Long-term care

Momine · January 2012

I am finishing up active treatment soon. There was chemo (FECx4), surgery (BMX), more chemo (taxotere x4) and now rads.

I am 48 and was not meno-pausal when DXed.

My onc and surgeon both think I should have my ovaries removed (mom had ovarian cancer) and go on an AI.

Cancer is ER+ and PR+, HER-.

I am curious as to what kind of follow-up care people get. What kind of tests and how often?

Thanks.

diana50 · January 2012

i was 49 years old when diagnosed. surgery., TAC , rads and arimidex for almost 6 years. i had already had ovaries removed when i was 44 and was estrogen patch for5 years before i was diagnosed with estrogen pos cancer. i think removing all estrogen as possible is important for estrogen post women. remember; your cancer grows because of estrogen in your body.

i was in a clinical trial back in 2002 so there were specific things i had to do. i was followed every three months for quite a few years; initially had scans...but now i don't unless there is a problem. i still see the onc every 6 months for blood work and i am one of those patients who like to do tumor markers. the first couple of years they watch you pretty closely; to make sure they got the cancer cells. if you trust your onc it is really ok to listen to them. this is what they do all day; treat cancer patients. i also think everyone is a little different so what works for one person may be different for someone else.

congrats with finishing treatment. it is a big milestone. hang in there.

Gitane · January 2012

At dx an MRI pre and post chemo, a PET/CT pre chemo, and the usual blood work. The first 3 years I had a physical check by my oncologist every 3 months. He drew blood to check my general health and Tumor Markers. At year 5 the visits moved out to every 6 months but they're the same. No scans. I could probably get scans if I had symptoms, but there has been no need up to now.

It's great that you are soon to be done with treatment. Take good care, G.

Momine · January 2012

Diana, thanks. Those first 5 years, did you have ultrasounds? What kind of blood work? I need something to measure by, since I am shopping for doctors. There is some weird competition between my surgeon and my onc. Apparently, the surgeon will be doing follow-up, and I don't think he is right for the job. I asked the onc what he would do, and he sort of vaguely said "check you every 6 months."

Gitane, thanks. Which tumor markers do they test for? Are you on any of the hormone therapies?

diana50 · January 2012

momine

the blood work was pretty standard; complete blood count, metabolic blood work (liver enzymes, calcium, bun ,pretty standard.) my onc also does tumor markers....CEA and CA27.29. she stopped doing the CEA after a few years and just uses the CA27.29. i believe she used to scan chest and belly....every so often...but that was right after i finished treatment. i haven't had a scan for quite a few years. you don't want to have scan after scan because the stuff they use is not good for your kidneys. i had a PET at diagnosis...and had a PET a few years later when i was having some rib issues. everything was beign. i try to avoid scans now. good followup after treatment is payiing attention to your body; getting used to the changes from treatment. they say the 3 week rule as far as returning to onc if you are having symptoms.

remember, your onc does this all day. this is their job. there was more anxiety for me right after treatment then the last years. i don't worry about it anymore. i figure if it comes back i will deal with it then. i like having the blood work done and i get my results . i also have access to all scan results via the hospital webside.

i was to see my surgeon every year for follow up but i stopped going after a couple of years. my onc follows me and we have a great relationship. i never did followup with my rads onc. my surgoen is great too; i would go and see him if i was concerned about something too; he was the quarterback of my onc team. remember, the onc TREATS the cancer...they also diagnose but usually your onc is a referal AFTER yiour cancer has been identified either by biopsy or surgery. you need to have a doctor you trust and have a good realtionship with. they will be in your life for a long time.

hope this is helpful. hang in there. it is hard especially right now and so soon after dx and treatment. it will get easier.

diana

Gitane · January 2012

momine,

My oncologist gets tumor markers CA15-3 and CEA every 6 months along with my other blood work. Zometa (a bisphosphonate infusion) is then given to prevent bone loss due to the Femara I take (an endocrine therapy that is an aromatase inhibitor).

If you are going to be followed closely by a doctor, it makes sense to me that it be your oncologist. I am seen by my plastic surgeon, too, after my reconstruction, but I am only seeing her every 2 years now. I don't see my breast surgeon at all since I recovered from my mastectomies. This was her suggestion. I'll only see her if an issue arises related to the surgeries.

Hope this helps. It's a lot of work lining up good doctors, but well worth the effort if you can find someone you respect and trust. So important. Hugs, G.

Momine · January 2012

Thanks to both of you.

Diana, the issue is that the surgeon wants to follow me. No onc. If I ask the onc to follow me, then I will have a problem with the surgeon. To get in to see the surgeon, I have to argue and plead with his assistant, the onc is not much better. I have an appointment with the surgeon next week, so I will see what he says. But my feeling is that I need an onc, and someone who will see me or return phone calls at least when needed.

Gitane, my breast surgeon wants to be the one overseeing my hormone therapy etc, and he does not, apparently, want my onc involved. I do not feel good about a set-up in which people who are supposed to form my team are competing against each other for my dollars and disparaging each other.

diana50 · January 2012

when you see the surgeon next week; ask him HOW he is going to follow you, how often appts and what kind of blood work...scans...etc. will you see him every 3 months.or every 6 months. you have a right to know how this is going to happen. the other thing is this; if you have oncology questions, you have a right to go in and see your oncologist to have those questions answered. maybe get a second opinion from a different onc or at least find a doc who isn't so hard to get into see. does this surgeon always see the cancer patients after he has done the surgery?

do you have a regular primary doc?> maybe he can follow you if you are comfortable with that. i would be looking for a doctor i was comfortable with and can follow me as someone who had cancer.

well, i hope this gets worked out for you. be assertive; you are the consummer and you pay the bills.

hugs.

Momine · January 2012

Thanks, Diana. I am not sure what the deal is with this surgeon/onc duo. It does seem odd to have a surgeon be in charge of follow-up care. I don't have a primary, no.

I have the name of another onc as well, and will be collecting opinions. My current onc wanted to give me a complete hysterectomy and then put me on tamoxifen. That sounds odd to me, since the hyst would make me menopausal and would call for an AI, not tamox. When I told the surgeon, he said, "No, no," and said he wanted the ovaries out then AI. But I thought it was weird that the two of them, supposedly working together, gave me completely different advice. So I am not sure I want to deal with either one on an ongoing basis.

apple · January 2012

i'd go for an onc. my surgeon gracefully bowed out after his job was done.. he said he wanted to see me in a year and i told him that i was married.

Momine · January 2012

Apple, lol. The surgeon has been excellent in many ways, and he is clearly a highly skilled surgeon. But, yeah, I am thinking an onc would make better sense.

Leah_S · January 2012

Momine, I also think it makes more sense to follow up with onc. And yes, getting another opinion from another onc sounds like a good idea to me.

Best of luck.

Leah

IllinoisNancy · January 2012

I saw both my onc and surgeon after BC in 2006. In 2010 I saw the onc and they didn't know I had a recurrence. They said it was just radiation scarring. Thank God I saw the surgeon a few weeks later and she knew right away that it was a local recurrence. My breast surgeon is so much better than my onc. It takes a village to keep us going after BC. Good luck!

Momine · January 2012

Leah, thanks.

IllinoisNancy, good point. My BS does have excellent hands and eyes, so I want to maintain my link to him. Just not sure he is the one who should be in charge as it were. It is quite tricky managing these doctor people.

financegirl · March 2012

From what I understand my surgeon will also be the one monitoring/directing a lot of my after care. He is an oncological surgeon who specializes in breast cancer. I've also been seeing him for over 20 years so I don't really mind this setup. It works for me also because before beginning this journey I researched/selected one of the best oncologists around and he unfortunately retired 7 months later and has been replaced by "Doogie Houser". I honestly think I may have a pair of shoes older than the new guy.

The onc will still deal with the bloodwork since I am on Arimidex and also for blood markers. Other than that both said that scans and other testing done on many other cancer types have a lot of false negatives and positives for breast cancer patients and as posted above scans come with their own drawbacks so they don't really like to do a lot of those. Said I'd be having mammos along with ultrasound and maybe an MRI if he thinks it is necessary along with checking the bloodwork. Arimidex causing slight bone and joint pain but, if years from now, I've had no recurrence it will all have been worth it.

Long-term care

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