Survivorship/Care after treatment

I agree to keep enjoying life. Despite all my medical issues and appointments, I go for nature walks every day, take photos of little critters and flowers --- ahhh, so relaxing and peaceful. Get together with friends for lunch, game day, etc. I go to local tribute concerts once a month. All good for the soul! I appreciate every day now more than ever.

Wow! can I weigh in on this! I have just gone through a manifestation of the lack of coordinated care that is our health system today. The ONE thing you should do is search until you get a solid Primary Care provider, if it takes a half dozen interviews to get there. You must have one doctor (or health system) at the hub of the wheel. I had the "works" after my surgery (had to, I was Stage IIIc) and nothing during that treatment caused the problems I now have, just out of sheer neglect, lack of coordination, sharing of med info and lack of experience with post treatment cancer patients. Make sure you get a primary care physician that has the experience of treating cancer survivors. My guess is that the reason you are not getting solid answers re: a plan is that they don't have one. Of course each health system and location is different, but if I had it to do over again, I would have just gone to the nearest cancer center for their survivorship program. I'm going to do that now, but I've got some things to get under control first. I wish you the very best.

I can’t comment on texts and scans. After completing treatment for triple negative at the end of 2019, I am only having 3D mammograms and regular visits with my oncologist (who examines my breast).

I would recommend finding a good integrative medicine doctor. Mine helped me so much during treatments and beyond. Diet, exercise, supplements and so on. He did not try to sell me anything. This will not be covered by insurance but I felt it was worth it.

Best wishes to you, Cindy

Thanks for your response. About my mouth sores: I had surgery on left breast in September, a small tumor and slight hyperplasic area removed with good margins and no nodes. Followed up in November with a 5 day radiation therapy, No chemo. In late December the mouth and gum sores surfaced. I’m still dealing with this now, 4 months later. I opted out of the AI therapy and don’t take any meds. I am perplexed.

Thanks all for sharing - I too am so confused - being treated at Dana Farber, Boston. I have ILC - lumpectomy, no node involvement (57 yrs old, dense breasts, 2cm right breast, hormone +, HER-), 20 radiation treatments on right breast post lumpectomy finished end of Jan 2023 and then started Letrozole (biggest complaints fatigue and brain fog). I see oncologist's NP in May, 6 months after lumpectomy to discuss Letrozole affects but no screening until a year - October 2024 - with dense breasts I asked if I could get an MRI but my onco said current studies have shown no benefit of screenings before a year? But so many on this site have said 6 months mammo, ultrasound or MRI is recommended? I'm very anxious -margins very close but radiologist said that the radiation should have addressed that? Any thoughts welcome - thanks so much

Question: how soon after your treatment ended did you have your first MRI and ultrasound? I finish radiation on May 9. Can I wait 5 months and have those procedures in October? Thanks. (I’m trying to take the summer off and spend it with my family on the east coast. Live in CA.)

Because I had the mastectomy in 2013, I do not recall how soon I had the first MRI or ultrasound. We likely have different case specifics. For instance, I have the BRCA2 mutation. Your treatment should be individualized. I do remember I had a follow up visit and manual exam with my surgical breast oncologist every 3 months the first year, every 6 months the next 4 years and annually after that. I also saw a regular breast oncologist annually even though I didn’t receive treatment from him. I later discovered it was poor advice that I didn’t take an AI. I was going to a breast center so maybe their programs are more comprehensive? Keep asking your providers these questions about your case. I agree with a previous comment about going to a cancer center or breast center for integrative care. A single provider can easily drop the ball. Seek a second opinion if declining further treatment such as an AI. I hope you can spend your summer on the east coast.

Not sure about the scan time, but the rest sounds like a solid plan. I wish I had taken an AI the first time around. That may have prevented recurrence. I’ve been taking Letrozole for 26 months and will always. I started Kisqali at the same time so it’s hard to know which one causes which side effect. I started another med for non-related lung NETS (rare neuroendocrine cancer) two months after that. I can say fatigue is a main side effect, but all three meds cause that. Your radiation was so recent you may still have fatigue from that too. With any med, side effects can improve over time as your body adjusts. I think my fatigue was worse at first but I had also recently finished 38 radiation treatments due to a positive margin and very aggressive recurrent cancer. Seek a second opinion if you feel unsure. Best of luck to you.

It sounds like you are on the right track. It is one of the blessings (if you can call the new recognition of life's goodness) a blessing. But you have to admit, everything seems to be more important, brighter, and joyful now. Keep it going, fill you life with all that is good and beautiful. Smell the flowers, walk in the rain, feel the warm sun on your skin, and laugh a lot. Most of all enjoy the warm smile that is given to you (even by one who maybe passing you by on the street). Enfold yourself in everything that is good, pleasing to the eye and ear, and drink of life. We travel only once through this vale of tears. Choose the high road, and always remember "YOU ARE A SURVIVOR" .

Well said gina5009! ❤️