+ Reply
Log in or Register to participate in these discussions
What should a follow up treatment plan look like post chemo and radiation for TNBC?
SarahDawn
24 Posts
Hi there
I have completed chemo (March 25, 2021) and radiation (May 21, 2021) for TNBC (stage 1, grade 3, clear margins). My follow up is next week with chemo oncologist. How long post treatment are you checked to see if everything went okay? How long do you wait for Mammo or Breast MRI? Just wondering what I should be asking so I don't miss anything. Please share what your follow up looked like. Many thanks!

21 Replies
Runner Girl
1688 Posts
Hello SarahDawn

Congratulations on completing treatment. I too had questions about the follow up, etc.

I go every 6 months for a mammogram/ultrasound, but they are watching a couple of lesions on my left side (cancer was on the right). I'm going to tag a couple of our TBNC ladies to see if they can advise how their follow ups went. ashconEssjay

How are you doing now that treatment has ended?

Runner Girl
SarahDawn
24 Posts
Thank you Runner Girl. I feel completely wiped of energy, can't feel my toes still (I am sure that takes time) and my mind isn't clear. I feel like a scatter brain most days. I hope that will go away. Did anyone have blood work after their treatment? I am curious if my hemoglobin is low (because of no energy) and I get short of breath at times. Are my platelets low? Are my neutrofils good? I am trying to be patient and know that everything takes time but it is hard. I appreciate your time and response. It is good to know.
Runner Girl
1688 Posts
Hi SarahDawn‍ ,

It sounds like you have fatigue and "chemo brain". If you are able to be active, even getting out for a walk, will help with the fatigue. The chemo brain will get better in time. I recall that scattered feeling well and did not enjoy it at all. I found having a notebook and writing things down to be helpful, but there are still times when my mind completely goes blank.

Your body is in recovery phase now and it will take some time so be patient, although I know it is hard to do that.

Are you eating well, good, healthy foods?
Runner Girl
Essjay
1484 Posts
SarahDawn‍ congrats on completing treatment. Thanks for the tag Runner Girl

I completed my treatment for Stage 1 TNBC in June 2019. Like you I felt very fatigued and had some issues like neuropathy and some problems with my colon. I was on a return to work program and had to push it to get back in the time my workplace wanted. What helped with this was exercise. I found it to be like a savings account - put energy into exercise and get interest back as energy for daily living. I started running at this time (was breathless getting dressed at first), and it took me 11 weeks to go from couch to running for 30 minutes…I am now fitter and stronger than before cancer and thriving.

I had Lumpectomy and 5 nodes removed, ACT chemo and 20 doses hypofractionated radiation.

My follow-up includes an annual mammogram (the first was about 6 months after starting radiation), and an annual Breast MRI (because I have extremely dense breasts so mammograms miss cancer). I have six monthly physical exams (checked for lumps, lungs clear, weight stable etc). I saw the oncologist for these for a year and then she discharged me to my family doctor with a care plan. Any issue gets investigated. For example, I’ve had some back pain and I’ve had an MRI and a bone scan to investigate that (awaiting bone scan results).

I also had a couple of Zoledronic acid infusions - I didn’t get on with them and wanted to move on from treatment so I stopped them after 3 (was supposed to have 2x year for 5 years).

The neuropathy remains - its reduced a bit but I have problems with my feet. I just got new orthotics because the neuropathy has led to the development of multiple neuromas because of the way I compensate for the cramps when I walk and run…my fingers have very mild neuropathy which is more of an issue in winter than any other time - my hands get cold very quickly.

Hope that helps - a good question for your oncologist is about your follow-up plan. What things should you see a doctor about urgently, what things can wait for a check up…

best wishes, Essjay
ashcon
1886 Posts
Hi SarahDawn
Let me join the others in congratulating you in finishing treatment! Done just in time for summer! Tip: for the first year (possibly forever?) you'll want to avoid sun exposure, or at the very least, wear a lot of sun screen, spf clothing if possible, cover up, especially in the areas that received radiation.

I was treated for stage 3 TNBC, and had a double mastectomy between chemo and radiation, so my follow up care is a lot different than what you will likely see. What Essjay‍ has shared may be more likely of what you can expect.

This link on Follow Up After Breast Cancer Treatment may also offer some additional guidance on what your follow up plan may look like.

Did you do any covid-friendly celebrating after your last round of radiation?
Littlebeth
67 Posts
Congratulations SarahDawn‍ It is wonderful to put the treatment behind you but it is also a time when questions start to arise. I am three months ahead of you. I finished my treatment for TNBC stage 2B on Feb 10 - ACT followed by bilateral mastectomy and 25 rounds of radiation. So I won’t have mammograms, like you, but I did have a have check-up with my oncologist 3 months after my chemo ended and now every 6 months. I also had a 6 month follow up with my surgeon and have one more scheduled for next year. My oncologist will stay with me for 5 years although that is not the case for everyone.

Essjay‍ described the check-up you get. It feels like it is not enough and I was very surprised that there were no more tests done, including bloodwork. I developed post chemo arthralgia and my GP had sent me for blood work in March to check for inflammation when we discovered that I had developed neutropenia again. I had problems with this while on Taxol although my blood work had returned to normal after chemo ended. My oncologist wasn’t particularly concerned about it, though, so they are just following it.

I am still dealing with a number of side effects - neuropathy, brain fog, fatigue, back pain. Oddly enough, I lost my fingerprints from Hand-Foot Syndrome and they haven’t returned yet, if ever. I breezed through radiation with little fatigue at the time but it hit me hard about a month later. Pacing activities helps along with a quiet rest in the afternoon. However, exercise is paramount to recovery and I walk everyday and am working with a physiotherapist on a rehabilitation program that adds new stretching and strengthening exercises each week. I highly recommend a course on Brain Fog that was offered online through Wellspring. It helps you understand it better and teaches you a number of coping strategies. While it doesn’t take it away, it does help you deal with it.

Everybody tells you to be patient and listen to your body, which is good advice so I will pass that on. But it is also learning to adjust to a different body than you had last year and that takes a bit more work.I wish you well with your recovery.
JustJan
617 Posts
SarahDawn‍ congratulations on finishing treatment! It is a great feeling that’s for sure.

I was diagnosed with stage 1 TNBC, high grade in January 2019. My treatment took a different path than you. I had a lumpectomy and radiation (declined chemo). My oncologist ordered a baseline CT scan where an ovarian mass was discovered which also turned out to be cancer. So just one week after finishing radiation I had more surgery followed by chemotherapy. So my followup looks different than what might be the standard. I have had two mammograms since and surgeon wanted to do MRI but I was feeling scanned out and so we skipped it. I will be having another one in January.

The one thing that stood out for me in your post was shortness of breath. I would definitely encourage you to discuss that with the oncologist.

Good luck with your appointment next week.

SarahDawn
24 Posts
HI Runner Girl, yes I am eating very healthy. I walk everyday. Get outside everyday for more than 1 hour. I will get there :)
SarahDawn
24 Posts
Thank you Essjay! I have added that to my list for tomorrow.
SarahDawn
24 Posts
Hi ashcon!
Thank you for your advice and the link I will check out. Virtual celebrations with my family and friends. It was really nice. I really appreciate it. I trust you are doing well. We are all on different paths but same goals.
County Girl
24 Posts
SarahDawn‍ Congratulations on completing treatments. I had TNBC Stage 2a, grade 3 tumour, clear margins. 3 lymph nodes were taken and one had tiny cancer cells. I did chemo and accelerated radiation which I completed in December 2020 so I’ve been out of treatment for 6 months. I signed up with a Naturopath that specializes in cancer. She was amazing to help me recover from treatments. I was like you when I completed treatments. Fatigue, brain fog, neuropathy in my feet, shortness of breath while walking. I am currently doing great. I can walk 5 Kms a day and I play 18 holes of golf a day now without being tired. The naturopath was amazing to help me get to this point so quickly. I used Castor oil on my feet every night for a couple of weeks and my neuropathy has cleared. (Put castor oil on your feet, wrap in plastic and rest your feet on a warm pad each night). She also recommended supplements to help get my white blood cells back to normal and my blood counts increased to pre cancer levels.
For the next 5 years oncologist said I would have a breast exam by a doctor or nurse, mammogram, bone scan and blood work every 6 months for 5 years. I’m also taking Zoledronic Acid treatments every 6 months for 5 years. I’ve had one so far with minimal side effects. I contribute my recovery to exercise and the help of the naturopath. You are over the worst of your journey. Concentrate on healing and enjoying your life. You’ve earned it.
SarahDawn
24 Posts
Littlebeth, thank you so much for sharing and I wish you a uneventful recovery. I will check out Wellspring. Many thanks again!
SarahDawn
24 Posts
County Girl, thank you and I will look into a naturopath who specializes in cancer. I will also try the castor of oil for my toes. I am up to 2.5 - 3 km per day with walking but stop at times due to feeling winded. I haven't tried golf yet this year as I feel completely wiped. Thanks so much for sharing with me and I wish you continued health.
Congratulations on completing treatment SarahDawn‍ ! How did your appoitnment go?

Lianne

PS - if you want to "tag" a member as they have done for you above, you can type the @ sign and then start typing the member's screenname . You will seea list of matching members, choose the one you want and select it. It will turn blue and then the member will get notified that they have been mentioned.

Tommy
31 Posts
Hi Everyone, I am feeling so very lucky. I am interested to know if anyone else has had such a positive outcome, and should I believe it. I had my appointment with the oncologist yesterday and have been told that I will not have any follow-up treatment, other than regular physical exams and monitoring for any symptoms. She told me the cancer removed is stage one, caught early and that even though I am HER2+, treatment is not needed and would only cause me all those side effects with no benefit. So my surgery is all that was needed. I have another appointment with my surgeon later this month and then just regular check-ups with my GP after that I guess. I need to clarify what symptoms (and how bad they have to be) to be on the lookout for - the oncologist did give me a list (spoken not written) most of which I have forgotten, but I know nausea and diarrhea were on the list. This is a huge relief but part of me is having a hard time believing it.
Hope21
5 Posts
I finished chemo April 27 for TNBC-lobular. I had a lumpectomy in Nov. but there weren’t clear margins. My sentinel lymph node was clear. I had a single mastectomy on May 25. Now I’m waiting for the pathology. I’ve had one phone appointment with the oncologist and bloodwork needed and another phone appointment coming up.
SarahDawn
24 Posts
Lianne - my appointment went well. My chemo oncologist extended my sick leave for 2 months and will reassess. I am going to have blood work done this week. My next follow up will be Aug. 6th so I feel better after our virtual visit as she shared with me, it is normal to not feel 100% and sometimes it can take 4-6 months of healing post treatments. Just have to be patient and continue to exercise, eat healthy, stay hydrated and rest. Let your body heal. Thank you for telling me how to do that Lianne. I did not know how people did that with the @ sign.
SarahDawn‍ - sounds like a productive appointment. Happy to hear that. It definitely takes time, I would say for myself, while I improved each day/week/month I didn't really feel 100% like myself until almost a year. So be patient and take each day as it comes. Look forward to more updates.

Lianne
JustJan
617 Posts
SarahDawn‍ I am glad you had a
good and productive appointment with your oncologist. Based on my cancer treatment and surgeries my oncologist told me 6 months to a year. I have been out of treatment since the end of October 2019 and have just started to feel like my old self consistently for about the past 2-3 months. As I started to recover, I had days when I would feel great and days that were difficult to get through. I just listened to my body and did what I needed to do to rest and recover. So like Lianne_Moderator‍ said, it does take time and please be kind and gentle with yourself while your body heals. Wishing you all the best as you move yourself towards feeling well.
SarahDawn
24 Posts
JustJan, thank you so much. It gives me strength to hear from you and the others. Many many thanks :)
PAH
1 Posts
Thanks for all the answers to Sarahdawn's post. I just had my follow up but I learned from you guys beforehand that this FATIGUE/ANXIETY thing is totally normal. I thought there was something wrong with me. It is also nice to know that it may take some time to get over. I am a patient person and will just keep on doing things as I can without overdoing it. One good thing one of my nurses said to me during treatment was don't overdue it cause yourbody cant make it up like you could before treatment!
+ Reply