I am 49 yrs. old, was diagnosed 3/2001 with DCIS, rt breast, ER positive, stage 0. Had a lumpectomyand radiation treatment and was put on tamoxifen. Only took tamoxifen for 5 months as I had terrible hot flashes. I was then diagnosed with LCIS, left breast, 4/04, stage 0. As I had many calcifications, I decided to go with a bilateral mastectomy so that all could be removed. My question is what follow-up care should I have. My surgeon said I didn't need to return for 1 year and did not recommend a CAT scan or anything else to look at the chest wall. I am very uncomfortable with this and am wondering what standard practice is in my case.
Thanks for any help you can give.
Sue in VA
Hi Sue, welcome to the board. You question is really beyond my scope of knowledge, but I'll harzard a guess as to why the doctors are not recommending a CAT scan at this time. Your cancers were found at the very earliest stage. You did not mention the status of lymph nodes, but I am assuming they were neg. Since the cancer was found at Stage 0 the doctor probably does not think there is any reason to do further testing at this point as it is unlikely the cancer has spread. This is just my guess. I was diagnosed at Stage 1 and have not had CAT or MRI scans. My onc. said blood work and physical exam just do not warrant these tests. Hope this help. I am sure Dr. Leo or Dr. Lu will offer their advice, too, as well as other board members. Take care, Lauri
Lumpectomy, 6 mm tumor
Tamoxifen, 5 yrs.
I too was diagnosed T1a and did not receive chemo or radiation after a bilateral mastectomy. I had my 6M follow-up visit with my oncologist last week and had the same concerns you are having. Since there is nothing left to do a mammogram on, how do you follow things? She assured me that she would follow me with blood work and a chest x-ray every one to two years. Since you were at stage 0 your visits may be less frequent. My oncologist told me to contact her if I had "unusual" bone pain (not joint pain) or other pain I had a concern about.
BC is a terrible disease, one that can raise havoc with your emotions as well as your body. Take care and know this is one of the best places for up to date information and support.
Dx - 7/04
Bilateral Mastectomy (skin sparing) 8/19/04
Micro-invasive DCIS, DCIS, LCIS
No chemo, no radiation
Waiting for reconstruction
Unfortunately, follow-up seems to vary quite a bit.
I was dx in August 2003 -- invasive ductal -- did chemo, rads, lumpectomy and re-excision. I am now on Tamoxifen. I've had hardly any follow-up at all. The last time the oncologist did any bloodwork was 3 weeks after chemo was completed (15 months ago). I never had a CT scan or MRI. I did have a bone scan when I was first diagnosed.
So.....since I finished chemo and rads, I have ONLY had breast exams. Nothing else.
I really wanted some bloodwork done at my January appointment with the rads onc and they said there is no need. So.....I have an appointment with a new out-of-town doctor in early May. If you really want a test/scan for your own peace of mind, I think this is VERY reasonable. Request it and if they will not comply, look for a new doctor. Sadly, I just don't understand why they can't comply with a simple test if it will make us feel better. If they had to walk this path, maybe they would understand.
As far as follow up...I would tend to push for something. But I had a friend who died last week from Stage 4 BC....thing is, it started out as DCIS stage 1 in 96. By the time they discovered it had some back, it was in her bones and elsewhere. She did what the docs told her then went on with her life. She originally had no chemo and no rads. And follow up was just a quick visit once every year or so...no tests, etc. SO....because of her, I would push for something. But that's just my 2 cents....Not trying to be negative...just think you should do what you can to stop this stupid disease.
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4
Me too!? I was diagnosed a year ago after a prophylactic mastectomy. I went with one (similar to you) after 2 excisional, 3 core and 1 fine needle biopsy. This over a period of 15 months. They found LCIS on 3 occasions and aytipical hyperplaia each time. I, like you, said the heck with this and said mastectomy please! The pathology at that point came back with a highgrade DCIS with calcifications, necrosis and it was 2.9 cm. I was really surprised that this could be hiding. I am not a big person, about 5'7 & 127 lbs & was a size 34B. Also ,I am not in any small backwater town. I live in a major metropolitan area with access to great medical care. My surgeon, like yours, advised me to visit him annually and reccomened no other follow-up. YES, that makes me nervous.
Advise is as follows: I would assume that you had to have been under an oncologists care to receive the tamoxifin. He should be part of your follow-up care. He is a great person to do blood work that can signal a reoccurance. Also, try schedule your regular ob/gyn appointments between your surgical & oncologist visits. This will increase the times you are seen by a medical professional. Find out and be very clear on what reocurrance feels like, that way you know what to look for. Consider enrolling in a cancer research study; this would be more opportunty for follow-up.
Remeber, DCIS is not considered to be invasive. Overall the medical community beleives that it does not have the capability of spreading. However, they will never say never. You will hear that the risks are very low. There are still so many unknowns about cancer and how it spreads, there are at this point no guarantees.
Since I did not have any lynph nodes removed or biopsied, I am planning on being vigilant. There is such thing as micrometastasis. Not usually found with DCIS, but I have been told it can happen.
Sorry about the long message and probable misspellings; but being in the same boat, I sure feel for you!!
Here is some information about DCIS and LCIS that may help. First of all, DCIS is precancerous, and the cure rate after mastectomy is very high (96-100% depends on which paper you read). After mastectomy for DCIS, no chemotherapy or radiation is needed, although some patient may receive hormonal treatment. Recurrence on chest wall is rare after mastectomy, although no physician will say 0% for relapse.
LCIS is not cancer, but a risk for cancer. If left untreated, the patient will have high risk for invasive lobular carcinoma or ductal carcinoma (not DCIS), and thus prophylactic surgery is indicated for some patients. After mastectomy, there is no risk for having a new cancer in the breast because of the LCIS since the breast tissue is removed.
I am not sure how soon you should see your physician but he/she may think a physical examination is more important than CT of the chest in follow-up. You can ask for an early appointment simply because you have concern about the recurrence.
Thanks to everyone for their input. I so appreciate the posts as I now feel I have some direction. Actually, since my surgery was not done in our local hospital, I decided to have my surgeon follow me. (UVA) She wrote the tamoxifen prescriptions and had me do digital mammograms every 6 mos. I would then see her the same day for a report on my mammo. followed with a manual exam of my breasts. After my initial DCIS diagnosis, I did see the local oncologist for recommendations regarding treatments. I also had radiation done locally as well.
Having said that, I will now make an app't with the local oncologist and have him follow me. I would like to have bloodwork done yearly and further investigate having a CT scan, MRI, or whatever yearly as well, possibly for five or more years. Interestingly enough, because I have a family history of heart disease, my family Dr. sent me for a CT scan of my heart and also included having the axillary nodes looked at as well as chest wall since I voiced the above concerns to him. He said we would just take a look at both heart/arteries and chest wall. Will let you know what happens with that and what can be seen as this might be something some of you might want to persue.
Thanks again for relieving some of my stress. Will post again soon and, of course, will continue to read the posts! May good health follow all of you. What a great site.
I finally thought it was over, but was completely shocked when I went for my 3 month check up and my recent mammogram showed more calcifications. I am now booked for another core biopsy only one year after having core biopsy and then surgery to remove the area.I am also on tamoxifin as they found LCIS last year.I never thought I would be considering a mastectomy but see on this board that it might be a possibility. If anyone has thoughts on this please advise.......I keep thinking how many biopsies can we put ourselves through?
As my calcs were scattered within the breast, there was no way to biopsy every one of them. My surgeon said they looked like the biopsied group that were malignant. (I had a core-needle biopsy-LCIS.) My surgeon said she could watch me closely and I could wait or go the mastectomy route. After thinking through the situation, I was uncomfortable with the "watch and wait" approach. I was and am unwilling to take any chances so there I went. I really felt I had no choice. It was a very difficult decision and I cried off and on for awhile but I am glad I had the mastectomy.
I needed to know I had done everything possible to keep the cancer from returning. I also looked at reconstruction and consulted with a plastic surgeon. I did choose not to go that route though and I am glad about that, too. If you need anything, please holler. My surgery was this past July and I did great and am doing wonderfully. Bounced back very quick. Let me know if I can help. In the end, you have to do what is best for you.
I am not quite in the same situation as you Sue - I had 2cm invasive ductal tumour with associated intermediate grade DCIS - lumpectomy & sample node removal, 2 nodes cancerous and then went back for total axillary removal, one more node cancerous. but I do understand how you feel about a lack of survey. I had chemo and radiotherapy and now on Arimidex.. But I live in England with socialised medicine and we cannot dictate whom or when we are seen. I was dx 2 years ago , but about a year ago I noticed a thickening, like a long rope, in the upper part of my breast - tumour was below the nipple and was very concerned. Got to see a different breast surgeon on an emergency basis through my GP (PCP) within 4 days but he said it is due to radiotherapy. I don't believe it. I was discharged by the Oncologist a month after I finished radiotherapy - and have now been advised my annual visit with the breast surgeon has been cancelled and I will hear from them soon. Well, if I don't it will be the Chief Executive of the hospital I go to, or the national newspapers. I am fuming about the lack of follow up. Also got Crohn's and the same hospital is telling me they are putting back 3 monthly patients with my gastroenterologist as they are overloaded. Think we are going to have to cash in some savings so I can go privately.
I would ask for a bone scan and CT scan - I had these after surgeries and before chemo/radiotherapy - but in two years have not had anything done, even though I have severe hip pain - my GP has now sent me for physio when I think I need a bone scan! AArrgh!! Here, it is all about resources unless you make a fuss and when you don't feel well, who wants to make a fuss?
Hope you get sorted out soon.