Radiation recovery
Comments
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Hi all, I just finished UMX in 10/5/16; still recovering but overall feeling better. I have been following up with PS only, the apt with BS is coming 10/20. My PS said I will be on antibiotic for whole month. Any idea when I should start radiation or hormone treatment? Should I call the OC to schedule seeing her? Why don't the doctors not following up with patient care? Do I have to initiate all my future apt for checking on my BC and maintenance? I'm asking that but I'm a very proactive person about my health. I feel some doctor or nurses don't care to call about your results, or follow up, lacking responsibility. Thanks for any inputs or suggestions.
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Hi all, I just finished UMX in 10/5/16; still recovering but overall feeling better. I have been following up with PS only, the apt with BS is coming 10/20. My PS said I will be on antibiotic for whole month. Any idea when I should start radiation or hormone treatment? Should I call the OC to schedule seeing her? Why don't the doctors not following up with patient care? Do I have to initiate all my future apt for checking on my BC and maintenance? I'm asking that but I'm a very proactive person about my health. I feel some doctor or nurses don't care to call about your results, or follow up, lacking responsibility. Thanks for any inputs or suggestions.
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Houston, I never had to follow up to schedule any of my treatment. This was all orchestrated by my team. I would definitely complain and if you really have no confidence, change doctors. Hugs and welcome and hope that all goes well.
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I know it seems like everything takes forever. If you already know which onc you want, then I'd go ahead and call to schedule. If I remember correctly, it was not until my one-month follow-up with the BS that my onc and RO meetings were scheduled (both in the same room, one after the other). The BS, after assessing my healing, pronounced me ready to meet with them.
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Houston, my experience was much like April's and Brookside's. The surgeon had to release me for rads. but because of prior radiation I met with the RO doctor after my surgery but before being released i order to settle all my questions. In fact, I might have met with him before surgery even since we were figuring out my course of treatment. I didn't get my MO until rads were finished. I saw my surgeon at the one year mark after being released by him, and had only a 1 month and 3 month follow up with the RO after rads were finished. Of course, I could have called any of them at any time with problems or questions. I'm now at 5 years (well a few weeks shy of that mark actually) and have been alternating my visits with both my MO and my cancer survivalist doctor for the past year. I only had a lumpectomy (two surgeries) and rads, no chemo and no mastectomy which might well change the follow up procedures. Good luck to you, you've been thru quite a bit already so stay strong and you will conquer the rest of it too. Remember to exercise as you can, stay hydrated and eat lots of protein....that's the mantra around here and helps you get thru the rigors of rads.
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It is interesting. I, like Houston, have to schedule my visits to my doctors. I went to see the BS who performed my mastectomy and the day after I went to see the MO. They are not located at the same center. The BS also sent me to an MO within the same center as he. She asked for some new tests and she has not care to give me an appointment to see her and discuss the tests. Recently after the surgery (two weeks after) BS sent me to the RO. The RO saw me on July 12 and only heard of her on late September (21) when she gave the list of tx and the price tag. I told the secretary to drop me from her list. Some of you have a well coordinated team that joins and discuss the treatments. Not all of us are such fortunate. I really say that the two physicians I care to go back are the BS, which is also a SO, and the PS. The other three non cancer physicians that I can consult very frequently are the family physician, the nephrologist, and the orthopedic surgeon. I also schedule my visits to them.
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MILESTONE....... hip hip hurrah, I get to stop the arimidex. I'm less than 2 weeks from my full 5 years taking the drug but my Cancer Survivalist Dr. wants me to quit for 2 months. Then we will see how I feel, and consider doing the new tumor marker test. She says you can't reasonably decide if you want to continue the drug for 5 more years unless you know what it's like being off it. If it makes a huge difference for me (cures all the bone pains, stiffness and muscle wasting going on) then I might well decide I'm not going back on it no matter what the test says, at which point we wouldn't do the testing. She says that there is a small percentage of women who had a low onco-type score who have a high recurrence of cancer between 5 and 10 years out and for them taking the arimidex can keep that from happening. So....... now I get to see what it's like without this drug. She does say it will take about 2 weeks before I really notice any change that may happen. I'm looking forward to this .......
Josie...that little girl is just precious.
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Sew, congrats.I hope that there will be a smooth transition for you.
Thanks for the nice comments about my granddaughter I agree she is precious.But of course I might be slightly Biased being her Grandma.
I wonder if that Tamoxifen has started taking a toll on my body.It has been almost 31/2 years but lately I've been so stiff when getting up after sitting for a while.My hip ,my knee my shoulder.Its weird because it's all on one side.But it makes me feel like I'm 90 yrs old instead of 47.I know that's not young but It's too young to be feeling like that.
I finally got a job.Had the interview last Thursday and although it's not full time.Only 25 hours I will try it and see how it goes.My first day is Friday
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So happy you've found a job, Josie. Is it still in the same field, or are you trying something totally new?
Meanwhile, I hope you're getting lots of grandma time with the little cutie.
Congratulations, Sew. Five years on an AI must feel like forever. What an achievement--sticking to the nasty drug all this while. I'm not sure where my five years hits exactly--my onc plans to add up all my drug holidays and add them back on at the end. Considering how miserable the drug made me feel, there were several vacations of varying times. One lovely one (not onc approved) lasted a month, so I guess I need to look "forward" to at least two months, maybe three, of extra sentence.
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Josie congrats on the job! Your granddaughter is a sweetie.
Sew Doing the happy dance for you!!!
Welcome to our newcomers.
Saying HI to everyone.
I'm still out of commission here. Have my follow-up next Tues. This not being able to do things sucks. I'm getting old & not healing as fast as I used to. Such is life. Take care all. Fran
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Brookside, did those "vacations" make a difference in the SE's.
Josie, congrats on the job. That was fast. I'm also stiffening up within about 10 minutes of sitting,or standing...very strange.
Fran, it almost sounds as though your cure was worse than the bite as they say...hope you're better soon. Just in time to hunker down for the winter
There must be others of us getting off the drug about now...I know Janis was a month ahead of me, so she might be off, probably Joan and SAB too. Can't remember about Cindy and Gigil, but they must not be far behind. We've all come a long way I must say..
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Sew,Fran and Brookside thanks for the congrats. I hope it works out I've never worked for a pyschiatrist before.Its actually right down the hall from my own OBGYN.I guess I'll be bumping into him once in a while on the elevator.The location is 16 miles from him but I guess some people drive a lot further
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Josie - she is such a cutie! Congrats on the new job.
Sew - yea no Arimidex. I hope it's permanent. My ONC weaned me off Tamoxifen. She advised not going cold turkey so the first month after my 5 years it was once a week and then every other week this month then I'm done. She said I will be surprised how much better I will feel.
So far I don't have as many leg cramps as I used to. We have come a long way!
Fran - feel better soon
Houston - I didn't have to schedule any of my appointments either. My team did that just like April's did.
My twin grandsons are walking. Getting my track shoes ready!
Diane0 -
Thanks Dian
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What a precious little girl, Josie!
I was lucky to have a highly coordinated care team. All are part of the same hospital system, NorthShore (orthopedists, dermatologist and GYN at Skokie; BS, MO, RO, and LE doc at Evanston and its Kellogg Cancer Center). Only my primary is at a different system’s (Presence) hospital—and he refers all his patients who need specialists to NorthShore or Northwestern Medicine docs. At my pre-op teaching session, my BS’ NP scheduled me for both the BS followup and initial MO appt. just a week post-op. My MO set up my genetic counseling and RO consult. When I felt cording after rads, I found that the top LE specialist in the country is at Evanston.
I do have to make my own appointments now, and maddeningly, by phone rather than online through my patient portal; but they’re pretty good about sending me reminders as to what to schedule and on what timetable.
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Yes, Sew, the vacations made a big difference in side effects. Two weeks is just enough time for "normal" to creep back in. The one-month timeout was absolute heaven! My onc was very clear that he never wants any of his patients to be off an anti-hormonal for more than two weeks, but, heck. He did switch me to tamoxifen after that hiatus, so at least I am on something, and, with the daily addition of 1,000 mg of fish oil and a generic aleve, I'm pretty joint issue free.
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Josie, what a gorgeous child! Enjoy being a grandma and congrats on the new job and best of luck!
Sew, I am so envious of you being done with the evil AI. I have taken vacations (my MO had me take 3 months off in between switching to Femara from Aromasin because I was in such bad shape I cried like a baby in her office and she saw that I needed a long break) and I do feel a bit better when I stop but not completely myself.
I finally know WHY I don't feel well and why I am feeling so much worse than most people on these drugs. I have an issue with my parathyroid (a benign tumor is the likely culprit) and so until I have it taken care of, I will continue to feel like crap. My calcium has been up and down for the last two years and finally it stayed up and has gotten higher (they were monitoring it at my MO's and my PCP's office) so they did a PTH test (which they should have done from the get go but whatever) and it was pretty high. If it stays high in 3 months, I will have a scan and surgery to remove the likely benign tumor that is causing me to have all of the symptoms. If you are curious about Parathyroid, you can read about the symptoms (many of which mimic those suffered by us taking these anti-homonals) here
I am hoping to get my life back at some point. The pain is pretty bad as is the brain fog and underlying feeling of gloom and doom. I am tired of feeling so lousy so when I found out what was going on with me, I felt relief even if it means surgery.
Hope all of you are well! xo
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April,thanks.
I'm so glad they figured out what was wrong April.Good luck on your surgery.I hope you find some relief soo
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Bummer April. It's pretty bad when you opt for surgery to get relief. I was blessed not to have many SEs with Arimidex or Tamoxifen except the joint pain.
Josie - how is DD handling motherhood?
Got some distressing news from one of the ladies in our BC group at church. Her sister's cancer came back after 13 years. Devastating news. I told my ONC once we are branded with the C word we will always be looking over our shoulders. You would think 13 years would be more than long enough to feel positive. Praying for her and the family.
Can't wait for Fall weather. Tired of pinching my mums and watering the pansies.
Hope all our MIA ladies are k and wish they would check in.
Diane
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April, that's a really bad state of affairs. Do you think radiation caused it? Why suffer for three months more? Something is very wrong. I would try to get a scan now. My TSH has gone up since radiation. Endocrinologist thinks it's no big deal but my primary does. She wants to check it again in a month. Great link, thank you.
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Hi all,
Josie, what a beautiful bundle of sweetness little Maisie is! I pray that God blesses her little life and gives her parents the means and wisdom to care for her.
I am glad to hear you have a job. I wish you luck.
Did you ever get to Branson for your 25th? Happy Anniversary! Big milestone.Houston, I am not sure I remember, but will you have your reconstruction before radiation? I thought that is how it goes.
I had a team in Sloan Kettering satellite medical facility about 45 minutes from my home. The BS followed me through the healing process. I had the Onco type test then saw the MO for the first time. My score was about 13, but my MO told me it was a medium score and that it is unclear if I would benefit from chemo; so she made me decide. So, I spent two stressful weeks researching and getting other opinions by phone . I called her to tell her my decision to not have chemo. She prescribed Arimidex. By this time, I was more than six weeks post lumpectomy. An appointment was made with the Radiation Oncology group. She mentioned that I was starting late so they got me right in for setup. My surgery was 8/29 and I started rads on 11/28. I had to suspend the AI drug until after rads due to SEs. So I actually started over in February 2012 with Femara.
In general my appointments were made as I exited each appointment. But I did ask questions about the time line and took responsibility to put myself where I was supposed to be.
So, I am five years out from surgery and I remain cancer free. But my AI drug won't be up for several months. I have taken vacations off the drug and have not noticed any improvement. Some MOs are recommending continuation of the drug for 10 years. I hurt! Knees are stiff and painful. But nothing stops me from working and traveling etc. etc.
Sew, congrats on your 5 years and graduation from the AI drugs!! I hope you are continuing to do well.
April, so sorry to hear about your parathyroid. My dad had that....the glands are close to the surface, if I remember correctly. I do not remember him having any trouble recovering. I do hope it does the trick.
Fran, I hope you are recovered and feeling better. I know 3 people with stones right now and each had to wait before the procedure was done. I did not know it would be painful after the procedure. My friend cleans my house and has been out for two weeks waiting for stones to be resolved.Diane, you made me laugh! The twins must be so adorable! Enjoy the exercise!
Gotta get some sleep....Cubs just won. I am happy for them....
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Josie, best wishes for your first day at the new job. Hope this one is just the right fit.
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Joan - my Oncotype score was 11. Since when was 13 considered a medium score? My ONC emphatically said no chemo when my score came back. My tumor was small and non-aggressive -stage 1a, Grade 1. I realize every case is different and it's not one size, fits all but I thought medium or intermediate started in 20s range.
No worries now you have passed the 5 year milestone!
Have a good weekend everyone!
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Diane my DD is doing very well with motherhood.Shes a natural and is nursing Maisie which she is doing a tremendous job at.Thanks for asking.
Joan thank you, and yes we did get to go to Branson but had the trip cut short because DD had to be induced but we got
Almost 3 days there.
Sandy, thanks
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Quiet here....
Diane, you are right and I forgot to mention that my score of 13 is NOT considered a medium score for most MOs. I spent such anxious energy trying to make the right choice. I called two other doctors and got their phone opinion. The last one said she would not recommend chemo for her patient with a score of 13. I was really annoyed that my MO put that decision out there for me with no guidance from her.
As you say, it is good so far.Cooler weather has arrived, and I have pushed the heat up for the first time. At work I dress the same for summer and winter (layers and long sleeves). So I hardly notice the change -- except the sky and trees are beautiful. I don't like when the leaves fall and trees are bare. But winter has its own special beauty.
Have a good night, and a great rest of the week!
Joan
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My Grandaughter at her 2nd Birthday party we had on Sunday. She received lots of toys as gifts but she was not interested. What did she enjoy getting? SHOES! This is a girly girl for sure. LOL...she was a riot. She threw the toys aside and said -try shoes? I try shoes. Then she proceeded to pull the paper out of them that they put inside and try them on. She got a pair of boots for the winter and those were her favorites because they had a zipper on the side. She had a "Minnie Mouse" themed party complete with a Minnie Mouse cake her Mom baked. Here she is with her "Minnie Ears" and my her Dad's sunglasses!
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She is too cute April. I love she loves Minnie Mouse. Isn't that funny with all the toys she wants shoes. The twins got a lot of toys too but wanted to play with the boxes the toys came in. Go figure.
Good Joan. I tried not to freak out about what my score might be but my BS said it was more about my small tumor and that it was non-aggressive. Still who wouldn't stress over a high score? Idk why our doctors seem to dodge advising us what to do although mine sure did. We rely on their expertise.
Good for your DD Josie. I breast fed too and loved it. Plus it's good for the baby.
My friend and I have been babysitting the twins fairly regularly lately since DS's GFF got a FT job. Good for them financially but gotta admit we are exhausted. We also babysit her 3 year old daughter.
Monday we had a disaster. They have had a problem with wasps outside the twins bedroom so they have moved them into their bedroom. We went upstairs to get clothes to change them and my friend got stung. Beyond painful. I've been stung before and it hurts like the hell. We immediately went downstairs and closed the door. My DH had been there the day before to seal off the window but apparently they are in the walls. Thank God the babies weren't stung.
Now my DS is seeing an attorney to break the lease. He has made multiple calls to the resident manager about the problem. I saw a swarm of them just outside the window. Ugh. Needless to say they can't use that bedroom which is outrageous considering they are paying for it. My DH called the RM and let them have it. Apartments are not maintained but this is a scary health hazard. I hope they can move.
We are babysitting this afternoon for a few hours and staying away from the upstairs.
Going to check out designer shops in the outlet mall tomorrow with a friend. Not a designer person but love the outlet stores.
I'm so sick of 80 degree weather. It's supposed to be 80 for Halloween. Ugh.
Mowed the lawn yesterday. Gonna be the last time.
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Isn't there some agency that will--for free--demand they remove the hazard or let them out of their lease?
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Brookside - my son met with a lawyer this morning. He is sending the landlord a letter that states he has to comply with their demand to get rid of the wasps or they are breaking their lease. That will mean major structural work since my DH believes they have set up shop in the walls. Ugh.
I hope they don't comply so they can move. They have had other issues but this is the worst.
My DS has so much stress right now. Along with this problem he is competing for a manager's position at work. Praying he gets it.
Thanks.
Diane
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