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Want Your Opinion -- Treatment by Guideline?

Posts: 66
Joined: Jan 2013

Dear all,

At last week's visit with my med. oncologist prior to my last chemo session, I asked her about follow-up care.  I had Stage 1, Nuclear Grade 2, Invasive Lobular Carcinoma with no spread to nodes.  I did four rounds of T/C chemo.  I had a lumpectomy, followed by a double mastectomy, which yielded wide and clear margins.  So, no radiation needed.

My med. oncologist said that I would be on tamoxifen for at least five years.  No surprise there.  She said I would do follow-up visits first at three month increments, then at six month increments, then at one year increments, with blood draws each time.  No surprise there either.  What did surprise me was the lack of interest in doing any scans, MRIs, etc.  When I asked about that, I was referred to the various breast cancer treatment "guidelines."

I'm really irked and disturbed by this answer.  About a month prior to my diagnosis, I had labs drawn at my annual ob/gyn visit, including a comprehensive metabolic panel.  Those results were completely and totally normal.  The only reason my cancer was found was because I was insistent that there was a lump on my breast and not convinced that it was "probably nothing."  If not for my aggression, we would have never found this ultra sneaky type of breast cancer.

If I had followed the "guidelines," I may not have had a mammogram for six years (I was 34 at the time of diagnosis).  I probably would have been at an advanced stage of cancer at that point -- if I had survived at all.  It sounds like my med. oncologist may not be willing to deviate from guidelines, to acknowledge that I am already an anomaly, or to tailor care to me.  

Do you think I am overreacting?  Do you think the plan that is called for yields a realistic chance of a recurrence actually being detected quickly?  Should I start shopping for a new med. oncologist?  Thoughts welcome.


Angie2U's picture
Posts: 2992
Joined: Sep 2009

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


Posts: 1191
Joined: Dec 2010

I don't know much at all about ILC, since I had DCIS. The one thing I have learned about it from some of the ladies at breastcancer.org is that ILC is a very sneaky breast cancer and is good at hiding from scans.

Breastcancer.org has a forum devoted to ILC (among others). I would suggest you ask on that forum as well as here. I know you will find many many women on their with ILC and I'm sure they can help you find the guidelines you are looking for.

Have you also tried the National Institute of Health website for cancer at www.cancer.gov, or the NCCN(National Comprehensive Cancer Network, cancer.org, or the informative pages at breastcancer.org? I had to do a lot of digging around to find guidelines for my type of cancer with my type of surgery as well. There wasn't and isn't a whole lot of specific information about it.

Did you have reconstruction? I am not sure if that plays into things as I didn't have it...I  know some ladies save the skin and nipples.

I know that having cancer younger can make  you more at risk for a more aggressive cancer. I am not sure if I am wording it right, but it is something like that.

If I had had ILC in my 30s, even with a double mastectomy, I would still worry about reoccurrence, just because ILC is so good at hiding.

I feel bad that you had to fight for your voice to be heard that you had a lump. I certainly have had my share of fights with my other medical conditions.

Like I said, I would check out those websites and go to the ILC forum on breastcancer.org and find out what the other people with ILC similar to yours with similar surgerical treatments are doing.





Posts: 66
Joined: Jan 2013

This is really helpful stuff from everyone so far.  I just talked to one of my breast cancer friends who told me that her surgeon has been the one ordering her scans.  So, it may be that in our little corner of the world, the oncologists let the surgeons take care of that on the routine follow-up visits.  This would seem to make some sense, as all of my original scans post-biopsy were ordered by my breast surgeon.  She seemed to know which ones would lead to ILS lighting up, and indeed it did a few times.  Before I throw my oncologist under the bus, I'll reach out to my surgeon to see if this is going to be our protocol.  If no one is ordering these tests, it will be time for me to go doctor shopping.

I really appreciate all of the responses.  THANK YOU!


Double Whammy's picture
Double Whammy
Posts: 2805
Joined: Jun 2010

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. Expand | Collapse 
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.



New Flower
Posts: 4299
Joined: Aug 2009

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

SIROD's picture
Posts: 2199
Joined: Jun 2010

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. Smile



camul's picture
Posts: 2541
Joined: Dec 2010

feel free to get a second opinion.  I have found that every onco has their own ideas and what they will or will not do.  My onco did regular checkup every 3 months with bloodwork for about 4 years, then we moved to every 6 months.  But he did do scans when my syptoms warranted it, or if I asked. 

I had full scans, MRI/PET/CT 9 months b4 being diagnosed with mets, and all showed ned!  Scans didn't stop it, didn't catch it until the beast decided to show itself.  When it did show, the tumors were in most of my bones and some skin tumors that when biopsied came back as IDC Breast Cancer Mets. I was not sched for another onco visit for almost 3 months. 

Now I only have scans based on syptoms! 

Go with your gut instinct as you did with the lump.  Get a second opinion and see if another onco will be more compatable with what you feel you would be comfortable with.  From experience, I know that not all cancers and mets show on scans. 

You will learn to go with your gut instincts!  If you feel something is not right get it checked!


Posts: 3660
Joined: Aug 2009

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


















missrenee's picture
Posts: 2137
Joined: Apr 2010

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

Ritzy's picture
Posts: 4382
Joined: Aug 2009

So far, I have a mammo and  an ultrasound.  I've also always had a MRI as I have scar tissue too.  The MRI has no radiation.  It is uncomfortable, noisey and takes too long, but, I always feel safer having all 3 done.  For me, it is right.


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