Calling all TNs

Well, the elimination of aspargine, leaves me down to just air for a diet. The list of what aspargine is in, is everything.... https://www.sciencedaily.com/releases/2018/02/180207140401.htm

That's not comforting at all ... seriously, what is left for us to eat? It said foods low in aspargine is fruits and vegetables. Hmm....will have to embark on what to do with this new info.... I always learn so much on these boards. Can't imagine not having fish or eggs or almonds ....

I've probably asked this question here 15 times but I'm still not clear on the answer. QUESTION: what follow-up should I expect/demand in the first 3 years after active treatment?

I don't put my diagnosis and treatment in my sig-notes anymore. Here are the basics. Diagnosed 2/19 with IDC/DCIS. Lumpectomy and SLN excision in 4/19; clean margins, 0/3 nodes. Tumor was 1.5cm. Grade 3, TNBC. Chemo began in May, 4x dose dense AC. The original plan was 4x TC, but I reacted to the Taxotere and wasn't able to continue with it. Radiation 20x including 4 boosts, completed in 9/19.

I've seen MO, RO, and BS for initial follow-up appts. Next scheduled BS appt is in 11/20. No more appts with MO unless there is a problem that comes up. RO has a survivorship clinic I will begin next month. I don't know yet the sequence of appts they schedule.

I'm supposed to have first follow-up mammogram and whole breast ultrasound at the end of this month. I just looked at NCCN standard of care and it said not to have mammogram until at least 6 months after radiation ends. That would put it in March, not January.

All very confusing.

Any thoughts on this? Thanks in advance.

I'm not really okay right now. I'd like to say I am, but it's not that great. I had reduction surgery in mid-November and was recovering from that when I got a very bad cold that took me out for 2 weeks. Then I was gone for a week of Christmas with family, which was largely great but exhausting. Then I got another cold, apparently got dehydrated, and fell on 12/30/19. I was briefly unconscious, went to the ER, had fluids IV, a chest Xray, brain CT. A bunch of blood tests, urine labs, EKG.

My iron is pretty low, so I'm anemic. That could explain why I am tired all the time and get winded easily. My TSH is low. My glucose is relatively high at 104. I have my annual exam with PCP in 2 weeks, so have made sure to highlight all this for her (same medical system) and figured we would review it then. I trust her to refer me back to MO if needed.

I finally managed to get to the gym this morning for the first time in a month (pre-worst-cold-of-my-life) and am a tremendous wimp. Best thing I have to say about it is that I went.

Thanks for your kind wishes.

Mountain Mia, sending you hugs!

And you know, don't press yourself to go to the gym if you still aren't feeling well. Sometimes, some really good TLC and self indulgent behavior does wonders. So maybe curl up on the couch, netflix, drink something hot, and relax a few more days. Maybe instead of the gym working out, sit in the steam shower there and sweat the toxins out another way. Or just sit outside in the sun for a bit. Sometimes not going can be just as important to overall health as going.

MountainMia; I have the same questions and was frustrated by the answers. I finished active treatment in early August. Saw breast surgeon late December, who said I'm just scheduled for a regular mammo/sono one year past my last one-which is when I was diagnosed, late January. So i have that scheduled. Otherwise, nothing. I asked about a million different things, and felt like the take home was, we don't screen more frequently because it doesn't improve survival. If you have a local recurrence, that's less likely and treatable anyway. If its mets, catching it early does not improve anything: either you respond well to the drugs that are out there, or you don't, whether you catch a met at the first hint of a symptoms, or later on does not make a survival difference. So just, you know, try not to think about it! I said it sounded fatalistic, and he said, well, but maybe fatalistic in a good sense, in that you've had the most powerful treatment and the odds are good that you'll be fine, but yeah, its possible there could be mets down the line, we don't know and can't do anything more to prevent that.

So I try to focus on the positive. I have no lasting effects from the chemo (unless of course I get heart problems or leukemia down the line from the AC). I exercise very intensely, 4-5 times a week. My diet is not great, and I still drink a few glasses of wine here and there. I don't know wether I had a PCR because I had my lumpectomy before the chemo. Some days I barely think about it. Other days are very dark.

I get the same blood panels as I did during chemo... I think they are mostly looking to see if liver markers, or something else, spikes or plunges. And looking also for any lingering post-chemo blood cell issues (which can be a SE of chemo). So far my blood work has been great/ unchanged. I suspect if AST went up they'd take a closer look at my liver, etc. So far so good. And I get a physical exam when I go in (I like having a second set of hands on my boob, lymph nodes, etc.).

I am not certain if they are doing cancer markers on me, probably not-- as in my case when I was full of cancer the markers were very low.... so I doubt they tell very much about me. I decided to stagger my imaging and get mammos in July and any other imaging I need in Dec/Jan. (I have a scrip for a US-- I asked for it as a "second peek" with a six month stagger that is less invasive than a MRI-- but I haven't scheduled it yet.) I think I will go in this week. I figure, that way if something gets going in my breast I would know a bit sooner.

My MO told me hed order an MRI if I needed one for peace of mind. So far Im doing ok without that.

thanks, moth!

ucfknights: try to remind yourself that you will have plenty of time to worry later if there is a definite reason to wory. For now, if you can try to rest that worry gear, and believe the best and see how things go, it will help you have stamina to actually assist your Mom. Put the worry into acts of love as much as you can-- you are worried because you love your Mom, so instead of fretting, put the love into action-- leave her a note on her mirror or bring her favorite smoothie or whatever. You BEST help her by taking charge of your own worry and that means putting it away, until needed, as much as possible. It will be there and come back no matter how little attention you pay to it, but you do have the ability to dismiss it to the future and remain in a positive mental space more of the time.

VL22, thanks for sharing your experience. It sounds like I just need to be patient. I guess part of what surprises me is that in October and November, before my reduction surgery, I was feeling really well, and pretty energetic. My strength seemed to be coming back and endurance was improving. Then all the progress stopped and I went way backwards.

I actually have an appt with PCP tomorrow, which was made for me to follow up after my fall/concussion. So I'll be able to check with her on some of it then.

Thanks, everyone, for the encouragement and wisdom.

MountainMia - that’s what is wonderful about having this place to share - we know exactly what you mean! My last bloodwork at my regular Dr had my white blood cell count a itty bit low. Everything else was fine. I was supposed to go back like a month ago to get it rechecked - I haven’t because I’m scared. I feel fine and I really think it’s nothing but....and there go the thoughts that keep me up at 3am! I plan to go after my kid goes back to college after winter break in a week.

Cancer just sucks - I just love when I forget about itfor an extended period of time.

Very interesting Santabarbarbian, thanks for the site?

hi ladies, I'm wondering who here gets there ca13-15 checked? My mom does anddo not understand it

Hmm, I just had blood test for 1/30 appointment, and along my regular blood tests, they ran cancer antigens this time. Maybe annual? (1 year post surgery?) I find it funny as they were low when I was full of cancer.... we shall see....

I believe all is well-- but it's nice to get the blood tests to confirm!

I hope your mammogram is a similar comfort!

Thanks Santabarbian. Great article.