follow-up screening after bilateral mastectomy/desperately need answers

ohilly

I had a mastectomy in January for invasive intraductal cancer (1.1 cm, did not spread to the nodes, and have found out I am BRCA 1). Because of the BRCA, I am also going to have a preventive mastectomy on the other side in Sept., after I finish my chemo that I am currently going thru. I already had a complete hysterectomy in the past. Anyway, my question is as follows: I have questioned my breast surgeon and oncologist as to what kind of follow-up I will have after the bilateral mastectomy. Both say they will just see me every 3 months and 'palpate' me, that it is not recommended to have MRIs after bilateral mastectomy or any other type of screening tests. I feel out of control when they tell me this, like there is nothing I can do: my mother is currently dying of lung cancer (completely unexpectedly) that has metastized to her brain and I can't bear to see myself lying there with brain mets from my bc in the future. I try to block out the thoughts, but I can't, and I want to do everything in my power to prevent this if I can. My sister (who is a pediatrician) has offered to order me an MRI in the future if no other doctor will agree to do this. I am also terrified of getting lung cancer: I never smoked, but my mother was a heavy smoker so I probably grew up around a lot of secondhand smoke. I asked my oncologist about getting a chest X-ray to screen for lung cancer, and he said this is also not recommended by the American Oncology Society. Can anyone help and give some advice? In fairness to the oncologist, he did say that I was doing a lot by having had (or will have by Sept.) a bilateral mastectomy and having my ovaries removed, and I suppose I could always insist on seeing him more often to palpate me. I located the world's specialist in BRCA at the University of Chicago and have an appt. to see her on June 9, so I will ask her all this, too. Thank you. Any advice will be appreciated. Ohilly

Cindy54

ohilly, I am sorry to hear about your Mom.I am amazed that you are so much in control of all your health issues despite worrying about your Mom. I know that is not easy. I think you are doing the right things for you by staying on the doctors, asking questions and following up elsewhere when you don't get the answers that you need.I think by talking with that specialist in Chicago, a lot of your questions will be answered. I think you are very fortunate to be able to do this. Being proactive instead of reactive is always the best.

My Dad died of lung cancer. I was always around second hand smoke. My Mom died of ovarian. Three close female relatives had breast/gyno cancers. So I have been surrounded by it all my life. I try not to think about this all and just deal with things as they come up. I was not a preventative type person until my health issues started to surface because I was always the family caregiver. And they are the last people to take care of themselves.

I don't think there is anything wrong with trying to be as preventative as you can when it comes to your health. But physicians have a set of guidelines and insurance rules they need to follow also. So please keep this in mind. I think you can almost have anything done if you can afford to pay for it out of pocket, but then again, another physician has to reccommend it. I hope you find what you need to set your mind at ease.

I wish you well, ohilly. Please keep us posted. Hugs, Cindy

Unknown

Ohilly, So sorry about your Mom, this is very hard for you I am sure. My Aunt had brain mets with her breast cancer before she died and I can understand your fear. For me also mets is a huge fear. I try not to think about it but it really scares me. I understand your concern about second-hand smoke. Both my parents smoked all through my childhood and teen years. We lived in a small ranch home and I am sure that I inhaled many "packs" a day. I too worry about the potential effects of that. When I first read about the cat scans for possibly early detection for lung cancer I asked my surgeon about it. He said that the insurance companies won't pay for it and its not protocol for second-hand inhalation anyway and only done infrequently for smokers. I guess we have to try and put the fear out of our minds. I know I should not be adding new things to worry about.....As for your Brca status, you are being very proactive and doing everything possible to gain some peace of mind with the situation. I think as long as you are being examined on a very regular basis that is good. I know what you mean though about wanting scans. I am 2 years out from my diagnosis and the breast clinic that found my cancer is insisting on a follow-up MRI "just to be sure". I hate needles, but am going along with it because the MRI that I had right before my lumpectomy showed something that had not showed up on my initial diagnostic mammogram. It turned out to be benign, but that tells me that a mammogram doesn't always show every little thing. If there is something going on, I want to know. They tell me that after the 2 yr. scan they just do exams as follow-up because the chance of recurrance decreases a lot each year. What do I know? Well, hang in there and keep us posted. Again, I am truly sorry about your Mom. Take care, Eileen

ladybluepgh

hi...I had a bilateral mast this past year and like you I asked my oncologist about follow-up testing..He said that cat scans or mri scans are no longer considered necessary..but they will do blood tests for tumor markers every 6 months besides the physical exam...I too am concerned about this and am thinking about asking my family doc to order a cat scan anyway...just for my own peace of mind...I had a recurrence after 9 years..so there is nothing they can say to me to make me think I'm safe...I need proof...lol...take care of you.

cabbott

ladybluepgh said:

hi...I had a bilateral mast this past year and like you I asked my oncologist about follow-up testing..He said that cat scans or mri scans are no longer considered necessary..but they will do blood tests for tumor markers every 6 months besides the physical exam...I too am concerned about this and am thinking about asking my family doc to order a cat scan anyway...just for my own peace of mind...I had a recurrence after 9 years..so there is nothing they can say to me to make me think I'm safe...I need proof...lol...take care of you.

My oncologist (one of the biggies in the world of breast cancer) told me that research showed that tests before symptoms showed up did not prolong life and cost a lot of money. Plus they have side effects (sometimes including CAUSING cancer) of their own.For example, CAT scans and mammograms are known to cause a certain number of cancers in patients. That's right. The tests they use to find cancer also cause it in some of us. That's why they limit them to only as necessary. They do usually do some kind of a whole body scan right before or right after a case of cancer is initially diagnosed if they think it may have spread, but they skipped that on me with breast cancer since there was no node involvement, no bone pain, and therefore no reason to believe the cancer had spread. Isn't the same thing with you? You have already been shown to be vulnerable to cancer. You will have to have tests when symptoms show up and some of those tests will be CAT scans or PET scans or MRI's because those tests can show the doctor more of what is going on. But unless those tests are necessary and will serve some benefit, you don't want to do them. Even the blood tests are expenses that are not terribly accurate when it comes to breast cancer. Other things besides breast cancer can make them go up and sometimes you have cancer and they don't show it. A nurse practioner spent 20 minutes showing me how to do a totally thorough breast exam with palpataion and mirror examination so that I would be pretty dare good at detecting any unnatural changes in my breasts. I can check daily if I want, but for my own peace of mind and a more normal life, I try to limit it to once a month. Without too much trouble you could probably compile a list of symptoms to be aware of that might spell trouble. Things like a cough for over a month that won't respond to treatment, a sore that won't heal, a pebble-like lump under the skin, fatigue that won't go away, an unexplainable pain in part of your body, unexplainable bleeding. By all means, don't ignore such symptoms. Symptoms need to be followed up if they last longer than a month, but unnecessary testing is not good for you.

lfly

Hello ohilly,

I agree with cabbott. Go to regular check ups and then relax and enjoy life. If unexplained symptoms occur and last a month then it's time for concern and a call to the Onc and let him decide what to do. Even then try to take it easy. I've been told that stress plays a huge part in recurrence. Today i try not to be so stressed that i forget my Onc and God are taking care of me. I've been spared 3 times now by His grace. I may get in a car wreck when i leave here in a few minutes and be killed. If i worry about that and don't leave my house then what have i lived for.

I know now that all i have in this life is this one moment. I'm not guaranteed the next moment...ever. Today, I live each moment knowing i may not be here the next. What i mean is i try to enjoy each second today worry free. When i get new symptoms i tell Onc and he usually orders some scan or x-ray.

CA is tough but it doesn't have to invade every moment of my life. Chemo is worse than CA in my opinion. During times of chemo the fatigue brings about all kinds of fears and needless excessive worry. I needed chemo so i did it and i feel for everyone that has to go through it. Why go through all that to be miserable worrying about recurrence.

Keep your head up and your eyes on the prize. That old saying has so much more depth for me now. "Life is to short for..."

I don't worry about my health like i did in the beginning. I am more responsible about new symptoms that don't go away.

Have a good one.

3cbrca

Ohilly
I had a 23 positive nodes that had had alreay begun to travel (macrometastatic) and the follow-up is the same for me. It's been a year since my surgery and I am only now beginning to relax. Initially, my thoughts were that I needed daily MRIs. Now I am getting more comfortable with a yearly Pet Scan and a visit to the doc every three months. Every twitch in my head or confused word is still "brain mets". I've watched it too.

The doc at the UoC will probably tell you the same. I am working really hard on keeping my mind in check and to remain aware of a pain or a twitch that is really different and may need checking out, and ignoring all those things that were wrong before I got breast cancer, that are still wrong. It's not easy, but I am in a much better place with it than I was a year ago.

S