic.  Based on our conversation it seems that it depends on the stage of breast cancer.  I was diagnosed Stage IV in January of 2010 and had 2 surgeries, 6 rounds of FAC chemo and 35 radiation treatments that I just finished in November.  I am scheduled for a whole range of tests at the beginning of February including PET, ct, bone scan, mammography, etc.  The other women aren't being scanned as frequently or as intensely so it seems that it might be based on staging.  Part of the reason for my testing could be that I am being treated at MD Anderson and I was originally part of a trial, that I was kicked out of, but they still want to follow me closely since I had all of the treatments called for in the trial.

Not sure if I helped or confused things but it is a very interesting question.

Lorraine

Diagnosis: 1/8/10, Stage IV, 1 met ER,PR +, HER2 negative

Dx 1/8/2010, 3cm, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2-
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Jan 25, 2011 01:56PM Suze35 wrote:

I was diagnosed in September 2010 (Stage IIb-IIIa), and have 3 chemo treatments left, then surgery and rads.  Because I am TN and have positive nodes, my doctor will give me a PET scan 8-12 months after my last chemo, to rule out a quick progression.  I had one before we started treatment which was clear, but that can't definitively rule out Stage IV.  After that, I won't be getting any scans unless I have specific complaints. 

I'm okay with this - I want that first all clear, which will ease my mind that I wasn't Stage IV from the start.  But after that, I don't want to be stressing about scans, which knowing me, I would do.

Original dx Stage IIIa TN 9/2010

Dx 9/19/2011, IDC, 6cm+, Stage IV, Grade 3, 8/12 nodes, mets, ER-/PR-, HER2-
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Jan 26, 2011 02:20PM kegparsons2 wrote:

I had a full PET Scan right after a bi-lateral (both) mastectomy because I ended up triple negative.  At least I have a baseline to compare against, but the full PET goes from the neck to the knees only.  Drs are worried about the amount of radiation from the CTs/PETs etc, but my attitude is that if there is a non-invasive view of something I'm worried about, I'm going to push them for it and I keep all copies of all the results.  We do know our bodies better than anyone else and finding out sooner rather than later is key. 

Kathy Parsons

Dx 4/10/2010, IDC, 2cm, Stage IIb, Grade 2, 0/14 nodes, ER-/PR-, HER2-
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Jan 26, 2011 03:13PM charlene333 wrote:

Hi, on Monday, I finished my last rad. tx (33 total).  That was after 5 months of chemo for triple negative.  I worked during most of my tx but am now taking a wk off as I'm very tired, and scared.  All the tx is over now, and what's next I'm feeling.  These few days off from work have given me too much time to think about the what next, and how my husband handled (or not handled) the whole situation.  He's exhausted!  Told my daughter over the weekend that he's had to pick up so much of the slack that he's wiped.  Meanwhile, he never did laundry, never cooks, cleans or anything, but does do the man's heavy work.  I'm now so resentful of him for being such a cry baby.  I want to say suck it up, when we got married it was in sickness and in health.  He really doesn't get it.  Help!  Also, should I have PET Scans?

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Jan 26, 2011 08:15PM lrr4993 wrote:

I don't understand the theory that scans don't change the prognosis.  If you found a tumor sooner rather than later, doesn't it improve your chances of treating?  

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Feb 3, 2011 07:28PM yellowdoglady wrote:

I think different doctors do this differently.  Mine thinks that TNBC is such an aggressive beast that it's a good idea to do a full body PET/CT once a year until the third anniversary.  I'm okay with that.  Some patients get nervous and worry themselves senseless, even if all they ever get is good news.

If a full scan will help you sleep better, ask for it. 

   

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Feb 14, 2011 12:13PM chinablue wrote:

yellowdoglady - which doctor is recommending a full body PET/CT scan (onc, bs, internist, gyn)?

Dx 7/7/2009, IDC, 3cm, Stage IIIa, Grade 3, 3/24 nodes, ER-/PR-, HER2-
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Feb 19, 2011 06:23PM luvmywife wrote:

I believe its all money!! I am so upset with myself for not demanding full scans both during initial treatments and during radiation.

CT scans don't seem so detailed. Then they do PET or mri. My wifes CT was Clean. A week later her neurologist ordered a brain mri out of an abundance of caution. Result 2 brain spots- leading to chest scan leading to lung mets.

What does that tell you??

Dx 2/14/2011, DCIS, Stage IV, 3/11 nodes, mets, ER-/PR-, HER2-
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Feb 20, 2011 01:56PM chinablue wrote:

luvmywife - Sending hugs to your wife and I wish you both good luck.  Did your wife have symptoms that caused her neurologist to order a brain mri?  Why was she seeing a neurologist? Just curious, listen with all that is going on in your world, if you don't have time to answer, I completely understand.

Dx 7/7/2009, IDC, 3cm, Stage IIIa, Grade 3, 3/24 nodes, ER-/PR-, HER2-
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Mar 1, 2011 11:44AM jloon wrote:

YES!! You must get a PET scan! I had a double mastectomy just this past October - 6 weeks later I had CT scans of chest, lungs and liver and they all came back clear. One week later I paid to have a PET scan at a private clinic (there is only one in all of BC Canada) it came back showing extensive mets to bones, liver and locally - actually there was one that was over 3.5cm. My oncologist wanted to start me on supportive (palliative) care. I immediately found a new, highly recommended for thinking outside the box dr. I started right away on Gemcitibine, Cisplatin and Avastin. I just had another PET scan and the results showed that all the distant spreading to bones and liver are GONE - only one tiny spot could be detected in my auxilla which could be an inflammatory response to treatment. Please, please please have a PET scan done - I really think I caught the spreading at a very early stage and that is why it responded so well to treatment. You can email me at jloon@shaw.ca if you have any other questions.

jloon@shaw.ca

Dx 5/4/2010, IDC, 6cm+, Stage IIIc, Grade 3, 19/19 nodes, mets, ER-/PR-, HER2-
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Mar 15, 2011 04:52PM yellowdoglady wrote:

Chinablue,

 It was my radiological oncologist who recommended it because it was a year ago that I had one when there was a concern that the beast had gone to my bones.  It hadn't; I had just cracked a rib, but I'm one of those people who likes to know exactly what is going on and plan my course from there, so I'll do the deed if the medical plan will pay for it.  If this one is clean, I'll ask again in a year.

I know that there is a school of thought that scans don't alter the overall statistics, but my feeling is that statistics mean less than nothing when you are talking about a sample group of one.  Especially, when that sample group is me.

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Mar 19, 2011 01:17AM yellowdoglady wrote:

Good for you, jloon!  The sad thing about having an illness like this is that you have not only to recover, you have to advocate for yourself as well.  Thankfully, gone are the times when women went quietly and did not complain. 

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Mar 19, 2011 01:26AM yellowdoglady wrote:

Irr4993,

Yes. indeed.  The sooner the better.  That's why so many of us like regular scans.

If a TNBC person has no scans and has symptoms that should call for scans and does nothing, well, she may end up in that group who end up with a short shelf life.  I think we are all here to prevent that.  

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Mar 19, 2011 02:15AM yellowdoglady wrote:

Charlene,

Everyone handles these crises differently.  If a man is accustomed to having a lot of support, and it is missing because the supporter is sick, he can behave well or badly or a combination of the two.

Telling everyone that you should be on your feet and moving or nothing will get done is a problem.  Whining that he does everything and not everything gets done is a problem.  He is taking credit for doing all of what you did and leaving the rest for you to do.

There are other forces working here.  The man may be so terrified he would rather run than be there for you, but you should ask that he stay and fight if you still want him.  He may or may not, but at least you will know.

Just to let you know, I married five months back.  I'd said for years that I never would again, but if someone is okay with sitting beside you holding your hand and keeping you company while poison is pumping through your veins, well, they are a keeper.

We now clean the house together.  I cook like hell on Saturdays and Sundays and he washes the cars and cleans the pool and vacuums the house.  I do laundry, and he cleans the wood floors.  The kitchen and bathrooms and tile floors are usually mine, as are the wood furniture and the weekly shopping.  The garbage and recycle, and bottle returns are his.  But if I need a bit of help, all I need to do is ask, and likewise.

What is key is appreciation for what a person brings to the table.  Be sure you have that or at least talk about it.  There is no need to be treated badly.  And if the kids are being told you aren't lifting your weight, you need to speak to them.  Tell them what you have been doing and how hard it has been to do all that while in treatment.  Tell them how much you appreciate how much they have handled.

Do not let someone sweep you under the rug and expect anything from you.  Please.

   

         

   

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Oct 2, 2013 10:46AM Pam8686 wrote:

Yes. After my treatment. I am stage 3 TNBC, my doctor ordered at echo of my heart, tumor markers, and at CT scan. Go with whatever your insurance company will pay. My CT SCAN is today and I am just as scared as the first one. Be strong and be your own advocate

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Oct 2, 2013 10:49AM Lori678 wrote:

Good luck today, wishing you only good news...

Dx 10/15/2012, DCIS, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER-/PR-, HER2-Surgery 11/08/2012 Lumpectomy (Left)Radiation Therapy 04/27/2013 External