Dis Breast Cancer Survivors Part IV - GAGWTA

[Grace&Carolinesmom]

I have a question for you guys. (It's probably been discussed somewhere on the thread, but I haven't had any luck searching.)

So...I'm at 11 years post breast cancer diagnosis and had cancer in my lymph nodes. I know there is a good chance it will come back sometime, and since it's been over 10 years, every ache and pain and cough makes me nervous.

I'm wondering what kind of follow-up care people get. Do you have regular scans of some kind? Do you just go to the doctor if anything worrisome comes up? (I did go when I had a swollen lymph node in my neck, but lots of tests later, it was nothing.)

I keep wondering if I should be doing some kind of routine screening, but don't know how to ask for it. Many thanks fin advance for any advice or experience that can be shared.

Welcome and congrats on being 11 years post diagnosis! I can't really answer your question as I am a newer face around here. I will be 2 years since breast cancer diagnosis on the 21st of this month.

Do you have regular check-ups with your oncologist? Because I was diagnosed with TNBC, I am being monitored closely for the first 5 years as that is the highest rate of reoccurance for my type. I get a mammogram every year and a breast MRI every year so that I have imaging every 6 months. I currently see my oncologist every 3 months.

 

[Pea-n-Me]

Welcome and congrats on being 11 years post diagnosis! I can't really answer your question as I am a newer face around here. I will be 2 years since breast cancer diagnosis on the 21st of this month.

Do you have regular check-ups with your oncologist? Because I was diagnosed with TNBC, I am being monitored closely for the first 5 years as that is the highest rate of reoccurance for my type. I get a mammogram every year and a breast MRI every year so that I have imaging every 6 months. I currently see my oncologist every 3 months.

I had that same type, too. Triple negative. With two positive lymph nodes.

 

[Grace&Carolinesmom]

Also joining the group - not that you all aren't wonderful people, but not a thread I wanted to

I was diagnosed with colon cancer last week. I'm feeling good about it since they took quite a bit out in open surgery a few weeks ago. Praying they got it all.

Unrelated, I have a questionable nodule on my adrenal gland. Tests have been abnormal so more tests ordered plus a CT next week. Previous CT could not tell if it was likely benign or malignant so a different type was ordered.

Praying for everyone on the thread.

Welcome! But....sad to see you on this thread instead of the usual "closed thread (winky face)."

It sounds like you are in good hands and your doctors are being efficient and thorough. Are you having any symptoms regarding the adrenal nodule or is it blood tests causing the abnormal concern or ??

Big hugs

 

[Pea-n-Me]

I had a relatively small spot on my chest that I was worried could be basal cell cancer. It was where I had radiation. But I saw my PCP today and she thinks it’s eczema, and prescribed a steroid cream. Still referred to dermatology. Has anyone else experienced anything like this post radiation?

 

[nw6675]

Welcome! But....sad to see you on this thread instead of the usual "closed thread (winky face)."

It sounds like you are in good hands and your doctors are being efficient and thorough. Are you having any symptoms regarding the adrenal nodule or is it blood tests causing the abnormal concern or ??

Big hugs

Thank you. Unfortunately symptoms. But staying positive until they tell me not to be.

 

[Grace&Carolinesmom]

I had a relatively small spot on my chest that I was worried could be basal cell cancer. It was where I had radiation. But I saw my PCP today and she thinks it’s eczema, and prescribed a steroid cream. Still referred to dermatology. Has anyone else experienced anything like this post radiation?

I have not had anything like the eczema but is that what is referred to as radiation recall? Where there is a skin reaction similar to the original reaction during radiation???

Interesting about your scar tissue causing you concern. I am having a similar concern. Ever since I had another biopsy last June (post lumpectomy), I have had more off-an-on pain and soreness in that area and I have developed lymphedema in my left chest and left arm. Now it could be due to the lymphedema but I am still paranoid. I have a mammogram coming up in a few weeks so we shall see....

 

[Grace&Carolinesmom]

Thank you. Unfortunately symptoms. But staying positive until they tell me not to be.

Staying positive is half the battle. The rest is being taken care of by your wonderful doctors.

 

[Pea-n-Me]

I have not had anything like the eczema but is that what is referred to as radiation recall? Where there is a skin reaction similar to the original reaction during radiation???

Interesting about your scar tissue causing you concern. I am having a similar concern. Ever since I had another biopsy last June (post lumpectomy), I have had more off-an-on pain and soreness in that area and I have developed lymphedema in my left chest and left arm. Now it could be due to the lymphedema but I am still paranoid. I have a mammogram coming up in a few weeks so we shall see....

I hear you. It’s a little unnerving to feel it. But a lot of different radiologists have reviewed all of my information so I am hopeful they’re right. It just sort of brings back all the worries every time you feel something unusual, right? I will look up radiation recall, thanks for that!

 

[Pea-n-Me]

For @eksmama01, I hope it’s ok.

To this day I say a lot of prayers like this. It helps me feel better when I’m worried about things.

 

[BayouQueen]

Welcome. And congratulations on your 11 yrs!

I’m at 20 yrs this yr. For many years I was getting seen by someone every three months - either PCP and oncologist (breast exams), then mammograms alternating with MRIs. We stopped doing that several years back, with my oncologist saying the thinks that my original breast cancer is unlikely to come back at this point, but that I am now at risk for another breast cancer, like everyone else. (Shoot! I thought those days were behind me! Lol.) So now I just have routine mammograms and follow up (once a yr w oncologist, sort of) and of course, if anything comes up. For the past few yrs Ive had mammograms and ultrasounds because I have some scar tissue now inside my breast and it concerns me. But they say it’s not cancer. I hope they’re right! What has your oncologist said?

Welcome and congrats on being 11 years post diagnosis! I can't really answer your question as I am a newer face around here. I will be 2 years since breast cancer diagnosis on the 21st of this month.

Do you have regular check-ups with your oncologist? Because I was diagnosed with TNBC, I am being monitored closely for the first 5 years as that is the highest rate of reoccurance for my type. I get a mammogram every year and a breast MRI every year so that I have imaging every 6 months. I currently see my oncologist every 3 months.

Thanks for the responses! I love hearing it’s a full 20 years, Pea.
I had chemo and mastectomy and for five years had very regular appointments with my oncologist and my breast surgeon, but they both released me after five years. So now I just have annual checkups like anyone else and oncologist expects me to take any concerns to my internist to sort out.

I guess it’s up to me to be proactive about having symptoms checked out. Just wondered if some people have full scans of some kind periodically. Metastasis is always a worry. And getting older, my bones are always achy anyhow, so it’s hard to sort out.

 

[Pea-n-Me]

I love hearing it’s a full 20 years, Pea.

Hard to believe it’s been that long. I know that hearing those stories were really important to me, as opposed to the “bad” ones. @Dan Murphy’s wife was quite a few years out at the time we started this thread, and she’d had something like 11 nodes positive! So that story had always made me feel better. It’s been a nice place to commiserate with other survivors.

I had chemo and mastectomy and for five years had very regular appointments with my oncologist and my breast surgeon, but they both released me after five years. So now I just have annual checkups like anyone else and oncologist expects me to take any concerns to my internist to sort out.

I guess it’s up to me to be proactive about having symptoms checked out. Just wondered if some people have full scans of some kind periodically. Metastasis is always a worry. And getting older, my bones are always achy anyhow, so it’s hard to sort out.

Hmm, idk if that’s unusual or not. I saw my surgeon and radiation oncologist for about that length of time, and they released me, too, but I still have a relationship with my oncologist. Idk if it’s because, like @Grace&Carolinesmom said above, we were TNBC? I had chemo, too.

Will other survivors here chime in with this question, please?

But yes, I think it’s always a good idea for us to be proactive for ourselves as much as we can, regardless. I suppose it’s nice knowing the oncologist is there if needed. If I do have concerns I can always call mine and she’s made room for me, which I appreciate. Even if/when I haven’t always been to see her yearly. (Thanks for the reminder, I should probably schedule something.)

 

[BayouQueen]

Hard to believe it’s been that long. I know that hearing those stories were really important to me, as opposed to the “bad” ones. @Dan Murphy’s wife was quite a few years out at the time we started this thread, and she’d had something like 11 nodes positive! So that story had always made me feel better. It’s been a nice place to commiserate with other survivors.

Hmm, idk if that’s unusual or not. I saw my surgeon and radiation oncologist for about that length of time, and they released me, too, but I still have a relationship with my oncologist. Idk if it’s because, like @Grace&Carolinesmom said above, we were TNBC? I had chemo, too.

Will other survivors here chime in with this question, please?

But yes, I think it’s always a good idea for us to be proactive for ourselves as much as we can, regardless. I suppose it’s nice knowing the oncologist is there if needed. If I do have concerns I can always call mine and she’s made room for me, which I appreciate. Even if/when I haven’t always been to see her yearly. (Thanks for the reminder, I should probably schedule something.)

I did have ER+, but probably it's more that I was at a large university cancer center and they really moved the patients in and out. Great care while it was ongoing, but they were pretty aggressive about being sure I was established with a GP or internist and that future symptoms should be evaluated by him or her.

IDK...it's just been on my mind lately because I'm at 11 years and so many charts are for 10-year survival. I'm thinking, well, what about after that! I love hearing stories like yours. The treatments really can work!

 

[Pea-n-Me]

I did have ER+, but probably it's more that I was at a large university cancer center and they really moved the patients in and out. Great care while it was ongoing, but they were pretty aggressive about being sure I was established with a GP or internist and that future symptoms should be evaluated by him or her.

IDK...it's just been on my mind lately because I'm at 11 years and so many charts are for 10-year survival. I'm thinking, well, what about after that! I love hearing stories like yours. The treatments really can work!

My treatment was in a place like that, too. I forgot to say, I still wouldn’t hesitate to call your oncologist if there are any issues, for sure.

 

[nw6675]

I'm still learning what is appropriate to post here. No hard feelings if anyone says get out if here If you know of another thread for current and/or other types of cancer, please let me know

I had about 40 staples removed on Friday. I'm itching like a freak now! I've read I could use Aquaphor and I'm taking Benadryl.

Any other suggestions? They both help, but I don't want to keep taking Benadryl if there is another remedy.

 

[BayouQueen]

I'm still learning what is appropriate to post here. No hard feelings if anyone says get out if here If you know of another thread for current and/or other types of cancer, please let me know

I had about 40 staples removed on Friday. I'm itching like a freak now! I've read I could use Aquaphor and I'm taking Benadryl.

Any other suggestions? They both help, but I don't want to keep taking Benadryl if there is another remedy.

Oh, I'm sorry to hear you're so uncomfortable. I find Benadryl difficult to take, too.
Do they allow the cortisone cream? Maybe a prescription for something to help with sleep, since your body is in turmoil? We all like to "tough things out," but this might not be the time for that. Be kind to yourself. Perhaps a call to your doctor's office is in order to let them know you're having trouble. They will want to be of help to you.

 

[Pea-n-Me]

I'm still learning what is appropriate to post here. No hard feelings if anyone says get out if here If you know of another thread for current and/or other types of cancer, please let me know

I had about 40 staples removed on Friday. I'm itching like a freak now! I've read I could use Aquaphor and I'm taking Benadryl.

Any other suggestions? They both help, but I don't want to keep taking Benadryl if there is another remedy.

You can post whatever you want! We’ve had lots of different types of questions here over the years!

I’m sorry to hear you’re uncomfortable! Forty is a lot!

I think checking in with your surgical team is a good idea. They will assure you that itching is normal, will ask directed questions to make sure nothing seems amiss with it, and will offer you some ideas for working with the itch that their team endorses. There might also be something in the mounds of paperwork they gave you.

Here is a medically reviewed general article I hope you find helpful.

https://www.healthline.com/health/itchy-stitches

For myself, I would perhaps wet it in a tub of water once or twice a day just to keep it from drying out, then dry it carefully (patting). I think the Aquaphor is fine, or Vaseline, but I wouldn’t put anything else on it unless recommended by my team. I understand what you mean about oral Benadryl, it makes your whole body feel yucky when you really just need help for the wound. Fortunately, over time, this will get better, and you will have a scar that heals properly and looks ok down the road; not wind up with a wound issue. My daughter (we’re nurses) deals with those and they can be tough.

 

[Grace&Carolinesmom]

I'm still learning what is appropriate to post here. No hard feelings if anyone says get out if here If you know of another thread for current and/or other types of cancer, please let me know

I had about 40 staples removed on Friday. I'm itching like a freak now! I've read I could use Aquaphor and I'm taking Benadryl.

Any other suggestions? They both help, but I don't want to keep taking Benadryl if there is another remedy.

Gosh, itching is the WORST!! ACK! I haven't had itching from staple removal thank goodness. My surgeon used surgical glue. BUT....I have had itching from wounds healing, adhesives, and of course, my dreaded Grover's Disease.

Some things that might help, cool/cold wet compresses can really help an immediate itch. Using some good sunflower oil while still wet from your shower and then be careful to just pat dry the water that beads up on your skin. The oil soaks into your skin and then you can put a protective layer of the Aquaphor on top of that. Believe it or not, Zyrtec during the day can help with all kinds of itching. If you are having trouble sleeping from the itching, ask your doctor for a hydroxyzine script. It's an antihistamine that really helps itching but also makes me very sleepy. My dermatologist told me I could take up to 4 zyrtec a day for itching but I found I can't take them at night because it keeps me awake. I have never actually taken the max dose and usually only took 2-3 a day during really itchy episodes and spaced them about 4-6 hours apart.

I hope you find some relief soon!

 

[nw6675]

Thanks everyone! I didn't want to to call the doc after hours on the weekend, so this was helpful. Ironically, I got NO wound care instruction paperwork at discharge so I had to call my doc after hours then to ask about the bandages! The RN was new and did not do a good job discharging me and answered my questions about wound care incorrectly at the time

I actually take hydroxyzine as a sleep/anxiety aid. But can't get a refill for a few weeks! Aargh! I'm out because I'm allowed to double up as needed so my rx doesn't usually last the full 90 days.

Thanks again

 

[Pea-n-Me]

Thanks everyone! I didn't want to to call the doc after hours on the weekend, so this was helpful. Ironically, I got NO wound care instruction paperwork at discharge so I had to call my doc after hours then to ask about the bandages! The RN was new and did not do a good job discharging me and answered my questions about wound care incorrectly at the time

I actually take hydroxyzine as a sleep/anxiety aid. But can't get a refill for a few weeks! Aargh! I'm out because I'm allowed to double up as needed so my rx doesn't usually last the full 90 days.

Thanks again

Not surprised. This is the case anlmost everywhere right now. Many senior nurses have left the insanity and have been replaced by brand new nurses, including where I work. As you’ve seen, quality of care suffers when that happens, sadly.

 

[Grace&Carolinesmom]

Thanks everyone! I didn't want to to call the doc after hours on the weekend, so this was helpful. Ironically, I got NO wound care instruction paperwork at discharge so I had to call my doc after hours then to ask about the bandages! The RN was new and did not do a good job discharging me and answered my questions about wound care incorrectly at the time

I actually take hydroxyzine as a sleep/anxiety aid. But can't get a refill for a few weeks! Aargh! I'm out because I'm allowed to double up as needed so my rx doesn't usually last the full 90 days.

Thanks again

Can't get a refill insurance-wise or doctor-wise? Hopefully your doctor could make an exception for short time use?? I found that for itching, I have to take 30-50mg of hydroxyzine. Crossing fingers you can get a refill!!!

That stinks that they dropped the ball on your discharge instructions. I really like that the hospital I go to has a day-after follow up call by a surgical RN to make sure everything is doing OK and to answer questions that pop up after discharge.