Thoughts on post-treatment monitoring...or lack thereof

hummingbirdlover

I had my BMX in October and have been on tamoxifen for 8 months.  No chemo or rads and I'm half way through reconstruction surgery (my exchange is next month).  I've had two follow-up appointments at MO's office (last one was yesterday) and they truly don't do anything.  Take my vitals, ask me some questions, poke and prod a little and off I go with "everything looks good, we'll see you in 4 months".  I've had blood work done as recent as March right before the TE surgery and I'll have it again (I assume) before the exchange surgery but do I just go along "as is"?  I guess I just thought there would be some monitoring of some kind.  I'm trying really hard not to be a hypochondriac but it's very hard.  I had the flu a month or two ago and it just settled into my lungs and left this lingering cough.  So, of course I worry about it and ask my family Dr (who put me on an antibiotic for bronchitis) and ask again at the MO yesterday and nobody is concerned, which is good, right?  I apologize for my rambling, it's just disconcerting to wrap up treatment and simply be released and sent on my way.  Anybody else have any thoughts on this?

Thank you

SugarCakes

I am concerned about this as well. I just had BMX on July 6th. I had chemo first and will be having radiation. I had a follow-up with the Breast Surgeon yesterday and asked this very question and did not like the answer. She pretty much said no more mammograms but I would be examined for a while during follow-ups with the MO. I had read and asked her about a MRI or other scan at the end of my treatment (which I will be on Herceptin until Feb 2016) to get a baseline scan and then another scan 2 years later and less frequent scans thereafter. She said No, there is no standard follow-up care that includes scans. I am not liking this. My fear is having a reoccurrence or new cancer and it not being caught prior to it spreading. She said it's a conversation for me to have with the MO.

AnniebNJ

I just had this conversation with my MO yesterday. I had an lx and finished rads last week. I am now starting arimidex and asked about scans for preventive measures, specifically a pet scan as I am most worried about mets. He said there was a study done, women who had scans every few months vs women with no scans. There was no difference in survivor rates, however the women with scans had a much, much lower quality of life. Scans pick up everything, not just cancer. These women then worried, had more scans, biopsies, etc, and I am sure we are all aware how stressful they are. It made sense and did put my mind at ease a little. I'm still worried, though.

Beatmon

My onco followed me very closely...first monthly x3, then every 3 mos. etc. Lab and exams ...no tumor markers. No scans of any type..only if you are symptomatic. So unfortunately, I got the big surprise of 50 lung mets at end of year two. No symptoms, had a ct of chest to rule out infected implant.

So I believe, for me, the one Dr.'s explanation that it lowers your quality of life, is hogwash. Sure wish I had been able to find the mets before they were so bad.

I think my dear onco now would order a ct of my little toe if I asked. He and breast surgeon both were so shocked that my little, bitty IDC turned into this monster.

So if you feel anything is wrong at all, speak up for yourself

SummerAngel

I think this is very common. I read somewhere that with the rising number of cancer patients (because of aging of the population, mostly), and fewer doctors in general, at some point actually seeing an oncologist will be a one-time thing, with any and all follow-ups being with a PA. I've seen my MO three times total, once wasn't even a "real" appointment, he just fit me in after my MRI discovered cancer in the other breast. I had my first follow-up since starting on tamoxifen last week and it was with a PA. I'm not afraid of cancer returning but I do wish my appointments were actually with the doctor himself.

BarredOwl

Hi HummingbirdLover:

I agree with Beatmon, that if you feel something is wrong, you should follow up. One thing you can do is ask by exactly when the antibiotic treatment should lead to improvement, and to take further action at that date if you don't feel better.

I posted elsewhere about what you aptly describe as "post-treatment monitoring . . . or lack thereof" and reproduce it below:

After the flurry of activity, when you hear the recommended follow-up, it's like: "Really? That's it?" This caused me to look it up. In case you are wondering, here is what ASCO (American Soc. of Clinical Oncologists) recommends from its patient pages:

http://www.cancer.net/research-and-advocacy/asco-c...

The article at this link (see full text tab) compares various follow-up recommendations in Table 1 (click on it to view). Note the additional recommended gynecological assessment if on tamoxifen:

http://dx.doi.org/10.1016/j.critrevonc.2014.03.001

The ASCO page has some good sample questions about monitoring. The ASCO page also mentions and includes a link about "late effects". In general, before being passed off to a primary care physician, one might want to ask the MO and RO about the possible late effects of any specific drug(s) and radiation (if any) received, and whether certain monitoring may be advisable in view of your history. Discuss what you have been advised with your primary care physician, and seek their input/assistance in view of your particular history or presentation (any symptoms).

BarredOwl

AnniebNJ

Thank you BarredOwl for posting the link to the article. It was very informative. When I expressed my anxiety about recurrence symptoms to my MO, he suggested the 'two week' rule. If something is bothering me and I am worried, give it two weeks if possible. If the problem remains I am to come into the office to have it checked. I can work with that.

Beatmon, I am so sorry to hear about your recurrence. I think scans should be decided by the patient. With an oncotype of 19 it was left to me to decide on chemo, but I can't decide on a pet scan? It's ridiculous.

cathiero

I think "lack thereof" aptly describes post treatment care. I felt that my onc appointments were basically an expensive set of vitals. I finished chemo Jan of 2014. When I saw my onc in November of that year (at a six month follow-up) she told me I looked good, asked if I had any questions then had me get onto the exam table. She actually told me to "lie back and push my shirt and bra up out of the way" so she could do a breast exam. Well, I know how a breast exam is supposed to be done and that was definitely NOT it. Soo, I decided to switch oncs. Asked my GP for a referral, went to see a highly regarded onc for my next follow-up visit. She was very nice, seemed very pro active. I liked her. When I saw her six months later for my routine follow-up she told me at the end of the visit that she would see me in a year. I wonder if she knows that ASCO guidelines for follow-up care after completing treatment is every 3-6 months for the fist three years??? SO, I think I am probably my own best care taker. I figure if I have any problems I will see the onc. Other than that I guess it's up to me to watch over myself. I will probably do a better job of it than any of the drs will. I am currently NED and pray for continued good health.

Spookiesmom

It does seem to be a letdown after all the hustle of doc appts. During treatment. My RO dismissed me with, come back and see me if you need me. My BS originally said he would follow me for 5 years. I was discharged because they are so busy.

I still have my port, 3 years this month. Don't want it out. I go for flushes, and see MO every 4 months, have labs done through my port. Tumor markers too. She hasn't said, I haven't asked how long she plans to follow me.

I've heard the two week "rule" too. My lower back went wonky, I waited, my brain thinking dark thoughts. My PCP didn't hesitate to get me a MRI. My spine isn't fine, but it's not cancer, so I can deal.

It does get better as time passes, really!!!

SallyS70

I have a question that may have been answered in back pages ... if so, I am sorry to be asking it again and will read further back than I have done so far.

I left my MO's office yesterday with a mammogram order for October which fits the time guideline mentioned in an article referenced above. However, the order is for a screening mammo. Did my MO make a mistake? Shouldn't he have requested a diagnostic mammo? I will be 2 years out since my diagnosis.

Does anyone know of data or an article that shows when to use screening mammos and when to use diagnostic mammos?

BarredOwl

Annie and Spookies:

My surgeon also suggested the two-week rule, as a rule of thumb for non-urgent symptoms.

Cathiero:

I also noticed my follow-up schedule was not in accordance with ASCO guidelines, so I staggered the appointments with my primary care physician and the breast surgeon every six months.

Spookies:

I think the specialistsare extremely busy, and the nature of the routine assessments does not seem to require a specialist. The surgeon scheduled my next annual visit with her nurse practitioner. I have scheduled my gynecological appointment around the same time, and my primary care appointment six months from that. If something worrisome came up, I'd contact the specialist.

BarredOwl

CatsRus

I just saw my MO today. Last chemo tomorrow morning. I start Femara in 2 weeks. MO will see me again in 6 months. And I said 'that's it?' Guess it's not just me! It feels good and wrong all at the same time.

I am in Canada

ElaineTherese

I finished rads in April but still see MO fairly often. That is because I'm still getting Herceptin every three weeks and Zoladex once a month. MO is still ordering scans; I call her Dr. Scan. In May, I had a heart scan; in June, I had a dexascan (baseline because I'm taking an AI). In August, I will get three scans: 1) another heart scan; 2) a mammogram; and 3) a PET scan. I don't really mind all the scans so long as I have childcare lined up.

Of course, some ladies have BMX so they can avoid follow-up mammos; I understand that, but I'm not afraid of scans anymore. If the PET scan reveals mets, so be it. I'd rather know than not know. So, I'm OK with Dr. Scan.

Spookiesmom

Oh, I don't worry so much any more. If I feel something is wonky, I can call my PCP or MO. I think what these ladies mean is the initial let down is a shock.

hummingbirdlover

Thanks for the replies! I was coasting along just fine until I developed this cough, which sent me to the dark side but I hope it will get easier not to dwell as time goes by and yes, to be done with treatment is both exciting and terrifying at the same time.

SugarCakes

Beatmon, that is horrible and it's exactly what I am afraid of. I hope you are coming along well. I looked at your signature. Did you not have chemo or radiation with your first diagnosis, even with the Her2+ status?

SugarCakes

I hate when they say "same survival rates" when comparing anything. Survival doesn't mean they haven't suffered (even horribly) with a reoccurrence or new cancer. If it's going to come back, it's going to come back, but catch it early @!%#!

slv58

I wish there was more follow up care- I'm in Ontario Canada and found both my lumps myself. I had a check up (6 month) with my MO in November and was checked by her fellow and her. Clear check up. I found my recurrence in Jan. We get no routine scans unless we present with a symptom. 

Hummingbirdlover has brought up an interesting point. When is a cough not a cough? I know my type of BC usually metastasizes to the lungs, so if I develop a cough do I visit my PCP ( who I don't have confidence in) or my MO? Or do I wait and see if it lasts more than 2 weeks?

I hate the uncertainties and lack of follow up. I understand that a lot of these scans give us unwanted radiation. I've always wondered why routine ultrasounds aren't done instead of mammograms as they are always the second step if something questionable shows up on a mammogram. They seem more accurate as a diagnostic tool in picking up problems and cause no radiation risk. Must be a money and time thing. How sad. 

tanne

I also feel that I am 'on my own' now that my therapy is complete. And there is also a feeling of just waiting for the other shoe to drop. Although my docs have said i have a 10-yr survival rate of 90%, which i suppose i should be glad about, it really isnt that comforting especially knowing that recurrance is not uncommon. And as someone has pointed out, survival rate does not eliminate the possiblity of mets, further surgery, further treatments...

CatsRus

Tanne, I just finished chemo last week and feel exactly the same way.

msphil

hello i also felt deserted when done my treatments, also felt like everything i felt after was cancer back lasted good while then i started thinking positive, saying to myself "i am healed in Jesus Name," and kept HOPE in my mind and heart, i am now a 21 yr Survivor) Praise GOD,msphil(idc, stage 2, 3 nodes involved, L mast, chemo and rads and 5 yrs on tamoxifen) and was making wedding plans to my wonderful husband, we have been married for 21 yrs, To God be the Glory.

hummingbirdlover

Thank you, msphil. Congratulations on 21 years NED

BarredOwl

Hi:

The American Cancer Society and American Society of Clinical Oncologists have just published a new Breast Cancer Survivorship Care Guideline. It is quite comprehensive regarding many of the issues we may face.

"The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer."

Full text: http://jco.ascopubs.org/content/early/2015/12/07/J...

There is a link to pdf at upper right.

BarredOwl

farmerlucy

That is extremely helpful barred owl. Thank you!

Does anyone know if your lifetime risk,mine was 50%, puts you in a higher category for recurrence? Or does it reset or something once you've actually had cancer?