Follow-up After Chemo

Mocity

Follow-up After Chemo

Mocity

Hi there,

I have a question about follow-up care for others in a similar situation......... I am triple positive.  I had extensive DCIS, bi-lateral mastectomy and then they found a small tumor which was .4cm.  My lymph nodes were clear. Because of my age (37), HER+ I am doing chemo + Herceptin.  I am wondering once that is done how does the followup work on making sure it doesn't come back.  After my surgery I was told 90% chance it was gone however 10% chance it could have gone somewhere via the bloodstream.  The Taxol+Herceptin gets this down to 5%-6% I believe.

I asked my Onc and he said I would come in for a checkup every 6 months which would include blood work.

I am curious what others in the same situation have been told.

Thanks, Cristl

nagem

I am her2+++ and had a micromet to one lymph node, but after AC/TH and a bilateral mastectomy, I saw my surgeon every six months, my radiation nurse practitioner every six months and my oncologist every three months. My radiation nurse practitioner says I no longer need to see her at all if I don't want to (I actually like seeing her, and she's the only one who measures my arms for lymphedema, so I'll continue to see her once a year), and my oncologist says I can beginning increasing the amount of time between appointments with her, so I'm stretching out to four months now. In the past, I've had blood tests with tumor markers when I saw my oncologist, but at my last visit, I was told that tumor markers were no longer being done, since they seemed to confer no survival advantage. I haven't had a PET/CT since I was first diagnosed, but because I have slightly high liver enzymes, I am occasionally sent for an MRI of my liver just to make sure there are no mets there.

bluewillow

Cristl, thanks for posting this question.  I hope lots of others answer this.  I finished all treatments (last Herc. was Nov. 10) and got my port out Dec. 8.  I thought I was free of "follow-up testing" for a while (other than mammograms), until my onc. ordered CT/bone scans after my port was out, and after I had been told all along that I would not need post-tx scans.  I have declined the scans for right now, because I just can't take the anxiety related to them.  Nagem, I was interested to read that you haven't had scans except when you were first diagnosed-- I thought that would be my situation too.  Do oncologists routinely order post-treatment follow-up CT and bone scans?  I had all that before I began tx and they were all clear.  I am having a hard time understanding why he would want them after tx... other than for more money!!

I hope to hear some others on this. thanks!

Mocity

Bluewillow,

This is an interesting topic.  I wish some others would chime in.  From what I understand these scans are ordered very routinely.  My Onc said that these scans are necessary in some cases and not in others.  In my case, I had a bilateral for DCIS and they found a very small (.4cm) of invasive cancer.. hence, chemo+herceptin (HER2+++).  He said he didn't think it was necessary to run rountine scans on me since we really don't know if there was any cancer (after the mastectomy) left.  My nodes were clear.  He said I would come in for check ups and blood work.  To me, I think I would want the scans... how else would we know if something is rearing its ugly head??  I am going to ask him again next time I see him.  He is a high ranking Onc here in Houston and head of the Baylor Breast Care center here so I do respect him very much.  He is also on the board of the San Antonio Breast Symposium which is a big deal.  So I trust what he tells me but it still scares me! 

kimbly

I have never had any scans other than the MRI/mammo and u/s when first dx.  My dr says not nec unless symptoms occur. 

07rescue

This is interesting to me - we are all aso different in how we approach things. I would be upset if no follow up scans were ordered for me, I would think the oncologist was being remiss. I am reassured by getting scans, they can often spot problems before symptoms occur, when they are more treatable. I always refuse to worry about scan results until I get them in front of me and can see they are problematic, so there is no extra stress added by getting them. I tend to worry more if there is no due diligence taken.

GramE

I cannot comment on follow up from a mastectomy, since I had a dose dense AC x 4, then Taxol and Herceptin x 12 before surgery.   The chemo did zap all the cancer.   Dec 7 and 17 I had a SNB (totally clear) lumpectomy and re excision for a bigger area of clear margins.  My surgical follow up was yesterday and  I will need a bi lat mammogram in April, even though I had a breast MRI in November and 2 left side mammo just before surgeries.  

I was told that an MRI is only 2 dimentional, in other words flat.  Where an ultrasound is more "live" and you can move and get further images and if a shadow or spot is suspected, it is immediately visible. If that makes any sense.   The place I go has digital mammo, which is the new improved method.   And Pet scans will only show if more than 1 and a half mm in size...   

the unfortunate thing is that BC is not just a " cut it out and it is gone".   Chemo, radiation, surgery, follow up scans, blood work, on and on.   But I figure since I have gotten this far, what are a few more tests and scans.   I do not have to like it, I just gotta DO it.   The bottom line is: I am alive and kicking.     Be sure to write down your questions, ask the doctors.  Be persistent and if they do not want to take the time, ask them who you should ask if not the "expert" (them)...   MY opinion.   Good luck and God Bless,   Nancy

Thai

Nancy 

My story is similar and treatment similar.  I had DD A/C to shrink tumor (it did), followed by surgery (lumpectomey) wih SNB, also all clear, followed by Taxol, then radiation, and finishing up with Herceptin.  I go every 3 weeks for the Herceptin until July.  I see my onc every 6th week, and my radiation person every 6 months.  I finished my radiation the end of October, have had a mammogram already (no active disease) and go for a MRI of both breasts in February.  No mention on additional PET scans yet.  I too figure I have gone this far and done well, what the heck to a few more tests.  Thank goodness for insurance.  Merry Xmas all and I hope we all have a better 2009!  I am so looking forward to it!  Deb

shelloz1

Hi there,

 I'm very confused as to why so many different follow up methods, can someone shed some light:  I had IDC 1.5cm 0 nodes, Her2+++ er/pr- I had a lumpectomy followed by 4 AC 6 Taxol, 32 rounds of radiation and Herceptin for 1 year.  My treatments ended February this year, since they have ended I have never seen my radiation doctor again, the only follow ups I have been asked to do by ONC was blood markers and Mammi + Ultrasound.  I don't know what SNB is??? And have NEVER had scans done before or after.  Should I be insisting on more follow up testing?

Shelley

GramE

It may have something to do with medical coverage, shelley.   My experience shows me that Muga scans are done to monitor the heart function because chemo and Herceptin can cause heart problems.  Here in the USA there is usually a heart scan (MUGA) or an echocardiogram to see if there is any change in the heart.   I also do not think a follow up with the radiation oncologist is the usual.  Once radiation is done, that is it.   SNB = Sentinel Node Biopsy to check the lymph nodes for cancer cells.   Did you have a breast MRI?   Blood work is very routine to monitor white and red blood cells.   A bone density scan (DEXA) is used to see if the bones are weakening due to chemo and highly recommended for osteoporosis screening at age 40 or pre menopause as a base line to monitor as one ages and goes thru menopause.   

May I ask your age?   I am 62 and have had no other serious health issues ever.   30 years ago I had multiple reconstructive surgeries on my wrist due a car wreck - which puts me a a higher risk for lymphadema (swelling of the arm).  I am hoping that exercises will help prevent that.   A MUGA and MRI of the breast are done with dye injections to see things better.   Some are allergic to the dye, but it is very rare.   

This does not answer your question directly, but as with any kind of treatment, some doctors are more in favor of one thing than another.  Some patients also insist on certain things.  One friend had chemo before a single mastectomy and is having more chemo after, then radiation.    Another refused any chemo or radiation after bi lateral mastectomies.  I cannot say what their "cure" rate is , as their surgeries were only this year.  Your doctor should be able to tell you why such and such a treatment was done for you.   

shelloz1

Hi,

 I just turned 50 2 days ago, and was in great health prior to this.  I have an aunt who had breast cancer, but other than that have had no history of it in the family (I guess I was the lucky one)! 

I am so worried about reoccurence I read and read and read, I guess I should probably stop before I drive myself nuts.

GramE

Shelly, I had 4 pages of questions for my first surgery appointment...  And another 4 pages for the oncologist..  This was after reading on this site, checking goggle for all sorts of definitions and Susan Love's book.   I ask questions and if I am challenged, I then ask WHO should I ask - if not you, who are the expert...    

I have to add that I go to a hospital with a cancer center and then a sub division for only breast cancer.  My oncologist is a professor and my surgeon has published some on the subject.   I feel they are up on the latest treatments and they did target MY treatment.  Chemo zapped the tumor and I had clear margins.  The first time  it was only 1 mm, so she went back in and got the "Usual" 2 mm.  

Happy Belated Birthday.  Here's hoping for another 50 for you.  Keep on top of it, get yourself checked regularly and dont'  be afraid to ask questions.