Follow-ups?

kcherub · 07-19-2008, 11:10 PM

Okay, I know this has come up before on various threads, but I would really like a collective "wish list" from you guys on what follow-up I should demand. My ONC. is pretty cool, and will probably give me what I want/need (within reason). Bone scans, MRIs, CTs, CBCs, etc.

I have not had genetic testing yet, so I am also interested in the ovarian consideration.

He does not do blood marker tests, so I have nothing to go on with that. Sooo, based upon your extensive knowledge of what is out there...

What would make you feel the most comfortable?
What would you want?
What would be the most effective?

Thank you, thank you, thank you. I am on a new pain med for my back, so I am quite chatty this late night.

Take care,

Mary Jo · 07-20-2008, 10:32 AM

Hello,

Well that's kind of a tough one. No easy answer for sure. Especially because we are all so individual in what we need....what we want...and what gives us some sort of peace through this journey.

My doc is also "pretty cool"

and bases his practice on that thinking - "individuality" - what is "right" for one woman isn't necessarily "right" for another one. He also seems so have that "sense" when he knows that a "test" is what we need to get through whatever ache or pain is causing us concern.

That being said.......Being a 3 year survivor, I see my onc. every 6 months. Every 6 months he orders a basic blood panel with tests for liver enzymes and function. He does a physical exam - talks to me and I am on my way. That's all I need and all I want. I've been through 2 PET/CT's, 2 abdominal CT's and a bone scan in the past 3 years and the stress of those was WAYYYYYY too much for me. Also, I've been through a PET/CT where a false positive was found and after months of follow up have come to the conclusion that this is why most oncs. don't do routine testing. It is stressful - false postives occur and occur often, hence, the need for more tests to make sure nothing is truly brewing.

So, for me personally, the old saying "symptoms warrant testing" is what I live by. If I have a concern my onc. takes me seriously and follows through with a test and if not we assume I am fine and life goes on.

As I said before though, that's me....that's what I need for a good quality of life.......what's right for you may be entirely different.

Love to you......

Mary Jo

hutchibk · 07-20-2008, 11:37 AM

When I first completed my initial chemo and treatments, my onc wanted to see me every 3 months. He does follow markers (CA15.3 in my case). Once my initial treatments were done, we did CT of the torso and a bone scan just to have a clear base line. Then I started seeing him every three months and he told me that he was going to continue to see me every three months until we had about 7 years under our belt, then he would consider going to 6 months... needless to say, I love my onc.

At just under one year post treatment, my markers started to rise ever so slightly. At the same time I had a minor surgery to replace my implant, and in that surgery a tiny piece of tumor came off of the muscle with some scar tissue. We also found a small hard lymph node under my arm the subsequent clinical exam. We then did PET/CT and brain MRI and found that I had small spots in chest lymph nodes and lungs, and jumped right into treatment.

So, you can see that there are many ways to monitor and they all can speak to the bigger picture, but in my case, my minor surgery was the god-send. Otherwise we would not have known for sure until 2 months later, when my onc planned to do my yearly follow-up scans... we probably still would have been in good shape at that point and not lost any ground, but I am happy we learned it earlier instead of later.

hutchibk · 07-20-2008, 11:45 AM

and here's what I have learned as far as scans, labs, etc...

CBC - complete blood count, good idea to monitor regularly, every visit.
CT - best view of organs, soft tissue
MRI - best view and measurement of bone spots
Bone scan - can identify bone activity, but if activity is found, MRI should be done for measurement.
Bone density - you need this once a year to follow your osteopenia and osteoporosis potential
PET - used mostly for dxing suspected metastatic disease in most of the body. It won't shine colon polyps and a few other areas that require specialized testing.

You should also get a yearly colonoscopy. And if you still have a natural intact breast, talk to you onc about mammograms.

Patb · 07-20-2008, 12:08 PM

Hi
We are all different and feel comfortable with certain
things. Since I had a lumpectomy, I have Mamos every
six months now. I have had a bone scan because
arimidex causes aches. I just had a full body cat scan
which I think we should all have as a base line to go by.
The scan showed a lung nodule that has to be watched
and the liver, etc. were fine. I have had a brain CT and
MRI. I hate the waiting when I have these tests so I tell
the Dr., I have anxiety issues, please hurry the results,
which they do. Now that I've had these tests, and I
am two years out, I assume they will do CT of lung
every three months and mammos every six and of
course Blood test every time I see oncologist which is
every three months. If I have symptoms, I would ask
for more test. I can only hope I'm doing the correct
thing and just live my life, enjoy, and not give it too much thought each day. I try to live in the Now.
Take care and I'm sure you will get lots of ideas
on this board. Everyone is wonderful.

trailrider · 07-21-2008, 08:07 AM

I am on the same followup plan as Marejo. Symptoms are what will determine whether I have scans. I did have a brain MRI a year ago due to severe headaches. Much to my son's surprise I have a normal brain. In my opinion, waiting for routine test results (other than labwork) is not the way I want to live. My markers were never elevated from the beginning. If I did want more intensive followup I know my Oncologist would oblige.
Followup seems to be as diverse as our individual diagnosis. You and I have similar tumor types, however, I am 52 years young and almost 3 years out. Good Luck, Krista, do what feels right for you. Aloha...on my way to Hawaii tomorrow!!!!

kcherub · 07-21-2008, 06:43 PM

Thanks, ladies! I knew I would get some enlightening responses!!!

Take care,

Becky · 07-21-2008, 07:40 PM

I am almost 4 yrs out and in September it will be my last every 4 months onc visit and I will graduate to every 6 months (which he plans to do for several yrs before I graduate to once a yr). I still see my rads onc every 6 months since I had lumpectomy (on both sides, the left being a very small low grade dcis with NO rads - which everyone on this board knows this makes me more of a wreck than the Her2+ invasive cancer side). I also see my surgeon once a yr and the gyne once a year. Plus my yearly physical with my primary care physician.

When I see my onc, he runs the estradiol level, liver enzymes and blood panel plus the CA 27/29. He also does a breast exam (which all the above docs also do - my primary care also runs my CA 27/29 and the other blood work as well as cholestrol (HDL, LDL, triglycerides).

I don't do other scans. Did a brain MRI as a baseline as well as CT of the abdomen, pelvis and chest and a bone scan. Did these one year out because like many women on the board, I had alot of rib pain at that time and wanted to rule out possible bone or liver mets.

Until I got my ovaries removed, both the onc and gyne ran the CA125 (ovarian cancer marker) as well.

In early Sept, I will be at 4 yrs and feel very comfortable with myself. I feel I am also very attuned to my body and feel well. I do and believe in monthly self breast exams. I have had some false lumps (a cyst on the left and glandular tissue from surgery on the right) but I found my lump myself and I believe it saved me as it could always have been bigger than it was.

I get a mammo once a year now as most surgeons make you get it twice a year until you've passed year 3. I plan to start getting an MRI or a dilon (BSGI - breast specific gamma imaging) at the 6 month and a mammo the second 6 months. Just had clean digital on July 7 so after the new year I will plan my new test.

Peace,

harrie · 07-23-2008, 12:04 AM

Krista, thank you very much for starting this thread. It is a topic I have often wondered myself and discussed with other survivors.

I am BRCA2, so I had my ovaries and tubes removed. My oncologist has me on 6 month exams with him and he does the blood workup which consists of cbc, complete metabolic panel, CA15-3.

The next time I see him I am going to ask him, since I am BRCA2 positive and it increases my risk of pancratic cancer a bit, and my grandfather died of pancreatic cancer, would it not be a good idea to get a PET or CAT scan of my abdominal area?

What do you all think: for stage I, do they ever recommend PET or CAT scans for monitering?

Maryanne

DanaRT · 07-23-2008, 04:59 AM

I have asked both of my oncologists if they will follow up with CT and/or PET scans. Both agree only if symptoms warrent. Of course, every ache, pain or twinge send me in to a mini-panic that the cancer has moved or spread. My next mammo will be in October-11 months after dx. This must be protocal for stage 1 breast cancer patients.

Dana

tdonnelly · 07-24-2008, 09:11 AM

Hi Krista,
Is your back pain since finishing treatment? I have alot of pain/discomfort in the middle of my back; its hard to stand for long periods of time. I had a bone scan last Dec which was ok. Never had problems with my back until finishing treatments. Not sure what to do?

I see my Rad. dr every 6 months for follow-up. My Onc. every 6 months and Surgeon. I had a full Mammo 4 months ago and in Sept. just a partial Mammo for lumpectomy site. I see Onc on Tuesday not sure what tests/procedures she will suggest. She does not do markers. Since my last Herceptin treatment was very difficult due to Thyroid disease we have to decide what is next course of action if cancer spreads-Herceptin has been too hard on me.

I want as few tests as possible...
Tamara
Invasive Ductal Carcinoma 10/2006 HER2+