Follow Up Recommendations

marshakb

Follow Up Recommendations

marshakb

I was dx'd Dec 2006, right mastectomy that same month.  Feb I started 4 A/C chemo followed by 4 taxol, ending in May.  Then 33 Rads ending early August.  In October I had a prophy mast on the good breast.  No recon.  Now it is just over a year from dx and I am wondering about follow up.  I have no health insurance and alot of bills from 2007.  The end of this month I have follow up visits with BOTH the med onc and the rad onc.  I also see my PCP every six months.

I found this recommendation from ASCO (American Society Clinical Onocology) regarding follow up visits:

Results: The evidence supports regular history, physical examination, and mammography as the cornerstone of appropriate breast cancer follow-up. All patients should have a careful history and physical examination performed by a physician experienced in the surveillance of cancer patients and in breast examination. Examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter. For those who have undergone breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Thereafter, unless otherwise indicated, a yearly mammographic evaluation should be performed. Patients at high risk for familial breast cancer syndromes should be referred for genetic counseling. The use of CBCs, chemistry panels, bone scans, chest radiographs, liver ultrasounds, computed tomography scans, [¹⁸F]fluorodeoxyglucose-positron emission tomography scanning, magnetic resonance imaging, or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine breast cancer follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination.

Conclusion: Careful history taking, physical examination, and regular mammography are recommended for appropriate detection of breast cancer recurrence.

So...... no labs, tumor markers, scans etc are recommended.  My PCP is the hubby of my best friend and he sees me without charge.  Am I crazy to be thinking of canceling my appts this month with the oncs?  The last time I saw my med onc (Oct) he didn't  lay a finger on me.   Just talked, said all my tests were normal.  I had a base line pap, u/S and trans vaginal u/s in August since I am on tamoxifen. 

I would love some feedback.  Thanks, Marsha

miss-di

If I would have had the CA15-3 and CA 27.29 I believe my stage4 would have been caught earlier. Problems can also show up in Chem panels. Relying on mammos and yearly exams do not show up lymph invovlement in the chest.

I believe we need more attention after.

My best to all,

Diane

marshakb

Diane, thanks for responding to my post.  How was your stage 4 caught? 

The ASCO says most recurs are caught between follow up visits by symptomatic issues.  My concern is treatment for recur is not going to be any different for early detect by markers or scans than it would be if found after symptoms occur.  Plus, these people are not going to see me for free, test me for free, especially since it goes against oncology guidelines.  I don't want to constantly be waiting for test results or scan results if it is not going to change the treatment anyway.  Quality of life and all that. 

Two well-designed randomized controlled trials,^{6,8 published before the 1998 guideline, involving a total of 2,563 women, compared breast cancer follow-up with regular clinical visits with an intensive surveillance regimen involving clinical visits, bone scans, liver ultrasonography, chest x-rays, and laboratory testing. Both groups received yearly mammograms. No significant survival advantage was demonstrated in the intensive surveillance groups of either trial, with data available for up to 10 years of follow-up (hazard ratio = 1.05; 95% CI, 0.87 to 1.26).21 Health-related quality-of-life data6 also showed no difference between the standard and intensive surveillance groups. The recently updated meta-analysis of these trials by the Cochrane Database5 also found no significant survival advantage in the intensive surveillance group for overall survival (hazard ratio = 0.96; 95% CI, 0.80 to 1.15) or disease-free survival (hazard ratio = 0.84; 95% CI, 0.71 to 1.00). There was also no significant difference in 5-year mortality between the regular and intensive surveillance groups with respect to age, tumor size, or nodal status}

Just wondered what the majority of docs are doing out there.  Do they follow these guidelines?  If so, then I will rely on my PCP as ASCO says alot of patients prefer this and reduces the anxiety level.

Anonymous

Hi Dear!

I want to share my thoughts about this with you, but it would help to know:

(I know you're ILC), I can't remember...what was the stage, grade, and size of tumor? And...did you have any positive nodes? If so, how many? Did they get clean margins?

Did they do tumor markers at dx?

marshakb

THANK YOU so much Laura. 

I had a 5 cm (right on the boderline), 1 micro node of 13, very clean margins.  One onc staged me at 2b another 3a. Grade 2.   I was borderline for rads but decided to throw the kitchen sink at it and had 4 fields radiated (including super clavical).  ER/PR 97% and HER-Fish Neg.  My original surgeon refused to do the prophy mast saying I was being drastic (his exact word) but I found another surgeon to do it.  That was clean of bc as well as the sentinal node was clean.

I have had livers etc as well as tumor marker done, the last one in October.  All normal.

Having no insurance is why I did EVERYTHING there was to do the first go round.  I did have a PET done that was normal.

Thank you again honey, I can always count on you!  Marsha

Lynn12

Hi Marsha,

I hear you about too many docs.  I'm similar to you except I had bilateral DIEP in December.  I don't see my GP except if there is a problem.  So I've decided that I will see my medical onc, my PS and my GYN regularly.  I cancelled my 6 mo. appt. w/ rad onc, just don't see any reason to go there.  I had the scans done before chemo for staging and all mine were clear.  My Onc does the close monitoring as I won't have any more scans unless I have symptoms.  Btw, my Onc did give me a check up at my visit last week.

Anonymous

I think alot depends on the type of cancer you have, stage, how many positive nodes.  I have follow ups ever 3 to 4 months even now and until this past year I had full ct and bone scans every six months and tumor markers every time I see my onc.  We are going to a yearly schedule for my scans now.

Anonymous

Marsha, I do not have scans either and I'M GLAD!  Talk about anxiety!

My onc does yearly bloodwork.  I see her every six months now.  She does examine my breast and my chest (used to be a boob there).  Also lymph nodes and my abdominal organs.  My primary does bloodwork every six months because I'm on meds that my onc doesn't give out.  I see my gyn yearly.  I don't see my surgeon, nor my rad onc anymore which is FINE with me!

The reason I sort of tend to think that seeing your onc is kind of important is because they may see something in my bloodwork that my primary doesn't.  For instance...my wbc and neutrophils, (Absolute) were slightly elevated.  My primary saw no reason for further tests.  I did have a cold at the time so I'm blaming it on that.  I haven't called the onc about it and sometimes it worries me that I'm sticking my head in the sand.  I see her in March and had the BW done in Dec.  So, I sit here wondering. LOL

I can see the problem with having no insurance.  Shoot, I have insurance, but his year we have to reach a whopping $2200 deductible before they'll pay except for "well" checkups.  During my cancer treatment I had fabulous insurance.

It's a hard decision. 

Shirley

Member_of_the_Club

My original onc did tumor marker tests and it caused me all sorts of anxiety. My current onc does not do them becasue he says they are unreliable and not doing this one test on a regular basis has greatly improved my quality of life. I know others will disagree, but if it can be elevated for benign reasons and that happens often (it has happened to me) it can cause tremendous stress. I was stage IIb, and i think if you were stage III it would be different.



So my onc pretty much follows those guidelines, although I am 3 years out and still going every 6 months. I also get an annual breast mri and I think that is absolutely called for if you had a lumpectomy or still have your other breast. Also, I am on tamox and my gyno has been doing a transvaginal ultrasound every two years.

Anonymous

Hi Marsha...okay...now I remember, our dx's were very similar.

JMO...I really don't think you should go more than 6 months without having blood work done. Just because we both had dbl Masts, rad & chemo and we both only had one node positive, that doesn't mean we are free and clear of liver or bone mets or any mets for that matter. I no longer go to the rad Onc. and if you're not having any probs, it's not necessary...scratch him off your list lol! I'm still going every 3 months to the chemo Onc. I wanted to jump to 6 months next time, and he said, "let's compromise at 4". I trust him, and believe that he has good reason for me to continue with the visits.

I never had tumor markers done (sometimes I wish I had, sometimes I'm glad I didn't, but my orig surgeon didn't think it was necessary, and I knew jack sh** at the time lol, so I didn't even question it). I can see how having tm's done can be stressful, like the girls here have said, so you can probably fore-go them especially since you have no symptoms or complaints.  

The article you referenced DOES NOT mention f/u care when a node has been involved. Even though yours was micro...technically, the bc "spread", because it went beyond the breast tissue (at least this is what I've been told...if I'm wrong, PLEASE ADVISE).  

So...why don't you find out from your Onc what the most important blood tests would be, and then only get those done every six months (I would think it would consist of liver enzymes and red & white cell counts), at least for the next year or two. And then re-evaluate it at that time. If you really feel confident and are adamant, then at a minimum, have them done every year.

As for exams, my Onc physically examines my chest and checks for inflamed nodes or lumps under my arm pits. Again, I trust that he thinks this is important, so I haven't questioned it. But you may want to ask your Onc about this as well.  

I see where you're coming from with this...but then again, I happen to be a big ol' paranoid, chicken sh**! Good luck with your decision. It's always something! lol

Anonymous

My onc doesn't use tumor markers or scans at all. She does do blood work every 6 months and I'm 2 years out but she still has mammograms done every 6 months as well. I read about all these women whose dr. has them doing scans all the time and I was beginning to think my onc might be amiss. I feel better after this post.

iodine

My onc does a good physical exam and we discuss any problems or good things going on.

I'm 5 years out and so will see him for the last time next summer.

I was seeing a onc bs following a scare, different one than the first bs.  I'd get a mammo, the rad doc would say all was ok, I'd carry the films to the surgeon, and he'd barely ck my good boob and send me on my way after underlining the good part of the mammo report.

Then he charged me the second highest charge for an office visit--and I saw him for all of 3 min, tops. 

 I'm going to my pcp now.  He happens to be a gen surg who does some gen practice (old small town here, folks)  and I know where he trained and respect his ability. Dang smart guy!  I worked where he trained years ago and know what he's been taught, too.

I get my blood work from his office and forward it to my onc.  Cuts down on all the sticks and everyone has the same info.

marshakb

Thank you all so much for the feedback.

To me the physical exam is the most important and I can get that from my PCP.  Like Iodine said, the last time I saw the med onc he saw me for about 3 seconds and didn't lay a finger on me.  Three different docs for follow up seems way too much.  I've had the baseline tests, scans and markers done.  I can have my pcp forward everything to the others to put in my file.

Laura, with the bi-lat, you don't do mamms/us/mri  do you?  I did the bi-lat so I wouldn't have to be"watched carefully" hahaha

abbadoodles

My onc does not do any follow up scans or blood work after chemo.  And she is supposed to be one of the best in the business.

I just had my first follow up appt after chemo (8 mos out) and all she did was a physical exam of booby and nodes.  Also, of course, a talkie about any symptoms I might be having. 

According to locals there is no advantage to doing any bloodwork or scans uless there are symptoms that are worrisome.  Apparently, there is no long term survival advantage.

At this point, my onc is happy to see me only once a year and that is to maintain a relationship in case anything develops.  In the meantime, I will be seeing my bs for five years (once per year after the first two years) and also my primary on an annual basis.  The PCP will do routine bloodwork such as CBC, etc. 

Also, I've read in my Mentor implant booklet that I should be having MRIs every two to three years, but the PS was sceptical about that.  My BS has not mentioned anything except the annual mammos on the remaining breast.

Well, that's my story FWIW.

Tina

ravdeb

I am over 2 years out (diagnosed Sept 2005). I started out with checkups with both surgeon and onc every 4 months. I was just promoted to every 6 months by my onc and surgeon would like to see me as well, but I don't see the need for him.

I get no scans or blood work up unless there are symptoms.

I wasn't staged but one onc told me I was between stage 1 and stage 2. I had no node involvement but I'm triple neg.

I was getting mammo on affected side every 6 months but that has ended and now it's just a regular annual mammo.

Edited to add that I stopped seeing the rad onc while doing rads cuz I REALLY didn't like him!

Anonymous

Marsha - Since the bi-lat...YES...I no longer have mammos or U/S's. There's nothing left to "view".

Sorry hon, but, the pcp is not a cancer specialist...I would feel more confidant that my ONC would feel a tumor, b/4 my pcp. JMO...

Just looking out for my dear Marsha...LOL

paxton

Glad I popped in here.  I'm still in rads, but I had my one month post chemo appt with the onc dr.  She said we'd do 6 month mammos.  I was a little concerned we weren't doing any of those scans and tests, but its good to know others' situations and reports. 

marshakb

Thanks so much girls for the feed back.  I am a well read person, have researched every single thing that pertains to the type BC I was dx'd with but have found it so interesting to hear how different docs in different areas handle follow up.  I'm not comparing myself to any of your situations (well maybe YOURS Laura, LOL).  Thanks for sharing your stories/situations with me.  I actually found my post copied on another BC site with a little bit of a put down for even asking you guys the questions.  Oh well, thanks to all who replied.

Oh Tina, that was the same info I found:   "According to locals there is no advantage to doing any bloodwork or scans uless there are symptoms that are worrisome.  Apparently, there is no long term survival advantage."

twink

...'found my post copied on another BC site with a little bit of a put down for even asking you guys the questions'... You've got to be kidding.  What's that famous old adage? ... the only dumb question is one not asked?  (and the only thing dumber is somebody who puts the question-asker down).

(((Marsha))) my friend,  I can't wait for the 24th!

Member_of_the_Club

OMG, I can't believe someone would put down your question, it was a great and incredibly important question.

MargaretB

I had a bilateral followed by chemo.  My onc doesn't do any blood work, scans, nothing except an exam every four months.  I go to one of the top cancer centers in the country and my onc has told me that statistics show that I will know if something is not right. 

Laura, I had 7 doctors from the tumor board check and not one of them felt the tumor that started me on this journey.

Marsha, someone put you down for asking the question?  As you can see, our doctors all have differing opinions.  I had a bone scan last year, but only because I was experiencing some unusual aches and pains.  He has already told me I will not get one every year.

lv2cmp

marsha-I cant believe somebody put your question down on another board!  I'm so sorry that cause as was mentioned before the only stupid question is one that is not asked.  We come to these boards for support not to get put down for asking questions.  Ask away my friend and BCO has the best informed people,,dont you know that by now?  lol

I am stage IV and I do not have tumor markers.  When my cancer progressed I had consults with Sloan Kettering with is #1 and MD Anderson and discussed tumor markers in depth with them.  Both told me if tumor markers could detect cancer that everybody would be pulling them and could catch it when it first started but cancer isnt detected that easily as we all know.  Tumor markers do work for some people but not for all so therefore unreliable.

Amy

Anonymous

Marsha ... I'm appalled that someone would do such a thing and put you down for asking your very good question.  What is up with people.  That is what this site is for.  Hugs to you. 

For the record my onc doesn't do tumor markers either due to the unreliability of them. I've had all my female body parts removed and am on tamoxifen.  IDC 1.5 cm ER/PR+ Her- neg nodes dx 3/14/07.  I just had an Onc appt. and they did blood work which was fine and she doesn't need to see me for 6 months!

Bren-2007

Marsha,

The question you bring up is an important one and I've been following the discussion, as I don't know which of my docs is supposed to be managing my care now, and which one to trust.  My rad onc said he cured me. Yeah right.  Surgeon is very busy, PCP is great and I'm lucky to have found her.  I don't have a medical onc because I didn't have chemo.  So, I'm trying to do all the research myself, talk to the PCP and let her coordinate with my surgeon, who is actually the doc taking care of my bc.  I didn't have any positive nodes, but did have IDC, with extensive LCIS, so I have 3 month monitoring.  Don't know why, it's not like they can palpate LCIS and they aren't doing mammos every three months.

Also, I did see your post on another site.  But, I interpreted it a little differently than you did.  I thought the poster copied it to bring attention to this very important issue you raised. 

I've been freaking out for the past month about the very same things you mentioned above.  So, I'm grateful for all the responses you've received. 

Bren

PS - I also do not have insurance, but had to go on Medicaid (I'm self-employed), so I don't have the luxury either of deciding about second opinions or if I will get MRI's, etc.

marshakb

Amy, thanks so much for your post.  Going to a follow up and being told you have advanced to stage IV is, I believe, everyone's greatest fear.  Do you mind me asking how that was found?  I am reading more and more that ALOT of doctors follow the ASCO guidelines, especially in regards to tumor markers. 

I've just about decided to go ahead with BOTH onc visits at the end of the month, let the med onc do one more round of tests (I had tumor markers, liver enzymes, CBC done in Oct) and discuss with both of them my specific situation (no health insurance, etc) and see if we can't figure out a plan of follow up.  I don't particularly like the med onc, but I adore the rads onc.  He is the one who gives me the physical every time I see him.

BinVA, I'm sorry to hear you are in a similar situation with regards to insurance.  I couldn't get Medicaid.  As you know, the financial  just adds to the stress we are already under.  I wish I didn't have to consider it when making my decisions, but I do.  Oh and BTW  the poster called my question "too basic" and "that I shouldn't be comparing my situation with others".  I'm not comparing myself to others, I'm way too intelligent for that, I was merely asking what others follow ups are, while quoting recommendations from experts.

lv2cmp

Marsha mine started in my pelvic area where the leg connects to the pelvic bone.  I first thought I had a pulled groin due to the pain and did the 2 week rule.  I was assured that BC does not go to soft tissue (do not believe this)  Anyway, MRI confirmed mets to soft tissue and pelvic bone followed up by CT guided biopsy to confirm it was mets. 

Best of luck to you in your decision.  I don't see your question at all as comparing yourself to others, I see that you are seeking information and a knowlegable one at that.  Too Basic,,pffffttttt sure hope they aren't in the medical field with comments like that. 

Amy

cmb35

Marsha - First of all, hey there!! I haven't read the other responses yet, but I go to Dana Farber in Boston, and as I like to say, I could do my follow-ups over the phone for crying out loud! Now of course, she does a physical exam, but besides that, nada. No blood tests, no scans, nothing (unless I have symptoms, which I try very hard not to do! LOL) My med onc says they don't do blood work/scans/etc as a matter of course because they don't find the tests to be a reliable source, particularly the blood work. Don't get me wrong, if I mention something, they are quick to scan (e.g., I was having right quandrant pain on and off for 3 months and they did bloodwork to check my liver function.) I am going through the process of the BRCA testing right now, and asked my gyno if I couldn't just have the CA-125 test and vaginal ultrasound as part of my annual Pap smear appt and she said no, ins would not cover it. She said ins would only cover those test if I test positive for BRCA. (Now mind you, I have a friend who gets both of those tests and a colonoscopy starting at age 30 because of her strong family history of a variety of cancers, and her ins cover it.) Sometimes, I feel like you could line up 10 docs and ask them the same question and they would all tell you something different!!!

Anyway, I see that you've decided to keep your appt for this month, and then develop a plan going forward. (Same with me, I could take or leave my med onc, but love my rad onc, but stopped seeing her this year for the very reason you started this post - too many dr appts in which nothing actually happens!) Best of luck to you, and great to see you. (I'm sure you've been around, I haven't been posting much....)

Hang tough,

Colleen

Bren-2007

Oh Amy ... why did you say that about the hoping the person who posted wasn't a medical professional?  You know exactly who it was.  I was being sincere when I posted to Marsha.  I truly didn't read anything into the other post.  I'm so scared that my dx went from a positive outcome (until I reread my path report) to you're basically f--ked with 3 month regular checkups.  I was really hoping for some real input and I wasn't reading hard to find other hidden motives.  I'm sad, distraught and suffering from things going on in my life you don't know about.

Geez .. I'll just stay away ... okay.

love,

Bren

ADK

Hi Colleen,



I am also in the Boston area and I am appalled that you can't get the CA-125 and vaginal ultrasound paid for by your insurance. I had those tests routinely before I was dx with BC. I had issues with heavy bleeding and a history of endometriomas, but regardless, you should be able to have those tests with no question!!!



By the way, I had a CA-125 within months of my BC dx, and the numbers were low, so don't rely on that test to detect BC.



Just had to put in my 2 cents worth.

cmb35

Hi Anne,

I think we've "talked" before. I know! I didn't push it right now, because if the BRCA comes back positive, then I am auto scheduled for those tests and apparently ins would approve it. I have to say, in this particular case, I think it was the gyno that didn't know what she was talking about. She just said, "oh, I can't order those tests, ins won't cover it." This was my first visit with her, and whenever the response to the fact that I'm not taking anything for my bc is "oh, great!" (cheery voice) I chalk it up to the doc not knowing a whole hell of a lot about bc, as of course the reason I'm not taking anything is that haven't figured out what would help prevent those pesky triple neg cells from growing again. It's amazing to me how many doctors do not know the difference between hormone/her pos and neg bc!

I do realize the CA-125 is not great, but not to do the vag ultrasound seems just plain crazy to me, and that's not invasive (well, you know what I mean! LOL) I swear, if you think too much about the health ins industry you can really make yourself batty!

Hope you are well and thanks for the input, I appreciate it!