Post treatment surveillance only once a year?

Hi Tiago, 

I am sorry you are struggling with this. 

I also know that this is easy for me to say being so far out but I am also TNBC and BRCA1 positive and as you saw on the other post I did that I am also 12 years out. 

I am not going to tell you how your wife should be monitored that is a very personal decision between both of you and your medical team but I want to give you a couple of things to think of and I hope that you will take in the spirit it is offered and not think that I am trying to be too impertinent.....

You and your wife are just now dealing with finishing treatments. Remember for the time that you are in treatment the focus is on treating the cancer and killing every possible one of those little cancer buggers. It sounds like your doctors threw everything at it and that is a good thing. Now you are having to come to terms with being booted to the curb and "see ya in a year".  This is very hard to deal with. It takes time to get to the "New Normal" I hated that saying and by golly I still do. I want my old carefree normal but come to find out they are right.

Something to be wary of is "testing begets testing". There are a lot of things that happen in our bodies that are perfectly normal but having had a cancer diagnosis obviously it makes sense to keep an eye on things. This can be a double edged sword as something that would normally be given no extra thought now becomes a situation where we better check it because she had cancer and is brca 1 etc. The question is at what cost? Not just from a medical cost of the toll of the test on our bodies perspective but also from a physiological perspective. (I don't care how much I spend medically so I am in no way referencing the financial cost)  

A lingering back ache now becomes a concern for recurrence or for mets.  The advice given to me was if it is still there 3 weeks later we will check it out.  I questioned this (OMG its back or OMG I am going to die from mets!!)  but I now understand why there is a need to wait. Most of the times the lingering aches went away and when they didn't we got them checked out.  Thankfully they turned out to be nothing over the years.

At the time you and your wife are now at I wanted to be checked every three months too. Dammit I had a young child. I wanted to do EVERYTHING to be here for her. Every freaking test there was because I wanted to stay on top of it. 

My doc said the following. - It has been found that if something is found on a scan the symptoms generally show up very soon after. Does it make sense to do scans every three months that take a toll on your body and your mind that would only make a difference of 3 weeks or so? 

He went on to say WHY he didn't want to do the scans. A CT (CAT Scan) has 100 times more radiation than an x ray and that is cumulative (adds up over the years).  So for every CT scan he would order it was the equivalent of 100 x-rays....Yikes!! that's a whole lot of glow in the dark stuff for one person in one hit. They don't make you wear those lead aprons when you get an x ray because they want to laugh at us in them (although I am sure some of them do), they make us wear them to protect us as much as possible from the x-rays themselves. Do I really want to throw that much radiation out there if there is not a specific reason to do so? MRI contrast and Bone scan contrast also have risks and a toll on our bodies. There are nuclear warning labels on that stuff for a reason.

Another point he made was that every time you go in for an MRI or mammogram you are going to be on pins and needles until you get the all clear. How true is that and I can tell you that is HUGE!! Especially because you have already had cancer they want to be REALLY REALLY sure there is nothing there. That is a good thing but it also takes its toll on our minds. I still trek down there and get them done as recommended and will continue to do so as necessary.

6 months mammo and ultrasound has been the standard for me even with 12 years of BRCA1 If something has come up we have dealt with it but I do not get scheduled scans unless something warrants it. That does not mean I am not vigilant. My oncologist is very on top of BRCA1 and continues to be so. I am comfortable with that now as I know if something comes up, he will address it and if I need to, I can make an appointment to see him as needed.

My personal opinion is that I think the thing to be more on top of is other than the specific timing of the appointments or scans is that as long as you are happy with your team and your team will react appropriately to something out of the norm then it is okay not to have to see someone every 3 months or get scans every 3 months. Your wife will be vigilant and if she finds something or feels something have it looked at if someone refuses then go elsewhere or raise holy hell until it is addressed to your satisfaction.

I know the BRCA1+ is a huge deal and has ramifications down the road. Not only are you dealing with a cancer diagnosis and treatment you also have to understand what the BRCA1 means to her and possibly your children. 

There is no right way or wrong way and there will always be differences in opinion  on what the medical standards should be (especially for the brca) but we and the medical field are still learning and adapting to the information that is still being collected.Things may change over the years as to what the standard should be and that is a good thing because it means they are staying on top of the information and reacting to results of trials etc.There are also differences in standards of the care in different countries as I am sure you have seen while researching with your wife. 

My eternal hope is that someday we can be proactive and prevent cancer as opposed to being reactive and treating it but I know that is a long way off.

If you are still awake reading this-I apologize for the length  but I wanted to provide you with a proper answer with some insight as to why they may not want to do all the testing and to address your concerns and not just give a quick response.

I hope you come to a decision where you and your wife are at peace with and here is to many more years of being cancer free. 

RJ

Hello Tiago,

Regarding follow-up may I suggest getting cancer antigen blood tests?  Provided it is available.  I am BRCA1 & TN and was offered a CA 27/29 and CA 125 test every 6 weeks.  As long as it stayed in the normal range there is nothing to indicate its growing.  One year without follow up is scary.   I wish you and your wife the best.

Well spoken Ozzygirl.  My situation is identical...BRCA1+ & TN and my MO doesn't do anything for survalence for the reasons you've described.  At first I was very put off by it but now that it's a year out I believe the approach has helped me move on vs always waiting for results/appoitnments.

Did she have a lumpectomy? Does she still have one or both breasts?

It is not clear to me if you are talking about screening for a new primary breast cancer, or for a local or distant recurrence of the original breast cancer. Screening for a new primary is quite different than screening for distant recurrence. Screening after a bilateral mastectomy also varies from screening after a unilateral mastectomy or a lumpectomy. 

Surveillance of intact breasts in a BRCA+ carrier/high risk patient in someone who has never been diagnosed with BC here (I am in Canada, but the screening is similar in US) is annual MRI and mammogram (rotated every 6 months), ultrasound if needed/desired, 2 clinical breast exams a year, and self exams. If one has a preventative double mastectomy, the recommendations are usually only for personal exams and clinical exams (the latter 1-2x a year).

After diagnosis, and treatment, it depends more on the circumstances from what I have seen, like whether there was a mastectomy or lumpectomy, when it comes to breast screening. Those with lumpectomies still need their "regular" breast screening. Those with one breast intact still need appropriate screening on that breast. The removed breast usually is not screened beyond clinical exams and self exams, though not always.  

Typically they do not screen in for distant recurrence without symptoms, whether you are a mutation carrier or not. This is the standard of care in both Canada and the US. There are reasons for this mainly as earlier dx of distant recurrence before symptoms does not materially affect outcome/survival. Other reasons have been covered above (risks of radiation, "scanxiety", etc)

So really, it is normal if your wife is not being scanned for distant recurrence in advance of symptoms. The rule of thumb is that if some symptom is persistent for 3+ weeks, go see your oncologist. Whether this is a persistent cough, a painful hip, etc. My mother's recurrence was found 8 years after diagnosis after persistent hip pain/mobility issues. Only then did they scan for mets. 

If your wife still has a breast/breasts, she as a BRCA1 mutation carrier also has to consider she is at higher risk of a new primary breast cancer (meaning entirely separate from her first BC) than the majority of non-BRCA mutation carriers. I do not remember the exact stats, but I recall a risk of a second primary for a BRCA+ woman being in the double digits range (30-40%) in the 10 years after first diagnosis. If she still has one or both of her breasts, this risk needs to be considered in her screening. If she does not have breasts, this would be accomplished with self exams and clinical exams. If she does have one or both breasts she should be looking for someone who will screen her according to guidelines for high risk women (being annual mammogram and MRI, etc).

Has she ever had genetic counselling? They can make appropriate recommendations and referrals for ongoing breast screening. She also needs to consider ovarian cancer screening or preventative options because as a BRCA1 mutation carrier she is at high risk of ovarian cancer, a cancer that is very hard to screen for and is often not found until later stages.

I will note I would not personally want to do MRI & mammogram every 3 months (rotating) not only as I understand it that is NOT standard of care, but I would get major anxiety...it was bad enough being faced with rotating every 6 months for the rest of my life. I also would not want to do 2 mammos a year...it is low dose radiation but still. Rotating every 3 months with a MRI, CBE, mammo, CBE etc would be alright though. It is just a way to structure the annual breast screening recommendations for high risk women. 

I live  in Colorado and have a wonderful doctor.  I had a 2a diagnosis in Dec 2013 with double mastectomies in January.  I finished chemo in June.  I was also BRCA 1.  My follow up schedule is every 3 months for a year, every 4 months the next year, and every 6 months for the next 3 years.  Hope this helps.  Blessings.