Survivorship/Care after treatment

Posted by joymccarthy @joymccarthy, Apr 14 11:13am

First of all: I complete treatment next Friday!! WooHOOOOO
My question now is, "What's next?"

I've asked my radiology team, the breast cancer center, and the Cancer Center. No one seems to have a clear line of action or direction.

I'd really like to know what I need to do, step by step, to give myself the best chances of not having this reoccur (I've already had one reoccurrence and don't want to go through this three times).

For my first diagnosis, I chose to have a double mastectomy and no additional treatment as it was very early and great margins.

This time, I want to do Every. Possible. Thing. I can – I had surgery, chemo, and am now completing proton therapy.

As you know, this is a whirlwind experience, a whole year of focus on health and managing life with cancer. But it seems like this journey just "ends" for me next Friday.

There has to be more, doesn't there? Like, what are my follow up visits? What kind of scans do I need to continue with for the next 1, 2, 5 years? What about bone density issues (I have osteopenia). And, most importantly, am I DOING EVERYTHING POSSIBLE TO LIVE MY BEST LIFE?? What about my life going forward? Nutrition, exercise, vitamins, supplements, personal care… ??

Does anyone else have these questions or feel like it's a hard stop at the end of treatment like I do?

Thank you for any suggestions, advice and/or support!!!
Joy

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Hi Joy! You've already had your share of cancer stuff for sure. After reading your story, I can understand why you feel like you just got dropped off a bus in the middle of nowhere. There seems to be a disconnect though. I would think you have an oncologist managing your case. Is that correct? That person should know what is next for you based on your case specifics. If you're asking the techs who give you chemo and radiation, I don't think they would know or maybe they have been advised not to give advice. Every case is different. I'll share my treatment plan that may not be the same for you, but will at least give you some things to ask about.

1st time breast cancer 2013. HR/ER+, HER2-. Stage 1, 0.8 mm tumor, BRCA2+, Ki67 = 17% moderately aggressive. Had PET scan. Had double mastectomy, 6-7 lymph nodes removed (clear), ovaries/tubes removed due to BRCA2+, physical therapy for lymphedema and range of motion issues, no chemo, no radiation, no hormone therapy per advice. I had followup visits with my surgical breast oncologist, breast MRIs for a couple years then ultrasounds annually. In 2020, a new oncologist told me I should have been on a hormone blocker. Disagreed with original team.

2nd time breast cancer now in chest wall and pectoral muscle 2020. Now listed as stage IV. Tumor 1.1 CM. HR/ER+, HER2-, Ki67 = 50% highly aggressive. Had a PET scan, brain MRI and bone scan looking for additional metastasis. No more found. Had surgical removal of tumor and some pec muscle, but there was a positive margin. One lymph node in chest removed – clear. I was told due to the aggressive nature of the cancer, some cells likely got away and traveled elsewhere in the body before we removed the tumor. Had physical therapy. Had 38 radiation treatments – 29 regular + 9 boost. Didn't have chemo because I have a rare hereditary neuropathy already causing pain and makes my nerves highly vulnerable to damage. I was told I would be left in pain forever after chemo because of my pre-x. I can't take pain meds. Specified I did not want to be left with chronic pain or misery — period. He stated due to the nature of my tumor this time, he wasn't convinced chemo would be beneficial for me anyway. Next I started on Kisqali pills (holds cancer at bay by keeping it from dividing) and Letrozole pills (reduces estrogen that feeds cancer – I'm post-menopausal). I have been on these meds for 2 years so far. At first I had CT scans of chest, abdomen and pelvis every 3 months for 1.5 years and now it has been 6 months and I'm just about to have another scan. If/when Kisqali becomes ineffective which it usually does at some point, not sure what's next. I just keep praying for nothing new on scans. Note that Kisqali is in the same category as Ibrance that you may have heard of. I have a local breast oncologist following my case. At first monthly, now every 3 months for oncologist, but every month I have labs monitoring meds I'm taking. I would recommend a breast oncologist over a medical oncologist who handles multiple types of cancer. I also still see the PA at my breast surgeon's office annually. I also still see the radiation oncologist annually. Of course, eat healthy foods and exercise, manage stress with meditation, breathing, walks in nature or whatever works for you. I highly consider quality of life when making treatment decisions. Meds cause fatigue and other side effects, but worth the trade-off. I still enjoy life. Yes, managing cancer does feel like a full time job. I actually have a rare neuroendocrine lung cancer as well, but different treatments and a lung NETS oncology team at UCLA for that since it's unrelated. I hope this is helpful and at least helps with questions to ask your oncologist. I hope you find answers to your questions. At the very least you should have followup scans periodically. My best to you!

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joymccarthy @joymccarthy
Not sure where you received your treatment, many institutes provide a Survivorship Care Plan to address some of your questions. Ask your care team about a Plan.

You might want to check out this discussion topic: Mayo Breast Cancer Survivorship Clinic
https://connect.mayoclinic.org/discussion/mayo-breast-cancer-survivorship-clinic/
Also, Mayo Cancer Education BLOG in Connect has series video on Survivorship:
https://connect.mayoclinic.org/blog/cancer-education-center/tab/ncsd/#ch-tab-navigation
Laurie

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I’m also confused about what tests are needed & when. What is the timeline for the tests going forward? I had DCIS that was removed with the stereotactic biopsy. I had a lumpectomy where there was no cancer present in that pathology report. I chose to not do radiation or take AI’s. I was told I needed a mammogram followed 6 months later with a breast MRI due to dense breasts as well. I went for my first 6 month follow up mammogram which I thought was a regular test but on arrival I was told it was a diagnostic mammogram only checking the 1 breast that had the cancer. I was told I would need 1 diagnostic mammogram 1x per year for the next 5 years just on the right breast. I then questioned when the left breast would be checked & was told that’s done on my regular yearly mammogram which is due in July. The MRI would be 1 year in September. So far that would mean a diagnostic in April, a regular mammogram in July with the MRI in September. BUT the lady doing the mammogram said a diagnostic then the regular mammogram in July & I wouldn’t need the MRI until January, 6 months after the regular mammogram?? The MRI would then be 16 months out instead of a year so this isn’t sounding right to me. SO VERY CONFUSING! Does anyone have any info on time frames for the 3 different tests?

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I finished my treatment in August 2022. The only thing I knew was that I would be seen by all three disciplines in the first year. I asked my oncologist about survivorship in December and met with a nurse from that clinic in December to review my treatments and follow-up care. I have also been able to contact my team whenever I have a question or concern. I hope you can continue to communicate with your team.

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I remember feeling this way in 2005 when I finished a year of treatments and surgeries. There was no mention of survivorship, or what comes next. The last of my treatments was radiation 5 days a week, then nothing. I asked the doctor on my last day, “what comes next?”. She said you go live your life. I asked about what if it comes back? She explained that if it comes back in the breast they will treat it again, and if it came back somewhere else they would not be able to stop it.
😳😳 This little emoji says exactly how that felt. I did not have an appointment for follow up just that I would get a letter for a mammogram in a year since I had breast cancer I didn’t have to wait until 40.
That was the second most difficult year of my life.
I am so grateful that more cancer centers are teaching people how to navigate after cancer.
@joymccarthy @rene1636 have you looked at any of the videos or checked out the discussion posted by @roch ?

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It sounds like you need a rest and a chance to feel like you are really cured. Have you made any plans for the rest of your life that will bring you pleasure and happiness. It becomes so easy for us to get so involved in treatment that there is no other life. Do you remember what it was like to walk on the beach, or shop for a new pair of shoes, or have lunch with a very good friend ? Remember we go through this life only once (no matter how long) and we need to take advantage of every moment we are given. There is no magic door we can walk through and all of out worries are suddenly gone. You are now a BREAST CANCER SURVIVOR. There are no magic answers. Know in your heart, you have done all that you can and then live every day to the fullest. This is easy for me to say, since I am at the end of this cycle (92), but I have lived all those years that follow the Cancer Diagnosis. I was 36 when I was diagnosed.. It is never easy, but it is possible to have a happy, exciting, full life no matter how many years. Remember God is in charge, and you will not leave this life one day sooner than he decides. God bless you and keep you in his tender care.
Gina5009

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My post is mostly relevant to post surgery, and following radiation treatment. I haven’t found any instance of comments concerning mouth/gum sores, red, tender areas in mouth. I have been suffering with the insuring inflamed gums since January, 2 months past my last radiation treatment. I have seen my PC, 2 dentists, an oral surgeon MD. I spoke with the Mayo team, Radiologist and Oncologist and no one has an explanation or diagnosis.
Does anyone know what this condition may be or has anyone suffered the same? Thank you all❣️

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I only found one discussion about mouth sores here on connect.
I can hear the frustration in your words. I am sorry for that.
https://connect.mayoclinic.org/discussion/mouth-sores/
Let me make sure I understand the question. Is my assumption correct that you did not have chemo? Did you have head and neck radiation? Is it possible this is unrelated to treatments?

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l am in total agreement with you on that. You should have some information about what to do going forward, but alas, it sems there is none to be had. It appears like you have all the attention during treatment, but no 'plan' for the want of a better word going forward about what to do to keep healthy. At the moment I'm waiting on a call from my radiologist on whether I can just have the 'wait and watch' instead of the radiation, as my tumor was 'teeny-tiny' (their word) clear margins and no lymph node cancer. No word back yet although they were to call me four days ago. I think if you don't follow their 'orders' you get left behind. They most likely don't want to take a chance on telling you it would be ok in case they get sued or something. But in your case, it seems odd that you get left there all by yourself, with no aftercare at all. A short list of 'what to do'. If you're a smoker, give it up. If you're a drinker, leave the wine behind for a while. Eat healthy; plenty and I mean plenty, of Veggies and Fruit. Exercise – very important. Go easy at first, but walking is the best way to go initially. Drink lots of Water – keep very hydrated. Take whatever Meds you've been given. Also rest until you have all your energy back. Accept help from everyone until you're up and running again. And, keep on this portal so you can pick up tips about recovering from 'your' particular cancer. That's helpful! God Bless you and Keep you Well.

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@rene1636

I’m also confused about what tests are needed & when. What is the timeline for the tests going forward? I had DCIS that was removed with the stereotactic biopsy. I had a lumpectomy where there was no cancer present in that pathology report. I chose to not do radiation or take AI’s. I was told I needed a mammogram followed 6 months later with a breast MRI due to dense breasts as well. I went for my first 6 month follow up mammogram which I thought was a regular test but on arrival I was told it was a diagnostic mammogram only checking the 1 breast that had the cancer. I was told I would need 1 diagnostic mammogram 1x per year for the next 5 years just on the right breast. I then questioned when the left breast would be checked & was told that’s done on my regular yearly mammogram which is due in July. The MRI would be 1 year in September. So far that would mean a diagnostic in April, a regular mammogram in July with the MRI in September. BUT the lady doing the mammogram said a diagnostic then the regular mammogram in July & I wouldn’t need the MRI until January, 6 months after the regular mammogram?? The MRI would then be 16 months out instead of a year so this isn’t sounding right to me. SO VERY CONFUSING! Does anyone have any info on time frames for the 3 different tests?

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That is confusing. I'm thinking the only difference between a regular and diagnostic mammogram is one is routine on the breast that never had issues and the diagnostic is just a followup on the one that had issues. Sounds like the same test, but more of an insurance coverage issue. I only had cancer in one breast, yet for 10 years since my mastectomy I have always had ultrasounds and MRIs on both sides of my chest at the same time. Don't hesitate to ask your team for more of an explanation. Best of luck to you.

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