Diagnosed/treated 2018 -- Sharing our "what's next"
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Hi Josie & flowergal,
I'm having the yearly breast MRI only a few months early to get the MRI and mammogram tests back on schedule of 6 months apart. Had to delay both due to fractured shoulders last year and ended up with MRI and mammogram in the same month. I'm BRAC2 so insurance pays for yearly MRI's.
I forget the name of the type of MRI picture they need to take to see through a lot of scar tissue/denseness from radiation, etc., Anyways it's scary especially since I thought we were having an earthquake. I'm going to talk to the technicians about this before going in the machine.I need padding along my arms as I don't want bruises.They really should advise patients what to expect. All of the other MRI's I've had (back, neck, etc.,) the machine didn't shake. I'll come back and let everyone know how it goes.
It's great to hear from both of you also and thanks for the good wishes.
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Veeder, thinking of you and fingers crossed that the MRI goes better than last to.e!
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Hi Veeder,
Glad to hear you haven't had anther medical issue as you have had MORE than your share! Good luck with the test.
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Thanks Josie O, flowergal, and Beaverntx,
I made it through the MRI this morning. The technician said that the type of MRI scan is called diffusion MRI and it is more powerful so can see through dense tissues. It was only for the past picture. I explained to the technician that last time he gave me this without any warning about the shaking. Today he actually called out how long each scan would be in advance. It does help since it seems like i'm in that machine in pain forever. Drinking lots of water this afternoon and evening to flush out the Gadolinium contrast.
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Veeder,
VERY glad to hear from you and to know that this MRI was more thoughtfully managed. Proud of you for speaking up for yourself. Hoping that this is your last procedure for a long time. Rest and relax as much as you can.
Thinking of you
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Veeder, good to learn the MRI went better than before. Lesson learned, at least for me, is to speak up about concerns--which, of course, I knew but I don't always think to do!
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Thanks Beaverntx,
I got already got the results by email--no evidence of malignancy in either breast! Luckily a request by mammography dept. to have an RN to do IV placement was included in the report. Another issue I've had is that with so many IV's needed for scans over the past 3 years with melanoma and breast cancer, my arm is just wasted and the techs can't get the needles in without many attempts. Only one arm can have needles. I've been working with the dept. manager who arranged for me to go to the main hospital and get an RN to do an IV, since outpatient doesn't provide RN's. That worked until the policy was changed (due to cost, of course) a few months ago. It's time to speak up again about this. PET/Ct (for melanoma follow up) coming up soon so need to get this resolved before then.
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Veeder,
Glad to hear MRI went well. I really hope and pray you will get some relief from all your medical issues.They make mine look very miniscule by comparison and I try to not complain about all the little aches and pains!
Hope your weather is a little cooler than ours. 97 today with heat index 115 . No outdoor work for me today !
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Thanks flowergal. Were at the beginning of a heat wave, today 91, then 98 for a few days, hot!
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Veeder,
DOUBLE YAY to no malignancy! Totally AWESOME news!
agree with your thoughtful approach to IV placement. You are smart to again be proactive and speak up for yourself. Have to agree with Flowergal-when I see all that you continue to manage, I could not bring myself to complain about anything.
A last comment about weather. I was anticipating some heavy rain last night, but the storm split-part went north of us and part went just south of us, leaving us bone dry. But a bit of cooler air for the next couple of days before warmth returns. So at least i’ll be comfortable standing outside watering plants..
Stay cool and comfortable, everyone.
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Hi Josie,
Thanks for your comments. Met with MO today and explained the history of my problems with IV's. She will contact the Dept. Head in Mammography/Radiology to get an on call RN available for me (and other patients) who are known to have difficulty with getting IV's. I'm glad to hear she will advocate for me so I can just wait to hear what the resolution is.
Also, to my surprise the MO said that the 4 months on Tamoxifen last year (before stopping for hysterectomy surgery) counts along with the 6 months I've completed this year. It seems like it would be better if it had been continuous but if that counts, I'm good with that.
Yeah, always managing a lot. Everyone's support really helps.
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Hi all,
Just wanted to share a sigh of relief after my 11/2 year mammo. All clear but when they did the right side (yearly) they said they needed to do ultrasound as well and I immediately had PTSD and panicked, but all was OK and my BP went from 179/80 to 135 /70 ! However, here's fun fact about complications of BC surgery- axillary cording. I noticed some soreness in my axilla recently and felt a tight ,thin ropelike cord in the area up to my upper arm. I figured that's what it was and the surgeon comfirmed it .It usually occurs a few weeks after surgery but the literature mentions it can happen months later. I have full range on motion so I'm not really concerned and I still do my rotator cuff exercises so now they "kill 3 birds with 1 stone" - lymphedema, rotator cuff and cording. I am really not complaining to you , just providing info. It's hot here so I do my walk early morning and the weeds have one the battle in the garden.
Vidal, hope your wife has or will have a successful surgery and uneventful, rapid recovery.
Veeder, glad you are tolerating the tamoxifen.
Stay cool everyone and we'll soon be complaining about the cold!
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Just an FYI on the cording--I had it crop up a couple of times, months and even a year after surgery. It seemed to happen when I'd increased my weightlifting. I called my BS's office about it the first time and they said I could get a referral for PT or just wait it out. It always resolved on its own.
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Thanks Ingerp,
I have read that is usually goes away eventually, but it is interesting that yours started after increased exercise. I noticed mine shortly after trying 3 pound hand weights in stead of 2 and initially thought the soreness was just overworking those arm muscles. So, I will avoid weights for a while and just live with flabby arms. LOL
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Joining the chorus on the cording. Mine also did not appear until over a year post surgery and radiation. Light massage helps it relax a bit and looking forward to it deciding to go away!
Veeder, good to hear someone is running interference for you on the IV issue.
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Ditto on the cording. Light massage with a mix of castor oil and lavender oil really help release it a bit.
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Flowergal,
A YAY for you also on a clear mammogram!
Sorry to hear about the cording, but good for you that you approach it with exercise and a positive attitude.
Sorry as well to see so many of us chiming in with cording experience. I haven’t had that happen to me-yet. But I am cautious when I lift too many weights, and if my axcilla feels “tight” I skip the next day and just do lower body weights. Because I did have lymph node involvement I can get a little apprehensive, but know if I have to I can see what my surgeon thinks.
Continued wishes for good health for all of you dear friends.Enjoy these remaining days of summer.
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HI All,
So cording can show up after a year, yikes. What exactly does it mean? I'm guessing it's in arm pit? It's good to hear what the interventions are to treat it.
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Veeder 14, cording is the common name of "axillary web syndrome," which is medical-speak for a side effect of breast and/or lymph node surgery that isn't understood very well. It is thought to be some sort of scarring or inflammation involving the lymph system and the connective tissue around it. Usually you can see "cords" in your armpit, sometimes extending down your arm, and it may be painful or difficult to extend your arm. I noticed the cords a few weeks after my lumpectomy, and I got some massage for it and did some stretching exercises. It disappeared after a few weeks, and I haven't seen it since, although I do notice that I still get a "tight" feeling on that side after extra-vigorous exercise involving that arm.
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Veeder--it really does feel like a cord kind of in your armpit. It always made me feel kind of yalsey if I accidentally touched it in the shower, so I ignored it and tried to avoid that area and at some point it just disappeared.
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Thanks for the explanation about cording so I can be aware. My complications post surgery are the arm pit seromas, which were drained multiple times. Now have permanent lumps there of hardened lymph fluid causing some pain. Will have another ultrasound of the area as follow up.
Another subject. I got the shingles vaccine injection #1 the other day. Wow, this is causing severe side effects.today is day #3. I have a fever, flu like, and a red area, rash , hot to the touch, where it was given in my arm plus the soreness. The rash kind of reminds me of when I had cellulitis. Anyone have this vaccination and bad side effects ?
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Hi Veeder,
I have not had the shingles shot but did have shingles about 2 years ago and I think the disease is a lot worse than the side effects of the shot but Maybe you should check with your Md or pharmacist to make sure what you are having are short term and expected side effects.
I wonder if any Pt might help loosen the hardened tissue .I know when I first had the Le therapy, the therapist did a lot of massage to the hardened areas of my breast to break up the sclerotic areas.
Rah,-Thanks for the tips about massage. I wonder if something less slippery like aquaphor or vaseline would do the same thing. I will try this to see if it softens the area, although they are really not very bothersome and I want to keep it that way!
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Veeder, I got the shingles vaccination last year. After the first one, my arm was a little sore. After the second one, I ached all over, like the flu. I took Advil and kept myself hydrated, and it went away in a couple of days.
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Hi flowergal & Green Harbor,
It's good to hear this goes away in a couple of days. The red swollen area on my arm is about 5" X 6" so a large area. I called my doctor today and he said as long as I don't have red streaks in the red area (which would mean an infection) or my fever gets higher then it's probably in the range of normal side effects. Just have to wait it out. Have to agree, getting shingles sounds worse than this vaccination.
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Re something to use when massaging cording: my doc suggested cocoa butter. Use a little bit and it "soaks in" quickly and does not leave you sticky.
Re shingles vaccine: I've had both of the "new" vaccine injections after having the "old" one and having shingles 5 years later. Definitely do not want them again!! Had a minor reaction to the first injection this time. With the second one my arm was sorer and the day after the injection was a do nothing day. DH reacted about the same to both injections. I' ve wondered if my having had shingles led to a milder reaction to the vaccine.
Veeder, take it easy. Do OTC nsaids help?
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HI Beaverntx
I’m not worried about the pain so much but that my arm has a red rash that looks similar to when I had cellulitis. its warm to the touch. It’s a large area and expanding. I took a picture and will send to my doctor. I had injectable antiinflamatory yesterday on my usual schedule for back, neck, and shoulder pain
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Flowergal - my oncological massage therapist suggested the castor oil because it has natural anti imflammatory properties. I added the lavender oil because it soothes me and now this massage has become a bedtime ritual so I am relaxed. Hope the self massage helps. I found it very helpful to have someone show me exactly where/how I should attack my scar tissue.
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Veeder, any better today?
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Thanks for asking. Yes, the rash didn't expand overnight and it looks like it's fading, less hot. Whew! Trying to avoid the 4 hour round trip back to the hospital.
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