Survivorship/Care after treatment

Posted by joymccarthy @joymccarthy, Apr 14, 2023

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.

@elliej

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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There is a condition called "Thrush" which is usually caused by to much treatment for Respiratory Illness. It can cause the type of sore mouth you are describing. You might ask your doctor about this. I have Trigeminal Neuralgia and my gums and teeth can become painful enough I cannot eat. One of the things that help me during these times, is Ambesol (baby teething medication). I rub it on the gums, and the analgesic solves the problem long enough for me to be able to eat. You might ask your doctor about this also.
Gina509

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@semurrey

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

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Cancer brings a lot of anxiety, peace of mind is one of the things I miss most from pre-cancer days. 😂
I do try to laugh about this, but the truth is, it can be hard at times.
That first year was the hardest, I understand that it can take a while to know if the treatment worked. Also the treatments continue to work for some weeks to months after they end. I had to ask a second doctor to get that little tidbit of information.
The other side of the equation is I have this much time before I have to think about it again. I can eat what I want, go ride my horse, do all the things I couldn’t do during chemo. One Mayo doctor told my husband “if you always wanted to go to Tahiti, now is the time”.
Do you have things you would like to do that can help you enjoy the time you get between appointments?

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@gina5009

There is a condition called "Thrush" which is usually caused by to much treatment for Respiratory Illness. It can cause the type of sore mouth you are describing. You might ask your doctor about this. I have Trigeminal Neuralgia and my gums and teeth can become painful enough I cannot eat. One of the things that help me during these times, is Ambesol (baby teething medication). I rub it on the gums, and the analgesic solves the problem long enough for me to be able to eat. You might ask your doctor about this also.
Gina509

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I asked my Doctors if it could be Thrush and the response was no, it didn’t present as such. I am using Magic Mouthwash now, an RX of Lidocaine, Maalox, Benadryl. The docs suggested it may be an anti immune response to stress. I have also broken out in Ezcema, which is new too. Maybe stress is a factor, but I am only treating the symptoms, not the actual cause.
Thank you for your suggestion. ❣️

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@gina5009

There is a condition called "Thrush" which is usually caused by to much treatment for Respiratory Illness. It can cause the type of sore mouth you are describing. You might ask your doctor about this. I have Trigeminal Neuralgia and my gums and teeth can become painful enough I cannot eat. One of the things that help me during these times, is Ambesol (baby teething medication). I rub it on the gums, and the analgesic solves the problem long enough for me to be able to eat. You might ask your doctor about this also.
Gina509

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I think I have been very fortunate. I never had set appointments to see doctors. They just figured if I found something unusal I would call and make an appointment. You have to remember, there were no mamograms, or MRI'S, etc when I had my cancer. Just surgery, and if you had positive lymph nodes radiation. That was it. I found my original cancer myself while taking a bath. Just felt a lump. Consequently, I did not hear the negative comments, and just assummed they were done with me. Very different from today.

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@elliej

I asked my Doctors if it could be Thrush and the response was no, it didn’t present as such. I am using Magic Mouthwash now, an RX of Lidocaine, Maalox, Benadryl. The docs suggested it may be an anti immune response to stress. I have also broken out in Ezcema, which is new too. Maybe stress is a factor, but I am only treating the symptoms, not the actual cause.
Thank you for your suggestion. ❣️

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I am so sorry you are having such a trial. It does sound like stress, but that is difficult to know. Have you tried just giving yourself permission to do whatever is pleasant and fun. Personally, I like to put on a pair of head phones and just listen to someone read me a book. Generally, I fall asleep and have to start over again, but that is O.K. I have time. Do you like swimming, there is nothing more relaxing or water walking. It is great for mainting muscle strength too. An aqua areobics class can be great to. You meet some really great people, who can bring joy into your life, and we can use all the joy we can get. I did the aqua areobics for20 years and have never been sorry.

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@elliej

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 dont have any personal knowledge in this and just completed my radiation. However I just walked with a friend who just completed chemo, awaiting mastectomy, and said for Chemo she was instructed to bring ice water and cold hand mits to protect against mouth sores and something that can also happen to hands (neuropathy?) while undergoing chemo. I had not heard of that, and from your message above I dont think youve had chemo. Is it possibly unrelated? Ughhh...feel for you. We have to be ready to field anything coming our way. I got shingles after week 1 of radiation. Taken by surprise by that one.

Take care

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@lhwoz

I dont have any personal knowledge in this and just completed my radiation. However I just walked with a friend who just completed chemo, awaiting mastectomy, and said for Chemo she was instructed to bring ice water and cold hand mits to protect against mouth sores and something that can also happen to hands (neuropathy?) while undergoing chemo. I had not heard of that, and from your message above I dont think youve had chemo. Is it possibly unrelated? Ughhh...feel for you. We have to be ready to field anything coming our way. I got shingles after week 1 of radiation. Taken by surprise by that one.

Take care

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I’m so sorry you had shingles. I wish the “surprises” were the wonderful ones! No chemo for me, but still trying to discover this mouth issue. I’m seeing another doctor today. He has seen this before, and is prescribing Tetracycline. Praying the antibiotic will help me get back to my, lol, new normal, whatever that is! Blessings and thank you for your response❣️

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@lhwoz

I dont have any personal knowledge in this and just completed my radiation. However I just walked with a friend who just completed chemo, awaiting mastectomy, and said for Chemo she was instructed to bring ice water and cold hand mits to protect against mouth sores and something that can also happen to hands (neuropathy?) while undergoing chemo. I had not heard of that, and from your message above I dont think youve had chemo. Is it possibly unrelated? Ughhh...feel for you. We have to be ready to field anything coming our way. I got shingles after week 1 of radiation. Taken by surprise by that one.

Take care

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SO SORRY ABOUT YOUR SHINGLES. I HAD THEM SOME TIME AGO AND I CAN STILL FEEL THE PAIN. I JUST READ THAT MEDICARE IS NOW PAYING FOR THE SHOTS. YOU MIGHT WANT TO GIVE THEM SOME THOUGHT.
GINA5009

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@gina5009

SO SORRY ABOUT YOUR SHINGLES. I HAD THEM SOME TIME AGO AND I CAN STILL FEEL THE PAIN. I JUST READ THAT MEDICARE IS NOW PAYING FOR THE SHOTS. YOU MIGHT WANT TO GIVE THEM SOME THOUGHT.
GINA5009

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Thankfully I had my shingles 2 vaccines last year before all of this so while it was painful, it eas more just supremely irritated for about a week. I believe a very mild case!! grateful for that at least

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@gina5009

There is a condition called "Thrush" which is usually caused by to much treatment for Respiratory Illness. It can cause the type of sore mouth you are describing. You might ask your doctor about this. I have Trigeminal Neuralgia and my gums and teeth can become painful enough I cannot eat. One of the things that help me during these times, is Ambesol (baby teething medication). I rub it on the gums, and the analgesic solves the problem long enough for me to be able to eat. You might ask your doctor about this also.
Gina509

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I have been fighting Mast Cell and I learned this from a support group. Hydrogen Peroxide. We get many odd things all the time : like I grow lipoma's , fatty tumors under my skin, etc. When getting ready in the morning, take a small cap full from the bottle of hydrogen peroxide and put in your mouth , swish around in your mouth while getting a shower. then spit out. I have been buying a small spray bottle of H.P from Dollar Tree. I use 4 or 5 sprays in my mouth to swish around. I go to my dentist every 6mo. for a check up. They asked what I was doing bec i hardly had any plague. So it not only cleans the mouth , but it stops plague. I do this once daily. I have had friends who have gotten sore gums, etc and they use the h.p. I have terrible reactions from all forms of soy. one of these is boil like growths and thin skin that will bleed. I use H.P and it always clears it up fast. Also if you get cold sores. I use a cotton pad or ball and put h.p. on and wipe my mouth where i feel the outbreak, and it never happens. I am not a dr, but have found many cures for these odd things. You might try the hydrogen peroxide. I also have found baking soda also helps with flushing , plosion ivy, etc.

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