how to know if recur after bilateral

ohilly

Okay, I am now settling into my post-treatment life. My hair is growing back (although still very fine and short) and I feel good. I am even starting to get back to my old activities, book clubs and such. I had bilateral mastectomies and am BRCA 1, so now my worry is: how would they know if it comes back? I have asked doctors about this in the past and read numerous sites on the internet: they all say that tests and scans, blood markers, mammograms, MRIs, etc. are not recommended and are not the standard of care because they have been found not to extend the patient's life. Basically there is self-report of any symptoms and visiting my oncologist and breast surgeon every few months so they can 'palpate' me and feel for lumps, etc. I should mention that I take Femara and am in a clinical trial where they give me Zometa (a bone drug that is thought to prevent recurrence in early stage bc). So my question is: those of you who have had bilateral mastectomies, how are you monitored? I plan to ask my doctor a more direct question (how would he know if it came back and what about checking for cancer behind the implant) when I see him in a couple weeks. Any suggestions of other things to ask him, or other information about monitoring after bilateral would be appreciated. I'm starting to relax, and then it's like I wake up and realize, hey, all this could be taken away again. Ohilly

artizan

There are no guarantees
There are no guarantees but you have done everything that you can to prevent recurrence. Knowing the terrain of your chest wall is as important as doing self exams was before. If there is anything suspicious you call your doctor. Someone in another post mentioned waiting for the other shoe to drop and it can be like that. I had bone scans for the 1st few years and saw my surgeon on an annual basis or when something scared me. Now I don't see anyone special (aside from regular annual checkup)and bone scans are no longer being routinely recommended. We must be vigilant about our health but we must also believe that we have done what we can and move on as bravely as we can.

Chellebug

I'm monitored the same way
It's been seven months since my bilateral mastectomies and my doctors have told me exactly what they've told you. (That's reassuring to me!) Some days, it makes sense to me and other days I feel like there should be more tests. EAch time I see one of my doctors I ask them to re-explain 'why' they aren't doing any follow-up tests. Even though I know the answer, it reassures me.... especially when I get the 'hey, all this could be taken away again' feeling that you mentioned you get from time to time. It is a good idea to be familiar with the new contour of your chest and to continue with self exams. If anything peculiar were to come up, then you'd notice. I'm still in treatment, finishing up my year with Herceptin. Just started Tamoxifen about 8 weeks ago. I'm also in a clinical trial with Zometa. Probably the same trial you are in. Those things give me some comfort. I continue to see my medical oncologist, my surgeon, and my radiation oncologist. The visits are spread out between them. Each time I go, I get 'palpated.' I always bring up any odd symptoms or strange side-effects I'm having, even if it's small. My oncologist ordered a bone scan a couple of months ago when I was having persistent back ache for over 6 weeks. The scan came back fine and a few weeks later my back stopped hurting.

I suppose I have no advice on what to ask, but at least you know there's someone else being monitored in a similar way.

zahalene

As you know....
I began this wild ride over 22 years ago...
I am surprised that follow up is so minimal these days, as reported by others here.
I saw my oncologist every 3 months for the longest time after chemo was done, then went to 6 months and finally to once a year.
Every time I went, beginning with the 6 month visits, I had a bone scan (yep, 2 a year!), blood work, and chest x-rays. The chest x-ray was the way they found the bone cancer in my rib cage 10 years after the two mastectomies.
I am now down to one visit a year with no bone scan or x-rays, just blood work. Other than that I can report anything 'unusual' at any time I feel the need.
Maybe my onco keeps me on his to-do list because I am like an interesting fossil that he wants to keep referring back to, who knows? LOL

young_one

Monitoring
I have seen this question asked so many times. It is a horrible feeling to "not know". I will tell you, though, that I am on the flip side of the coin. Like you, many of my friends just have exams. Some have exams and bloodwork to check tumor markers. I have exams, bloodwork, PET, CT, and bone scans every 3 months. I wish I didn't. There are only a handful of patients without mets that this applies to. My anxiety is extremely high for about a month before and X number of days until I get the results. So, if you do the math, I have as much time with extreme anxiety as not. This is a quality of life issue for me. I live between scans and I want more "in between". So, I would say if you want more monitoring, ask if they can do tumor markers. Some say the standard of care argument probably has something to do with limiting your exposure to radiation. They don't want to overexpose you unneccesarily. But checking your tumor markers does not carry that risk. You might be able to make your argument for tumor markers. If you really, really, really want to be scanned once in a while, fake a pain. I hate lying but if it gets you the peace of mind you need it might be worth it.

Joycelouise

young_one said:

Monitoring
I have seen this question asked so many times. It is a horrible feeling to "not know". I will tell you, though, that I am on the flip side of the coin. Like you, many of my friends just have exams. Some have exams and bloodwork to check tumor markers. I have exams, bloodwork, PET, CT, and bone scans every 3 months. I wish I didn't. There are only a handful of patients without mets that this applies to. My anxiety is extremely high for about a month before and X number of days until I get the results. So, if you do the math, I have as much time with extreme anxiety as not. This is a quality of life issue for me. I live between scans and I want more "in between". So, I would say if you want more monitoring, ask if they can do tumor markers. Some say the standard of care argument probably has something to do with limiting your exposure to radiation. They don't want to overexpose you unneccesarily. But checking your tumor markers does not carry that risk. You might be able to make your argument for tumor markers. If you really, really, really want to be scanned once in a while, fake a pain. I hate lying but if it gets you the peace of mind you need it might be worth it.

Young One, I am with you.
Young One, I am with you. It is now time for my first year exam and I am dreading that the onc. will make me take tests. I am just getting back on my emotional feet. If I do have something wrong, the quality of life of dealing with it is so yucky that I want to delude myself a little longer. I know intellectually that I should treat everything as soon as possible, but dang, I want a few good days, months. Sigh. Sometimes (always?) this C thing sucks.
I hope with time that the all clear test results start diffusing the anxiety for you of taking them. May you only have good news from here on out! Love, Joyce

NorcalJ

Femara
Are you taking Femara as part of the trial, or did your doctor just put you on that one instead of Arimadex?

My Dr. is giving me the choice between the two. I know they are basically the same, but apparently some people do better on one than the other. What are your experiences with the side effects of Femara?

I also ask the same questions about follow up after surg., chemo, and rads. THEN WHAT??? And how well can you palpate and be familiar with your chest anatomy if you have implants?

Thanks for the post. Someone always asks exactly what I've been wondering, and everyone gives terrific answers---Tnks to all you brilliant women!

cabbott

I asked my oncologist the same questions when I was finished with all the surgeries. He went through the same list they have for regular patients whether or not they have had cancer diagnosed in the past: stuff like sores that don't heal, a lump that doesn't resolve and doesn't belong there, a cough that won't respond to treatment, unexplained loss of weight or lack of appetite, bleeding without a known cause, unexpained bone pain in a specific spot that keeps getting worse, headaches that don't respond to conventional treatment and keep getting worse... Not to give you nightmares, but when I reached the 4 year mark, I started having a respiratory infection that wouldn't respond to any antibiotic the regular doctors tried. Finally, after about 4 months of trying everything,my regular physician ordered an xray.Then he followed up with two CAT scans about 3 months apart. Yep, I had cancer again. This time it turned out to be lung cancer. Problems that won't resolve are the ones to watch out for. They may be a problem not caused by cancer, but even then they need to be checked out. As long as you have a competent regular physician and he or she knows you have a history of cancer, you are covered. Doctors are thoroughly taught about recognizing cancer and are fairly viligent about checking their patients for reoccurances. Most will be after you to a regular pap test, colonoscopy, and yearly physical. It is more important to remind them to check you for the other diseases you are likely to get with age like heart disease and osteoporosis than cancer once you are diagnosed. Sometimes they forget you are more than just a cancer patient and cancer isn't the only thing out there that causes problems. Good luck!

C. Abbott

ohilly

NorcalJ said:

Femara
Are you taking Femara as part of the trial, or did your doctor just put you on that one instead of Arimadex?

My Dr. is giving me the choice between the two. I know they are basically the same, but apparently some people do better on one than the other. What are your experiences with the side effects of Femara?

I also ask the same questions about follow up after surg., chemo, and rads. THEN WHAT??? And how well can you palpate and be familiar with your chest anatomy if you have implants?

Thanks for the post. Someone always asks exactly what I've been wondering, and everyone gives terrific answers---Tnks to all you brilliant women!

Femara
My doctor just put me on Femara (not because I'm part of the trial) but he did say Femara and Arimidex were pretty much the same. So far I have no side effects at all with Femara.

Ohilly

Eil4186

tests
I didn't have a mastectomy. I had a lumpectomy. But I have yearly MRIs due to dense tissue. I still see onc every 3 mos., surgeon every 6 mos. and rad. onc. now annually. It has been 2 &
1/2 yrs since dx. I too am in the bisphosfonate trial. I am in the clodronate arm. I will be finishing up my 3 yrs. on the drug in July and followed for at least 10 yrs.

I was surprised that after all this time Zahalene is still seen by her onc. 2x a year. I assumed that if you are not in a trial that they would only follow you about 5 yrs or so. Its also surprising that she is still having so many tests still. I have always read that they don't accomplish anything. I kind of wish that I could be tested more because it might give me more peace of mind.

Well, I know what you mean about feeling like you want to do more to monitor. But I guess we just have to leave things in God's and the doctors' hands. And, try and enjoy every moment we have.