Doctors nonchalant after treatment care ...

Lisa810

I apologize in advance for this being so long-winded, but I need to vent. I'm so glad I found this place, didn't even know it existed til today!

I was diagnosed in 11/08, stage 2B, ER+, in ductu left breast – because of my Mom’s breast + colon cancer and my large, dense breasts, I underwent a bilateral mastectomy with reconstruction on 12/30/09. I had 2 nodes involved – cancer was also outside of the nodes, so they removed 15. I was told that they “got it all”. I underwent chemo 2/09-5/09 as a precaution, and also had radiation treatment 11/09-12/09. I tested negative for both BRCA’s.

I’ve had three reconstruction surgeries, ending with a DIEP flap 11/10 + 2/11. I am very happy with my new and improved body, my labs come back normal routinely, but psychologically, my fear of recurrence seems to be getting worse.

I feel I had excellent medical care, all through Westchester Medical Group, now known as WestMed. I was very lucky to have intelligent, informed, compassionate doctors who listened, but were also honest and direct - but I am increasingly troubled by their seemingly laid-back aftercare recommendations for me: basically, no scans are needed, just CBC bloodwork – no tumor markers - and physical examinations every 6 months. But I am very concerned about this "wait and see" attitude, especially since I know my body knows how to make cancer. I am also 30 lbs overweight, which puts me at risk for recurrence, and I’m trying to remedy this, but I sort of suck at dieting and exercising. My primary care physician, while thorough with meds and tests, just keeps advising that I should “diet and exercise” more - she’s weak on giving specific help.

Three oncologists and two breast surgeons so far have told me that, statistically, the survival rate of women whose breast cancer (and breast tissue) was 99% surgically removed, and who get regular scans, tumor markers, etc, isn't any better than women who get scanned when symptoms finally crop up ... I DO get this. One well-known, well-respected breast surgeon told me: "If I thought a sonogram would be an effective diagnostic tool for you, I'd do it in a heartbeat." Which made sense, at the time, when she was explaining it to me. Then I go home and obsess and realize, no, this isn’t how I want my aftercare to be. I really think I need to KNOW what’s going on in my body. I realize that there will be stress due to false positives, I know the chances of false negatives are high … but the NOT KNOWING is just as stressful for me. The beginnings of my breast cancer were probably missed by the radiologist who read my mammogram a year (to the day) prior to diagnosis, and my CBC was normal one month before I was diagnosed. I know full well that tests are not perfect. Then again, if I had been having yearly sonograms, perhaps my outcome would’ve been a lot different. Hindsight is fifty-fifty, and I do not blame anyone. I’ve never thought “why me”? Not once. I went through this fiasco with grace, dignity and (probably too much) twisted humor. Why am I now becoming a basket-case? And why aren’t my doctors taking into consideration my mental health?

It doesn't help that all 4 oncologists in my group somehow "missed" that I’ve been on sertraline while on tamoxifen these past three years, and zoloft is not the antidepressant of choice for tamoxifen patients. I know my records are lengthy, I know doctors are only human and make mistakes, but my meds are on the top of my chart, you’d think that that would’ve jumped out at someone at some point early on. Thankfully, I was weaning off properly and can now go cold turkey, but this also doesn't help my anxiety level.

So, my choices are: 1) seeing the 3rd oncologist in my group, the one who I only saw once (due to his ice-cold bedside manner) but who is very experienced + well-respected; 2) shopping for a new oncologist, and perhaps a new breast surgeon (and how easy is that going to be, when I’m no longer an emergency patient?) and probably a new primary care physician; 3) stop looking for trouble, be thankful my labs just came back normal, do more yoga and seek counseling.

Double Whammy

Door #3
Are you sure I didn't write this? All I'd have to do is change a few minor details and you could be me. Except I think I've gotten past the horrible anxiety and finally reached a place of peace with all of this (at least for today). I think what helped me most in addition to this group was finally reading (the whole thing) The Breast book by Dr. Susan Love. She does such a good job of explaining everything in a language we can understand and it really put me at ease about not having extensive scans and tumor markers. I don't know how I'd be if I was symptomatic - probably back to being a basket case. I had some abnormal labs my last visit and I did worry for a while but I even got past that before my oncology appointment. And I'm often looking something up in that book. When I do, I feel better.

So I vote for Door #3 for you. I doubt another oncologist would do anything different regarding followup. About the med thing, who the heck knows what happened or who missed what? They may have been well aware of it but felt the benefits were more important than potential risks. They each have their specific jobs to do and I've found they don't really go beyond that, tho. While you're asymptomatic and tests are normal, their job is to make sure you're still taking your tamoxifen, pat you on the back and see you at your next visit. I was told during my treatment things like "we don't do that here" and "that's Dr. so and so's job", and "we do pass you off like a baton".

In addition to the breast cancer thing, I had endometrial cancer and see a gynecologic oncologist every 6 months. I like knowing I can talk about any breast concerns there, too. And I love my pcp. She takes my whining seriously. But wait! I'm not whining any more. I hope you get to this place, too. Counseling could be a good thing. I've been thinking about it, too, while I'm in a good frame of mind.

Suzanne

mbart

I vote for door # 3
You are so right to stay on top of your medical care. And you are doing that. And it appears to me, so are your Doctors. In My Humble Opinion - after such a long time as the Cancer Patient - you may need to let yourself relax and be the Cancer Survivor. You are right - you must be watchful, and make all your Dr. appts. But now go out and do what you are so lucky to be able to so - LIVE !! Let your life center around something besides cancer treatment. Take a trip to see family, old friends, or new sites. You are alive !!! Revel in it. Breathe it in. All those treatments you had to endure WORKED !! Thank the Lord. I remember an old movie (Maybe it was "Cannonball run" or some other silly film) and in it the driver snaps off the rear view mirror of the car and says "What is behind us is of no concern!" I think of that. I too am so very lucky to be a survivor. I call myself blessed - and I am. I pray you can get to that spot too. Prayer and meditation helps some of us, walking is also great at putting things in perspective (and helps with the weight), and medication is helpful for others. Chose your poisin girl and get going - you've got a life to live !!!

Gabe N Abby Mom

As someone who is stage IV,
As someone who is stage IV, I vote for door number 3 too! Revel and bask in your current remission/NED status. Try and focus on the fun things in life...say yes more often to lunches with friends, day trips with family, your favorite hobby, time snuggling with loved ones.

And absolutely yes to the counseling...the first place to ask is your cancer center. If not one on one counseling, maybe there is a group in your area that might be right for you. You might want to also consider an anti-depressant. Mine keeps me on an even keel, I am much closer to the pre-cancer me with it. Without it, I was in pretty bad shape.

Hugs,

Linda

lynn1950

Wow, Double Whammy and Lisa,
Wow, Double Whammy and Lisa, we really are kindreds. For some of us, the state you, Lisa, are in must be one of the classic stages of cancer survival. It would be good if caregivers could recognize this and have a protocol for treating it. I think for those of us whose cancer was initially missed and thereby was allowed to grow into a more worrisome stage, it is hard to get over the anxiety of something still being missed. Without tests, we sometimes feel we are in a potential free fall. As I was going through treatment, I was a fighter. Surgery, chemo, and rads were over for me in October of '09. Then it was Arimidex and "see you in 3 months." Like you, I wanted TESTS. Without them, I was worried that again something could be growing and would be missed. I fell apart; my anxiety was off the charts.

Counseling, meds, and yoga have really helped me. I like your door # 3. Counseling with the right counselor made all the difference for me. xoxoxoxo Lynn

New Flower

lynn1950 said:

Wow, Double Whammy and Lisa,
Wow, Double Whammy and Lisa, we really are kindreds. For some of us, the state you, Lisa, are in must be one of the classic stages of cancer survival. It would be good if caregivers could recognize this and have a protocol for treating it. I think for those of us whose cancer was initially missed and thereby was allowed to grow into a more worrisome stage, it is hard to get over the anxiety of something still being missed. Without tests, we sometimes feel we are in a potential free fall. As I was going through treatment, I was a fighter. Surgery, chemo, and rads were over for me in October of '09. Then it was Arimidex and "see you in 3 months." Like you, I wanted TESTS. Without them, I was worried that again something could be growing and would be missed. I fell apart; my anxiety was off the charts.

Counseling, meds, and yoga have really helped me. I like your door # 3. Counseling with the right counselor made all the difference for me. xoxoxoxo Lynn

Standards of care
Your doctors follow the standards of care as far as scans. Due to DIEP reconstraction you red breast MRI semi or annually depending on your insure ce. I hope a new doc will used MRI to check your breasts

missrenee

New Flower said:

Standards of care
Your doctors follow the standards of care as far as scans. Due to DIEP reconstraction you red breast MRI semi or annually depending on your insure ce. I hope a new doc will used MRI to check your breasts

As another Stage IV girl,
I also agree on Door #3. However, even in saying that, I still had to convince my breast surgeon that I wanted a breast MRI in conjunction with my mammos. I have very dense breast tissue and my disease was caught very late because it was not detected on mammo. So, in January I had a mammo (which was okay) and just this past July I had a breast MRI--which showed "something" that I had to have biopsied just 2 days ago. Results are not yet in--but I'm hoping it's something benign that showed up. MRIs are not typically protocol--they are expensive, a lot of insurances won't cover them routinely and they do have a pretty high proportion of false positives.

Another point--I never had a PET scan after my surgery, chemo or rads. Many patients doe not--it is not typically protocol. Both the surgeon and onc. strongly were against it--even said that they would not do one if I were their sister. About 18 months into Arimidex therapy, I had some back pain. Onc. ordered a PET scan--and there is was--bone mets to T-12, sprinkled throughout the spine/pelvis. I still agree with their decision, however, because bone mets are bone mets and once you have them, the treatment is the same (whatever that may be).

The most important thing in all this--you have to have peace of mind. Whatever makes you feel the calmest, safest and most peaceful is what you should do. Unfortunately for all of us, the answer is usually not all that clear. There are no guarantees.

Take good care and I hope you come to a good decision for you.

Hugs, Renee

MsGebby

Hi Lisa
I can absolutely feel your pain. I am dancing with NED for the moment and couldn't be happier. I "had" Stage II breast cancer and decided against chemo. I am glad I did. The Oncotype DX test came back and said there were no benefits with a regime of chemo. SO off I went for radiation. Finished that this year in March and now taking Arimidex. So ...

I decided to add my 2 cents here because I understand all about doctors that are seemingly non chalant. Just recently, I replaced my oncologist and added an endocrinologist and pulmonary specialist. I also opted to visit Memorial Sloan Kettering in NYC. There, I met with a thoracic surgeon. WHY did I decide to do this? I got ANGRY. I felt like you do at the moment. The last straw for me was in May when my oncologist sent me to the ER because of breathing difficulties. (I have multiple lung nodules and new lung masses) The ER doctor wanted to keep me for further tests because of the info he got from a CT scan of my chest. My oncologist nixed it. THAT's when I said to myself "ENOUGH"!

My new oncologist and thoracic surgeon have made me feel so much more comfortable with my treatment options. They get that I need answers and they are on the same page as me. Imagine that!!!

Anyway, now that I have surrounded myself with doctors and professionals that I KNOW are working as a team with me, I can see the light at the end of tunnel. Even though I am not out of the woods YET, I am not obsessed with what can be wrong with me. I stay positive and just keep moving forward.

If you feel you need to find a new doctor, by all means go for it. But like the others, I think keeping the door to that dark place in your mind closed (for now) is a good idea. We only have one shot at life. Grab is with both hands and embrace it with all your heart.

LIVE! It's a great feeling ...

Hugs,
Mary