Radiation recovery
Comments
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Welcome Cactus and Frill,
Frill - i didn't have chemo but I did have 33 Rads treatments. I was blessed because I only had a bit of burning and fatigue halfway through the treatments. The thing is there are risks with any treatment. I never thought twice about having radiation. I know scarring can occur and lung damage that doesn't show up for years after treatment. It's your call just as the decision to take hormones or not. I do take Tamoxifen and have for almost 5 years. That ends at the end of this month.
There are side effects of course but for me they have been manageable. Others have had debilitating SEs. Again, your call.
It's your life and your body.
Good luck!
Diane0 -
welcome, cactus and frill,
I saw my medical oncologist Wednsday all went well but when I saw my GYN this past Wednsday he ran FSH TSH and estradiol.My estradiol /estrogen. Came back very high over 600.His nurse called right when they revived it and I asked for them to send it to my medical oncologist
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It's been overfour months since radiation for me. Does anyone still have swelling and redness (like sunburn) after that amount of time
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Yikes Josie what does that mean exactly?
marijen - I was one of the lucky ones with Rads. Very little burning and swelling. I know women who still had those issues months after their last treatments. The only thing I had and probably always will have is numbness.
Diane
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Hello! I have been stalking your board for a bit now but didn't want to post until I finished rads...guess what? I finished rads! Wednesday last week was my last day! I am already feeling so much better (energy wise) and skin is healing faster than I anticipated! I also noticed a huge difference in energy level between whole breast and boosters. I really think it takes a lot out of you, too bad they couldn't just do the boosters for the whole treatment with less radiation! Next step: I start tamoxifen next Wednesday.
I am looking forward to getting to know you all! Have a wonderful Sunday!
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Thanks edwards, I was fine the first month after radiation except for very tired. My problems didn't start until the month after - SUDDEN swelling, redness, infection, pain, peau 'd orange, pain. Several diagnoses and treatments followed. dx'd with Cellulitis, radiation mastitis, angioedema from radiation. And now I fear the scarring will become permanent radiation fibrosis. And for treatment: antibiotics, radiation, LE pt, breast elevation, breast biopsy for IBC (benign, Thank God). Two pt's didn't know the heck what to do about me and gave up quite quickly. Now they want to send me to a third outside my teaching hospital on the cutting edge of technology. In the meantime, I exercise everyday, have used every cream and home remedy I can think of such as epson salts (that eleviated a little pain). Found out calendula is an astrigent, as is lemon, and apple cidar vinegar. Compression is iffy, I have read so much - it can constrict the lymph from flowing and only one pt, no doctor suggested that. What I know for sure is BS, RO, MO, primary, haven't a clue about the complexities of LE. Although my MO came in late and I wouldn't expect my primary to know. I don't get the feeling that in the three months I'm dealing with this anyone of them went home and read up on the subject.... although I know my MO truly wants to help.
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Welcome Carlsoda - congrats on finishing Rads. Hope the SEs from Tamoxifen aren't too severe. Mine haven't been. I'm done with Tamoxifen the end of this month. 5 year milestone!
Diane
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Diane, wow, really? Done with Tamox....long haul, right? I don't finish with Femara until next year as I started it after rads. NP is saying there are advantages to continue. Not sure about that.
For some reason, I am less calm about my mammo at the end of this month. Never happened before. But I have been jittery lately anyway.Carlsoda, glad you checked in here. It is so good to have others with whom to share questions and milestones.
Congrats on finishing rads. Your diagnosis is similar to mine; however, I do not know what tubular is.
I hope you will keep checking in as you start your next phase of treatment and recovery.My last week before back to work....it's been a beautiful summer, but I've missed my famiy.
I have had a lot of anxiety, sleepless nights, and a few weird symptoms. I need to get a physical for routine assessment. I do not see the MO anymore, and visits with NP and blood work will be once a year. To me, that is not enough to ease my mind. I will call for an appointment with family practice today.0 -
My mammo and checkup is this Friday....nervous for some reason but not sure why. Usually I am a little nervous but this time more so. Anyway, there is not a good reason, just that I am. LOL
Hopefully ALL of us have uneventful mammos!
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It is hard to believe it's been almost 5 years Joan. My ONC doesn't want me to take it 10 years. She said I've dodged the SEs like a blood clot(had one when I was 16) and my tumor, grade, and Onco score are early stage and low so she doesn't see the need. I am ambivalent about taking it longer. It's kind of an extra insurance policy to me.
Good news from friend who had BC metasize. She had a bone scan that came out fine and her numbers from the tumor markers are down considerably so the chemo pill is working. Thank God.
It will be fine April. I'm always a basket case before my mammo. It's my nature to worry so I will always be a nervous wreck.
Fall can't come soon enough. Sick of hot weather.
Diane
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Had to post this pic. DS's GFF's oldest daughter is 6. First day of school in the first grade. She was nervous and excited. New school. I remember my youngest son's first day. He didn't want to go. She did.
Diane
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Diane,
Cute picture glad she's excited for school.That doesn't last long enjoy while u can.
I'm not sure what the high estrogen levels mean but it puts me at higher risk for more reoccurrence .Frankly it kind of scares the heck out of me.I haven't heard from oncologist yet I know she's had to read those results.Im just looking for her opinion
April,
Good luck with the mammogram.Try not to worry.Im the same way especially after finding out about my high estrogen levels.
Joan, glad u had a good summer.I hope you get to the bottom of the anxiety before school starts again
Welcome to all the new members.sorry for not addressing everyone individually
Josi
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Thanks Josie. She is a cutie. I hope you hear from your Oncologist soon. Waiting isso unnerving. Let us know when you hear and try not to worry.
Diane
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Don't worry Josie....I know that is easier said than done. We are in your pocket chica.
Joan, in your pocket too lady. We will all be just fine! xo
Diane, how cute is that kid! She already started school? Wow, that is really early. Our kids don't start until the end of August around here.
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It is too early April. When I was in school a zillion years ago in Louisiana we didn't start until after Labor Day but we didn't get Fall or Spring breaks either. 
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My precious darlings! Little girl is GFF's 3 year old!
Diane
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Darling pictures Diane,thanks for sharing.
How old are those babies now?
Diane and April thanks for the kind words.I will keep you posted.Mammogram is 9:30am .
My daughter is probably getting the house across the street.Shes turning in her credit app tommorow .Im praying she will.
Josie
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Growing up in NYC, we always started school the day after Labor Day (except for one year when we had a hurricane) so that families could return from their “last hurrah” vacations between the end of day camp and the beginning of school. We did have 10 days off around Christmas/New Year’s, a week off around Easter, plus the autumn High Holy Days (everyone, not just we Jews, because the schools were closed) and the first two days of Passover if they didn’t happen during Easter break. Snow days were built in, but we usually didn’t take them most years. And we went straight through until the last possible day in June. (No A/C back then, either). Starting in high school, we had a weeklong “inter-session” break in Feb. between fall & spring semesters.
As to post-radiation breast swelling, the first 3 wks of Nov. I had 16 hypofractionated treatments to the tumor-bed area--dose-dense and daily. My tumor cavity seroma began swelling on day 2. By the end of the three weeks +1 day, I had a huge blob jutting out from the side of it, and within a week the tissue surrounding the seroma had fibrosed. My LE therapist had me wear a Solaris Swell Spot pad inside a sleep bra at night, for about four months. My dermatologist, whom I’d seen for an unrelated issue, noted the fibrosis and the residual flushed appearance of the upper front of the breast; she prescribed a triamcinolone ointment (gooey) BID for 3 wks on, 2 wks off--3 cycles. I now use the ointment a couple of times a week, only once those days. The seroma has shrunken, the fibrosis softened and the flushing nearly gone. My breasts are finally equal in size again (the cancer breast was originally the smaller one) and my cleavage is skewed only by my congenital scoliosis.
In your pocket for everyone who has a mammo or scan coming up. Josie, hope that estrogen level is an outlier. My RO bid me adieu after my last session. From hereon in, I will be seeing my BS annually, her NP at the 6-mo. mark in between; every 4-6 mos. for my MO, who will co-ordinate my general care with my PCP.
When I had my first TKR (R), my PCL was removed in the process. I didn’t have an ACL on my L. I lost it after a complete rupture in 1994. Because I had a non-refundable trip to China coming up in 6 weeks, that wouldn’t have been enough time to rehab after an open reconstruction. Since I’m neither a dancer nor an athlete, we elected to just clean up the mess and rehab the heck out of my quads & hamstrings. I was able to take my trip, using a cane to walk. The lack of a L ACL meant I had to have a TKR, not a PKR. (At 61, I was too old for a unicompartmental anyway).
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Thanks Josie - they will be a "1" September 18. Jackson - chunky one - is such a little tank but James even though he is smaller is more aggressive. I don't think their Mom is prepared for boys. She already stresses about their bumps and bruises. Having had 5 brothers and 4 sons it comes with the territory!
We had an interesting discussion at our BC meeting last night. My 5 years is up this month so my ONC told me I don't have to keep seeing her. The ladies in my group all said they still see their's and several of them are years beyond 5 years. I don't have tumor marker tests - do you guys have them? My ONC doesn't believe in them because she said too many false positives. All our appointments entail is checking to see how Tamoxifen affects me and my vitals. They were all surprised. I have IDC, Stage 1b, Grade 1 and an Oncotype score of 11. She said my type of BC doesn't warrant tumor marker tests anyway. I'll see her August 22 supposedly for my last time. I'm going to talk to her again about why all these women have to keep seeing their oncologists for 10 years. I know we all have different BC DX but it is a bit of a concern.
So hope your DD gets the house Josie. How great would that be to be so close.
Praying all goes well with tests and mammos for everyone having them.
Friend is moving to South Carolina so several of us are doing happy hour tonight with her!
Diane0 -
Chi Sandy,sorry to hear about your ACL"ouch".I hope you get some relief soon.
Diane,
I hope so too.
BtW,good news my mammogram was normal.Yay!!!!!Im so relieved.
Had a sad afternoon when I came home to a dead cat.My DD brought the dogs over without my knowledge while I was gone and could of easily made sure the cats were safe before bringing her dogs in.Apparently she thought they were upstairs since Andys bedroom door was closed.I was so upset and mad at her irresponsibility .That poor kitty cat.I don't blame the dogs because they are dogs and they have that hunting instinctI made her boyfriend dig a hole in the backyard and bury her.
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Good news on the mammo but so sorry about your cat Josie. God that's horrible. Poor baby. It is their instinct. My dog gives chase to a stray in our cove sometimes but hasn't caught him thankfully.
Diane
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(((Josie))) First, very happy about your mammo results. Mine is tomorrow! So sorry about your kitty being hurt by your DD's pups.
My golden retrievers adored our cats so that is such a foreign concept to me. In fact when Jake our dog died, Whiskers, who was his best friend (inseparable, even slept together) was so forlorn, he did not eat for a few days and he just kept walking around the house meowing and crying.
But, I did see other dogs that HATED cats and thought of them as prey. I guess I was lucky. Jake was 4 when we brought cats into the mix. Reilly was 2 and he was amused by them but not as inclined to "love them" like Jake did.
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So happy that blasted seroma is finally dissipating, Sandy. It's been a long, annoying trek which, I'm happy to now say, absolutely horrified me from the getgo. I'm delighted you metioned this.
Josie, I'm really happy about your mammo. Way to go! The dogs, on the other hand, are a problem. Didn't they "grow up" in your house, with your cats? All one happy family? I'm really surprised they forgot so quickly that your poor kitty was a family member. Such a shame, not only for the cat, but the dogs as well, as they are now damaged and can't be trusted.
Edwards, I "expect" to see my onc twice annually for ten years. We discuss my anti-hormonal and its associated issues (i.e. I whine and bitch; the listens). Every visit, I ask, "Are you going to do a breast exam?" He then nods agreement. He also listens to my lungs, thumps or pokes various places, and asks if I have any pain anywhere. He appears happy to take whatever time I need to address all my issues (getting less as time goes on). Afterwards, I feel the visit was valuable. I'm already anxiously awaiting my September visit.
Frankly, if my experience approximates the way you would like your onc visits to go, and they do not, and if you leave feeling frustrated, perhaps the solution would be to change docs. Perhaps your current onc can recommend someone with a greater focus on those five or more years out.
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April,Diane,Brookside thanks for the nice comments.
Brookside, the dogs are very good hunters and although Tank had always seen the cats as a puppy,as he got older he would be a little tougher so for the safety of the cats I would put them upstairs when the dogs were over.As far as the puppy he was probably following suit.My dog however probably wasn't able to save the cat.That was her buddy.She would nibble her fur and groom her and when the cat had enough she would bite or swat at her.
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Brookside - all the ladies in my group see their oncologists 1x a year. No one is 10 years out yet. We all have different oncologists but most of us go to the West Clinic which is THE cancer clinic in town. It is the best.
It's not that I necessarily want to continue seeing her because if all she is going to do is monitor the effects of Tamoxifen there is no need since my days taking it are numbered too.
Of all the women in my group my BC is the least aggressive, lowest stage and grade and I have the lowest Oncotype score plus all but one lady and I have had chemo so its really not a level playing field. One lady suggested there is a protocol at West Clinic as in everyone's testing is the same. Frankly that's ridiculous. Of course we aren't all the same. It's not one size fits all.
My oncologist believes tumor marker tests should be taken if there are symptoms warranting them or you have Stage IV BC.
I should be relieved she doesn't need to continue on and I really am. She told me I can see her 1x a year - I just don't have to.
My Ob-Gyn does a blood profile every year so I'm covered on a battery of tests. Maybe the 5 year milestone comes with a bit of fear and relief.
Good luck on your mammo April.
Diane0 -
Josie, so sorry about the poor kitty. Some dog breeds (esp. terriers and hounds) have strong prey drives and are not a good match for smaller non-canine pets. Trouble is that so many of us want to do the right thing and adopt a rescue dog, but can’t be assured of its heritage--sometimes a dog passed off as “mostly retriever” or “mostly shepherd” may have some prey-drive breed in its lineage that the shelter didn’t know about.
Diane, forgot to mention how beautiful Bob Cat is--he looks almost like our late great Matthew (who had some charcoal markings, and lived to be 19).
My PCP does an annual metabolic panel and CBC, and biennial lipid profile. My MO does an annual metabolic panel, but since I had one a couple of days earlier by my PCP to rule out various ominous causes for my foot & leg edema, she basically just scanned the lab report into my chart. She doesn’t do tumor markers in non-metastatic patients, nor does she test hormone levels. As for DexaScans, Medicare will pay for only one every 2 yrs and I had my baseline in Nov. My MO prefers to see her patients every 6 mos. for at least 5 yrs, and annually if on 10 yrs. of endocrine therapy.
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Hi ladies, I would like to ask. Once I'm finished with treatment, the two doctors I need to see are my OC and OB/GYN right? I don't need to see the PCP if my GYN cover all the tests.
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That's what I do Houston. My OB/Gyn does a blood profile so blood work is covered. I don't have a PCP at present anyway. Looking for an internist.Your ONC will be the primary go-to person.
ChiSandy - my Oncologist is one of the best in town. I trust her judgment. We have several ladies in our BC group at church who are Stage III and one who has been Stage IV for 10 years! Most of them are taking hormones for 10 years. I'm not.
Diane
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Josie: I am so very, very sorry about your kitty. I have 4 rescue dogs in bed with me right now and I just can only imagine what you're going through. Huge, huge, huge hugs for you, with all my heart.
Houston2016: Are you actually in Houston? If you're at MDA, lemme know what rads are like there. As for your question, right now, I always start with MO, gync onc, with questions and ask them if I should just see my regular doctor. After treatment, --- wait a second, you're saying there is an "after treatment" time????? (lol, sort of) I'd ask one of the nurses and see what they want to be seen for. I imagine - and other ladies probably know the real answer - a lot of it has to do with how far it is from this mysterious after treatment time.
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