Want Your Opinion -- Treatment by Guideline?

No, I don't think you are overreacting, not at all.  To hear those awful 3 words.."You have cancer"...is terrifying and look at all we have to do to fight it.  It doesn't matter if you are stage 0 or stage 4, had rads or chemo or hormone therapy drugs, it is still bc and it is all horrible.

The fear of it returning is real to all of us.  It might not be first and foremost in our minds, but, that thought is always there somewhere. 

My doctors don't follow, I suppose, the guidelines by some.  I am not saying my doctors are better than anyone else's, but, they might order more tests for me and/or follow me more closely, and for that, I am thankful.

I have a mammogram, ultrasound and MRI.  An ultrasound follows my mammo as my doctors feel that sometimes, something can be missed on a mammo.  I have a MRI as I have dense breast tissue and I seem to have a lot of scar tissue still and they just want to be positive that it is just that, scar tissue.  And, so far, so good!

Perhaps to some, that is too many tests, but, my husband and I both agree, that I'd rather have too many, than not enough and for something to be missed.

I think I would be a bit "irked" too if my doctors said to look up the guidelines.  So, you are right in your feelings about that answer in my opinion.

Could you tell him that?  That you don't agree with the "guidelines" and would like a more aggressive treatment inre to tests etc?  If he doesn't seem open to that, perhaps you should get a 2nd opinion.

I don't know if my reply helps you or not.  I just want you to feel confident in your treatment.  That is so important.

Hugs, Angie

Dear M,

You don't want to be exposed your body to more radiation than you have too.  MRI's are costly though they don't give radiation exposure.  However, I have found if you are determine and want a scan, a doc can be found to order one.

Myself (stage IV) I don't have scans unless there are symptoms to warrant them or to learn if a treatment is working.  Blood test for bc don't work on me.  

I asked for my recent scan as I had symptoms and knew the cancer was active again.  I would never have asked for one otherwise.  My oncologist gave the order when I listed my symptoms.  I knew what the results would say before I even had my copy of the scan report.

Finding stage IV cancer (cells that have moved to a distant organ, bones, liver, lungs, brain and etc) early or late = the outcome will be the same.  Early your in treatment longer, late options are limited but it does result in death eventually no matter what as there is no cure or any insight to date.  I agree with Dr. Susan Love too.  There is always the hope that something will come up on the horizon and a cure will be found.  However, since breast cancer isn't one simple disease, it would have to be something at the cellular level that would fit one size.

It is good to remember that 70% of women don't ever have a recurrence and you have done everything in hopes to be included in that number. 

Best,

Doris

Double Whammy said:

Dr. Susan Love's Breast Book

If you don't have this book, I highly recommend it.  It did more for me to help put my mind at ease about my own followups (well, maybe it was just time) than anything.  It is straightforward and talks about everything they don't know about this stupid disease, so it can be a little concerning.  It's a big book, has a wonderful explanation of all kinds of breast cancer, treatments and follow ups.  You can also get a lot of information from her website.  Here's an excerpt from the website section on survivorship:

The truth about blood tests, X-rays, and scans.

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There isn’t a lot we can do to detect recurrent cancer, aside from regular checkups and mammograms. Unlike primary cancers, recurrent cancers do not have a better prognosis when they are detected early. Many doctors still do blood tests every three to six months. This may include a blood count (CBC) as well as CEA, CA 15-3, CA 27.29, and liver blood tests. Many patients and physicians assume that using these tests to find metastases early improves outcomes. Unfortunately, we have lots of data that this is not true. This also holds true for the routine use of bone scans, chest X-rays, and CAT scans. Surveillance guidelines issued by the American Society of Clinical Oncology and the National Comprehensive Cancer Network advise a physical exam every six months and a mammogram every six months for a year or two and then once a year. If you are taking tamoxifen, you should also have a yearly pelvic exam.

 

 My own followup (Stage 1, Gr. 2, IDC - lumpectomy, chemo, radiation) was onc visits every 4 months for 2 years (CBC and chem panel done), exam done every 6 months by surgeon, mammogram yearly and breast MRI yearly.   I'm now having onc visits and labs every 6 months. They tell me I have an MRI because I have dense breasts and because I had a high oncotype score. 

 

And yes, there are "guidelines".  If a physician feels there is a reason to do more, he/she will, but it probably requires insurance approval.  Just guessing on the insurance part, but it wouldn't surprise me. 

Educate yourself so you can know what questions to ask of your oncologist, surgeon, rad onc, etc.  Time will also help, but we have to get there.

http://www.nccn.org/patients/patient_guidelines/breast/index.html#/1/  This is another really good patient resource.

Good luck.

Suzanne

 

I remember how I was shocked when I read them at first. However if your oncologist does not feel that you need a special attention probably your breast suegeon will order MRI (since you cannot have mamo). Self-exams are very important. You need to give yourself a credit for detecting your cancer on the first place and being proactive and persistant in treatment of it.

I honestly disagree with Susan Love about early detection and treatment outcome. Latest published clinical studies have shown that delay in treatment could reduce cancer-free survival and impact quality of life. My sincere believe that each patient is unique and needs to work with her/his medical team to figure out tests and procedures for following up. From my  perspective Staying within guidelines limits is not enough. While I respect Dr. Love, who was one of the first woman breast surgeons and the founder of Revlon Breast center at UCLA, has stopped practicing medicine 10 years ago. Her book is very popular and probably the best describing breast structure, tissue, and disease from a surgeon point of view.  

My doctors do blood work every three months, MRIs every 6 months, and examination. Being on tamoxifen is required more often visit with gynecologist, including vaginal sonogram. 

As far as Scans your doctor should order if you have complains or unexplained pain, however they are not recommended routinly for early stages. Only stage IV  is required those on regular basis.

Good luck with your Chemo

Rague said:

I do not want lots of 'routine' radiation/scans

In the 3+ yrs since my IBC TX ended (still on Femara/letrozole) I have had no 'routine' scans.  I DO NOT want any radiation that is not for a specific reason.  I have had 2 MRI's and a Bone Scan in that time (Also Bone Density Test and Mammos annually).  The first was for pain around and behind right eye that no pain meds would 'touch' but Dex (steroid) would - nothing showed up on the head MRI so it was decided that for some strange reason a nerve had gotten irritatted - 2 weeks of Dex took care of the pain and it has never been back.  I was having some abdominal issues so had a body MRI that also showed nothing and it resolved itself in a couple of weeks.  The Bone Scan was because I was having more pain in my upper back and my PA thought it was probably just my arthritis getting worse but to be sure a Bone Scan was in order - it did show that the artritis as getting worse but nothing else was going on.  I refused twice to have a chest x-ray before surgery.  It is VA policy that before any surgery you have to have a chest x-ray (and EKG) but to me it makes no reason for me to get one so I didn't.  I did explain my reasoning to the DRs and they agreed with me.  The most recent refusal was actually 4 weeks ago today when I had surgery on my wrist.

My reason to be so afraid of non-needed radiation is when I was an infant my tonsils were taken out and radiation was done to my throat to keep them from growing back (common practice then) so I've been told all my adult life to be care of the possibility of cancer from it.  I lived in the West as a small child not to far from where above ground nuclear testing was being done in the '50's.  Where I live now there is a lot of naturally occuring radiation in the soil in many areas and in the water in creeks.  I also burned very bad from my 25 rads so for me there will be no radiation without a definate reason to rule in or out.

I see my Chem Dr every 6 mths - he orders no blood work.  I see my PA every 6 mths which falls in between when I see Chemo Dr.  She been my PC for 16 yrs and is fantastic.  She does blood work every 6 mths and sends her reports to Chemo Dr. so he does get blood work - just not when I see him.

 We are each unique!

Winyan - The Power Within

Susan

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

When I was diagnosed in '09, I had my yearly routine mammo in June and it was read as "normal"--then low and behold a mere 4 months later, I had invasive ductal ca, stage 3C with 10 positive lymph nodes!  Since my breasts have always had dense breast tissue, I always wondered why we didn't do routine ultrasounds or MRIs along with those mammos--since they were always read as "normal" but because of the density of the tissue, not really conclusive.  It was explained that this was not "protocal" but if I ever did feel a lump, they would do further testing.  Well, I never felt a lump--the cancer was so close to my chest wall right on the ribs, it couldn't be felt, but I did have a premonition that something was wrong--I like to say my angels were pushing me to get further tests.

Now, I am the squeakiest wheel in the place.  I have since had a recurrence in the same breast, mastectomy and progression to Stage 4 with the cancer in my spine.  I demand MRIs of my right breast now, ultrasounds and never rely on just a mammo.  Also, we do a PET every 6 months. 

This is just my experience, but I will never doubt my intuition again.

Hugs, Renee