Is my doctor's approach normal?

ChesterandRally

So I had a double mastectomy 2 years ago. No chemo. My onco doctor had me take amidex. After 7 months I stopped taking it. My doctor says he does not need to see me because he is not treating me for anything since I stopped the amidex. He says I got rid of the cancer by having a double mastectomy. He says that blood tests are not necessary because they will only show cancer markers if there is cancer present. He offers no MRI's. No 6 months visits. I finally got him to agree to a 6 month chest wall exam. (I check myself but want someone else to do it every so often.) He will do bone density test because I have osteopenia. I don't know if this is what happens to others or not. Has anyone had this same experience? I hear from others (they have higher stage cancer than I do) that they have all these tests and see the doctor every 6 months. Don't know if I should have a second opinion or not. I hate to start from scratch.

Thanks for any insight you can give.

Peacetoallcuzweneedit

I had double mx + recon..I did no chemo and no hormone therapy.

I see my breast surgeon every 6mos for 5years - and because I have implants she will do annual MRI I think for two years and then every three. I am working with my PCP for a colonoscopy and already got a bone density exam. I see oncologist once a year and kind of had to pull teeth to get her to agree...but she said until I am comfortable she will do that....

mittmott

I was cut loose from my onc also because I wasn't on anything and they said they weren't treating me with anything either.. My medical dr. didn't feel comfortable with that and sent me to see another onc. We discussed it and she said, no it's not something that has to be done, but she agreed with my reg. medical dr. that there was no harm in seeing me once a year, running blood work, and physically checking me. I had cancer twice in the same breast, but both times stage 1... I see her once a year now

farmerlucy

I'm in year seven now (wow, how did that happen?).I have stopped HT. This year we agreed that I should stop yearly MRIs. I'll see her once a year until she kicks me out. I just feel good having a safety net in the event something comes up. Plus I consider her a beloved friend, and I like to catch up with her.

gb2115

I can sort of see it since she's not actually treating you for anything. They really don't do the blood work unless there's reason to. It's not standard anymore in early stage cancer.

Chest wall exam to be sure, but PCP or surgeon can do this. Even your GYN. I imagine you are still seeing your surgeon, right? If your MO really doesn't want to do it you can find someone who does.

The big thing is watching for changes or symptoms that last longer than 3 weeks. That's what my MO said (though I see one of my cancer team every 3 months for breast exam). Then they start looking to see if there are problems. There's nothing they can do to prevent metastatic spread if you aren't taking meds, so all you can do is wait to see if something pops up.

dtad

Hi everyone...agree with all of the above. I only see my breast surgeon once a year. All he does is physically examine my foobs for a local recurrence. I do not take an anti hormone so I do not see a MO. The protocol is to report any new symptom that lasts for more than 2 weeks. Unfortunately at that point it would be stage 4. IMO we can do better.

ChesterandRally

Thanks to all of you who relied to my post. It helps alot. I think I will ask my PCP about my care and get her opinion and also check with my surgeon's office. My GYN did a chest wall exam early on but she said she did not really know what she was feeling for and there is so much scar tissue that I am sure it is pretty hard to tell. I guess my biggest concern is the fact that there seems to be no way to "catch" it early. I found my cancer by doing a mammogram and that option is not available to me anymore. This probably sounds stupid but what symptoms am I looking for? I know the ones for local recurrence, red rashes that don't go away, etc., but how do I know what else to look for. I ask my onco doc and he just says "you'll know". I feel like an island on to myself, with me being fearful that everything I feel is cancer and I don't want to live in fear. I agree with the post that says "we can do better". I realize that there are people way worse off than me but you just want your doctor to care and comfort. That's the unfortunate part of cancer being so huge. It has to be massive for the docs and they are trying to take care of the people who are in worse shape. You almost get penalized because you had stage 1.

Thanks again

theresa45

While you are examining your breasts, check lymph nodes in your neck, by your collar bone, and in your armpit. If you feel a lump, see your surgeon or oncologist. Also, pay attention to any bone pain, especially in your hips or back. Anything that lasts for more than a couple of weeks should be checked. Ask for a biopsy or a PET/CT scan if something does not feel right. Doctors sometimes ignore symptoms in Stage 1 patients, assuming it's nothing. Many Stage IV patients have regretted following their doctors "wait and monitor" approach. While the odds are in your favor, Stage 1 patients definitely do recur. As for monitoring, you should see your oncologist or surgeon every 6 months for the first 5 years for a chest and lymph node physical exam. I had a bilateral mastectomy, so I didn't have yearly mammograms or MRIs. Finally, I would reconsider continuing on hormone treatment of some type at least for 5 years. I know the side effects can be extremely tough, but sometimes they subside with time and sometimes switching hormone treatment can make all the difference. Hormone treatment significantly reduces the risk of recurrence. Exercise and a low-sugar diet is also a good idea. Minimizing alcohol, red meat and non-organic dairy is also a good idea. Hopefully you will never have to deal with breast cancer again, but don't let any doctor make you feel as if you don't deserve attention because you were Stage 1. Wishing you all the best!

moth

ASCO has survivorship guidelines. It doesn't necessarily have to be your MO doing it, it could be your primary doc but I think it makes sense to follow the schedule recommended.

(scroll down to Recommendations)

http://ascopubs.org/doi/full/10.1200/JCO.2015.64.3...

Pi-Xi

My oncologist wanted to dump me (release me to the care of my PCP) after just three months. I was having some elevated liver numbers at that appointment, so he sent me for an ultrasound and kept me for an extra month. I had to beg to see him recently while dealing with a rapidly growing fibroid and endometrial thickening (the thickening showed up as benign in the biopsy). He is not that keen on ovarian suppression and seemed like he just wants me to get a hysterectomy and stay on tamoxifen. We will see how my next pelvic ultrasound goes and he will see me again in June.

The only reason my BS offered to see me past six months is that I didn't have any lymph nodes biopsied (long story).

So, no one knows what stage I am, but they have treated me as low risk! I would feel better about having at least annual visit to ask questions.

mittmott

No, I'm not seeing anyone but the new onc who took me on. They all cut me loose, surgeon, onc, everyone.. They left me to see my gyno only. I mentioned it to my regular doctor, and he said I'm not comfortable with that, and gave me the name of the onc I see once a year now. She agreed with my reg. dr. that there is no harm in her seeing me once a year to be a set of extra eyes.

wallan

This is an interesting thread. Because of my early stage one dx this time, the first time I went to the MO, the nurse told me I wasn't really a cancer patient and therefore did not qualify for support services such as free access to the gym and pool at the local university, or diet consult or beauty tips.

After that MO left, I have a new MO. But i have only met with her nurse practitioner. I do have a friend who was dx'd with stage 2 and she sees the same MO team as me. When she saw the first MO, the nurse gave her a binder of benefits and info about breast cancer and all the benefits at the cancer centre. When the new MO came in, she actually met the MO. She had lumpectomy, rads, and on Arimidex. So wtf? I guess I should be relieved that my stage 1 cancer appears so non-threatening. I did have five tiny tumors this time; two IDC and 3 ILC. And DCIS. And I am on Arimidex. Plus, I had stage 3 14 years ago. You would think they would treat the cancer with more concern. But nope. My GP even says my cancer is nothing to worry about. So, why does it bug me? I guess because I feel like a cancer patient. I mean, I have had two mastectomies! I am on hormone therapy and have wonderful effects with that. I guess I just want validation and to be seen and heard. Its cancer for crying out loud.

Thats my vent. LOL

wallan

SummerAngel

I haven't seen my BS or PS since my reconstruction was completed. I see my MO yearly now, even though I'm not on any medication. He's wonderful.

He does a breast exam and asks me about concerns. That's it unless I'm having symptoms.

Pi-Xi

I had my visit with my MO last week. No follow-up scheduled but he would be happy to see me should anything arise. I'm glad he didn't dump me this time- he says we were "just on a break." He does have a sense of humour! I feel better knowing I can call and get in to see him with any concerns.

ChesterandRally

Wow, Wallin. I totally understand your vent, especailly with the previous cancer diagnosis. The docs say don't worry about it and that is my issue. You have cancer, whether it is stage one or stage 4. Don't get me wrong. I thank my lucky stars that my cancer was caught early and I feel bad sometimes for even venting about this stuff because there are people in such a worse place than me. I chose to go off the hormone therapy so sometimes I feel like I don't deserve treatment. It seems like we low stagers kind of become unimportant and it is a fearful place to be. Again, thanks to everyone who has posted on this thread. It makes me feel like I am not the only one that this has happened to and hopefully it helps all of you to know there are others like us out there.

Meow13

You should get a different mo. I have been off treatment for 2 years and still see oncologist every year. Get one that is a BC oncologist.

corky60

I had a very small lesion that was removed by the biopsy.  No Oncotype was run.  I saw my MO every six mo. for the first three years even though I quit the anti-hormonals after a year.  She always did a breast exam and felt the neck lymph nodes.  Then she moved it to every seven months.  She never offered any blood tests or MRI.  After year 4 I stopped seeing her.  She is not strictly a breast MO, she sees patients for other cancers too.  She was very unhappy that I quit the anti-hormonals.  But she still saw me for awhile.  She always told me that I was in remission.  They can never use the word "cured" because they've seen too much.

wallan

I do see the nurse practitioner every 4 months. Maybe next time I will see the new MO.

My MO is a breast oncologist.

My GP told me I have been "medicalized" when I asked him about my MO and followups. He said just to live my life.

huh...

wallan

Polly413

This is a little off topic but as I have been told by a board certified breast surgeon: there is no such thing as a "breast oncologist". That is, an MO may restrict practice to breast cancer but there is no special training/residency or board certification for anyone calling themselves a "breast oncologist". I wish I had known this because I changed medical facilities because I thought an MO at the 2nd place was a board certified breast oncologist when that speciality really that does not exist. So having an oncologist who sees other cancers does not mean you are getting lesser treatment. I am using a general oncologist now and am getting better care. Go figure. Polly

Meow13

Since breast cancer can return it is good to have someone who specializes as a BC oncologist.

Polly413

Meow - I agree that we all need to be monitored for local recurrence and to some extent attention to the possibility of mets. Oncology guidelines say that for stage I and Stage II patients without symptoms or clinical indications that bc has spread to distant locations --i.e. mets -- that the only monitoring that is appropriate are tests like clinical exams, Mammos, MRI and sonograms and blood tests. Obviously the first 4 in this list are to find local recurrences and a BS can order these. For blood tests to monitor for liver mets, a board certified oncologist whether general or self limited to breast oncology is capable of ordering and monitoring those. The point of my post was not to put down "breast oncologists" but rather to point out that this is not a specialty like board certified breast surgery. Any particular "general oncologist" has the same training and testing and may have more experience with breast cancer than any particular self described "breast oncologist." It depends on the individual doctor. In my case I will still get mammos and clinical exams annually as ordered and performed by my BS for 5 years post surgery, yearly clinical exams by my GP, and 6 month monitoring of Femara with appropriate blood tests by my MO for 5 years. I am personally less concerned with clinical exams than others may be because neither of my breast lesions or my lymph involvement were large enough to detect by touch. So hurray for mammograms. Polly

SpecialK

There is no board certification for breast surgeons either - it doesn’t exist. Oncological breast surgeons are general surgeons that have usually done extra study, such as a fellowship. Surgeons that specialize in breast surgery are sometimes members of the American Society of Breast Surgeons, but this is not the same as a board certification.

CCM400

I have a similar treatment plan - double mastectomy, no radiation, no chemo, just Femara for 5 years. I also questioned this treatment plan even though I go to a national comprehensive cancer center and respect the expertise of my doctors. Is less more?

BrooksideVT

Polly, I pretty much agree with you about mammo vs. breast exam.  My last mamo (3D) showed a 4 millimeter (tiny, tiny) suspicious area that turned out to be a perfectly normal duct.  Neither my surgeon, nor the radiologist, nor my onc, could feel it.  The ultrasound tech could not find it at all.  Even the radiologist took a couple of minutes with the ultrasound thingy to identify it.  That said, I do value breast exams from my surgeon and my onc.  My breasts are so lumpy, and my scar tissue landscape so irregular, that I simply cannot imagine anyone who does not examine post-surgical breasts every single day would be able to identify a suspicious change.  My onc says he does not agree with me, but I think he looks kind of funny when he says it.  

I've just happily passed the five-year mark, and finished tamoxifen.  For the next five years, I'll see my surgeon's nurse practitioner rather than him once/year, and, six months later, I'll see my onc.  He will order bone density scans and be on the lookout for mets.  I assume he will continue to order blood tests, especially vitamin D, and encourage me to walk 30 minutes/day.

ChesterandRally,  it is not at all unusual for oncs to feel no need to see patients who feel no need for treatment.  You'll hopefully continue to see your surgeon for chest wall exams, and so that s/he can admire his or her excellent work.  Those of us with good pathology (you and me, for instance) do not receive all those tests unless we develop concerning symptoms.  When I was on an AI, I had enough joint pain (and anxiety!) that my onc ordered a bone scan.  Results?  All clear in the areas of concern, but arthritis in areas that did not, and still do not, hurt.  Really!