USPC - how to approach my specialist with questions regarding treatment?

Thank you! Not running across many of those ladies on here so far.

West Cancer Clinic in Memphis wasn’t comfortable with wait for systems and ordered the CT scan

Willow, I'm so glad you had the chemo first time around; that might be why you're still with us. That first round of chemo is supposed to do mop-up. However, your cancer and mine (MMMT with a serous carcinoma element) are known for being sneaky. I really do not think "saving your chemo" would have helped. I believe you can have multiple rounds of carbo taxol as opposed to say, ifosfamide. I have many oncs all over on my team, and I agree MD Anderson and Alabama, for example, do not do scans routinely. My other oncs--Arkansas, local in Austin, do, and after some agonizing, I am more comfortable doing scans, even with some theoretical longterm radiation risk. Dr. Birrer even called for one halfway through chemo, which I did. Having said that, your local onc did a scan pretty quickly (6 months) after you finished chemo, right? That seems like pretty good care. I had another one post-chemo and was going to get one 6 months from now. Maybe I'll move that up, but 3 months post the post chemo scan seemed excessive...best of luck to you. Hang in there. Lots of women on here have survived recurrences just fine.

Nancy, how old are you? I'm just turned 57 this week. I was reasonably healthy going in (mildly obese, pre-diabetic, some hypertension). Chemo (carbo taxol) was not fun, but I'm very glad I did it. However, as I mentioned above, while your diagnosis is bad, mine (MMMT) is worse. I have been researching your cancer because it's mine, and I have seen that some oncs don't do more for yours at 1A, whereas for mine, chemo (and radiation) is recommended almost every single time for 1A. Talk to your onc more about what (s)he perceives as the "risks" of the chemo you'd be getting. Find out the names of that chemo and head back here to get more info. If you have the means, get a second opinion from a major university. Often insurance will cover that; they covered my 3rd and 4th opinions too. I know who the experts are for my cancer, but not for yours. However, MD Anderson (Houston) is never a bad choice. If you get agreement, you get peace of mind. If you get some disagreement (as I did, though not re chemo), you at least have more information. Best of luck.

Hi Nancy, I have a several posts to answer, as I've been completely offline, so sick for a few days with pain & nausea & temperature control issues. (Chemo's last gasp.) When it comes to it, we're all guessing, weighing the info we have to make our best choices. Nancy, with your lung condition, you have more to weigh than I did; I did not have worries about my immune system going in. I believe it was my MD Anderson doctor who said that while carbo taxol does take out your immune system, it bounces back faster w/that combo than with some others. Not sure that helps you though. My numbers were fine until the labs just before Chemo # 5. My labs on 3/1 were better--cell counts fine, magnesium back up), but my liver labs are still off. Re scans & follow up treatment above, to recap, I was MMMT-E, Stage 1A. I did chemo--carbo taxol 6 rounds & brachytherapy. On Tuesday my gyn onc recommended doing nothing else, even getting the port out. Exams every 3 months. CT scans every 6 months, but every 3 if I want that, w/ caveat insurance may not cover it. Either way, she'd alternate chest/abdomen/pelvis with just abdomen/pelvis. She said Dr. Birrer at Arkansas agrees. I will be getting some more input because it makes me nervous to do nothing given my cancer recurs a lot even for Stage 1A. She told me to "focus on the positives for now"; I found that unhelpful. "Focusing on positives" is in no way incompatible with looking for therapy to prevent recurrences, as is standard for breast cancer patients. (See tamoxifen, aromatase inhibitors.)

Willow oaks, thank you so much, eternally, for sharing your story. It will save so many lives. I just shared it with my husband, a doctor, and he said that was his #1 beef with Dr. Arend, Ala--that she doesn't do scans. Jazaeri at MDA too. I am so glad though your mets were caught before symptoms--God bless you. Re "saving" chemo, I was told unlike say ifosfamide's cumulative effect on the heart or bone marrow, you can get multiple rounds of carbo taxol w/o problems (and variations if you get allergic), so you did not need to "save" it. The only thing they (gyn oncs & med onc) told me to "save" was abdominal radiation (brachytherapy was okay) until we really needed it because that would be limited. I really don't think you should second guess yourself about the first chemo. (Or the lack of scans--why wouldn't you trust MDA at first glance? I call it CancerWorld.)

To scan or not to scan, that is the question! I had my treatment at Mayo and they do not recommend routine scans. I was given a scan immediately after finishing chemo/radiation, and one at 6 months post treatment. This was to establish a baseline and then see if the chemo/radiation worked as some of us have progressed while on chemo. After that that they do not routinely offer scans. The reason they gave is that studies showed that scans do not affect the PFS, or OS and there is a cost benefit to not doing them. Remember this would have been over a large population so as a group that could be true, but we are not a group, we are individuals and personally if I am having serious issues, I want a scan. There have been a number of folks here whose recurrences were caught early with a scan, but I do not remember if the scan was routine or if the scan was done in response to an acute complaint. And we do not know if the scan actually prolonged their life. That being said, I have gotten a scan once a year due to issues with pain, and Mayo ordered them as needed so they do allow scans when they think it is necessary. I also developed an allergy to the contrast dye so I have to take extra precautions before every scan to avoid going into shock, so getting a scan has other downsides for me.

Denise

Now I’m trying to decide what to do. Thought I might make into a blind trial but it has closed anywhere close to me. Can’t seem to get input from MDA without a 20 hour round trip drive. Don’t know if I need to delay treatment bouncing around too much. Seems so far I’m left with SOC answer of the original Pac/Tax plus Avastin for reoccurrence. Does anyone have experience with the results if that? She says the reason it’s SOC is that it does sometimes or often work to some degree.

Hey, Nancy

I’m sorry you’re struggling with all of this. I still can’t be of help as to your kind of cancer, but I did want to try to help with your emotional suffering. It IS still very new for you…just three months.

For several months after my diagnosis the first word in my head every morning was “cancer.” I hated that! Then for the next 4+ months I was consumed trying not to die from the chemo! 😁 That’s a bit of an exaggeration, but not too much! I was completely distracted! My first thought every morning became, “Don’t throw up!” And then there’s the post-chemo scan anxiety. And for me another 3 mths until the second CT was clean! (They we’re watching a couple of benign seromas.)

My point…..this is a process, just like in other of life’s tragedies ….getting from one step to the next…doing your research….making decisions…THEN…I think it will recede from the front of your mind and then you’ll be better. It WILL get better!

❤️❤️❤️, Alicia

Thanks, Forherself. I will say scans that are clear are enormously comforting. One part of me agrees re the radiation risk, but the cynical part wonders if it has to do more with cost. Remember the huge fights over having mammograms covered? Anyway, it's moot for me, because my local onc will do them every three months if I want that. I might split the difference and start w/ one 4-6 months after my standard post-chemo one, and then if all goes well, space them out further. What about my local onc's idea of alternating chest/abdomen/pelvic w/ just abdomen/pelvic? That would reduce radiation some. Someone here or on Facebook said, "If you get 10 full body ct scans, you'll get leukemia". I do know a couple (husband AND wife) who got chronic leukemia but I don't know that they had any ct scans. Also, none of us, I think, are getting full body ct scans. I do pat-downs at the airport and limit my dental x-rays. Overseas flights give you some radiation too, but if I get the chance to go to Europe again, I'm taking it! :-)