Radiation recovery
Comments
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Kate, I'm sorry that you didn't get all the news you wanted. I know that your doctors will work with you to build the very best treatment plan, and please remember that you are not a statistic. Hugs.
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(((Kate)))
Oh my, so sorry that report was disappointing
But the chemo is kicking ### and your MO say body is responding
This c roller coaster sucks
Put on your princess warrior coat curl up on your chaise sip some wine and feel our love (((squeeze))) surrounding you:)))
Cake crumbs and all!
Tomorrow is another day... one day at a time ...all together!
(((Hugs)))
Cindy0 -
Josie, Sab, Runfree, and Cindy thanks for the support.
My MO emailed me and said he discussed surgery with my urologist and they think a partial cystectomy( removing the tumor and part of the bladder not the whole bladder is the way to go. I do not agree after reading about it on the net. I asked my MO for two more urologists to get second and third opinions. I am more upset that they did not recommend neo bladder surgery than I am about what my MO said earlier today. I am a fighter, and I am thinking positive, and I think I can outlive his predictions. The net says all kind of negative things about a partial cystectomy like recurrence of the tumor is 40-60% likely. that is much less pratcied now than it was in the past, and with invasive tumors its inferior to a radical cystectomy. I emailed my MO and told him I didn't trust a partial cystectomy, and that I don't want one. He said I needed to calm down and that he and my urologist only have my benefit in mind. I do trust my MO, but I now don't trust my urologist. When I discussed surgery with him last Friday he never even mentioned a partial cystectomy. He discussed surgery removing my bladder and getting an outside bag or doing neo bladder surgery. When he discussed neo bladder surgery he said I would have to wear diapers. This is not what the net says it says that with practice and muscle exercises I could have bladder control. A big red light of non trust popped in my head when he mentioned diapers. I thought he either did not want to do this type of surgery or he did not have experience with it. He is 70 years old and the light of non trust suggested to me that he is from the old school regarding outside bags. Now I will have to wait for second opinions etc. I pretty much have my mind up about a partial cystectomy. I don't want one. There would have to be a lot of convincing for me to get one. It is major surgery too and it requires a one week hospital stay too. All of this waiting sucks because now I am totally worked up about not wanting a partial cystectomy
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Kate, I think getting a second and if needed a third urology opinion is completely reasonable. Did you see anything online showing better odds for neobladder surgery? And did the urologist (via the MO) explain why he didn't favor a neobladder for you? I think your point about his age, and your big red light of non trust (what an excellent image!), are totally important. If I'd listened to my first MO, I would have had chemo. Instead, I had an instinct that he was not up to date in his thinking, and I've now had three other, younger, sharper doctors confirm that. The waiting for a settled decision is very hard but your optimism and fighting spirit are great assets. If two more urologists--younger, more believable, who say things that take into account what else you've learned--agree that a partial cystectomy is the way to go, at least you'd know why. And they might not agree. You've got some time anyway, I think, because no surgery would happen until you are done with your current chemo plan, right?
I hope you are able to sleep tonight. (It's 4:30 here and I just woke up. Hoping to go back to sleep soon.) As Cindy says, tomorrow is another day.
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Kate, so sorry the news wasn’t what you hoped. So glad it wasn’t what you might have feared. That chemo is kicking butt (and so are you!). Yes, it’s time for a couple of other opinions and, although I know you’re not the greatest fan of teaching hospitals, that’s where the newest, the brightest, the best technology, and the best brains and hands gather. Those are the guys you need now.
Also, now that you know exactly where you are and are not, and have done the web research, I’ll bet you anything that, whether you know it or not, you are ready to actually talk face to face with your new urologists about their recommendations for your specific little body as opposed to the generalized info you can pull off the web. After all, princess warrior that you are, and after all that you’ve faced, not only over the past several months, but throughout your life, what could they possibly have to say that you can’t handle? Moreover, the right and best surgical decision is one you and your surgeon have to come to together, and the surgeon needs to feel your trust, as you need to feel his or her trust in your outcome. Trust is built on honest communication, no? Go kick butt, Kate. Go find the best and brightest. Go get those nasty uglies.
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Kate - Just popped in to see what was going on with you. I am very upset with all this outcome but very happy you are going to get another opinion. Sometimes older doctors are stuck in the past. There have to be more updated procedures they can do. Especially since your tumors are shrinking. That is happy dance news!!! Is there a possibility you could go to MD Anderson in Houston for the second opinion? I am not sure if you want to travel but they are the #1 center in the US. There are others I am sure but a friends mom went down there for a second and they had a totally different treatment plan and worked with her local Dr's. If not them than maybe Cancer Centers of America? Just a thought.
You hang in there and keep fighting. That cancer does not know who it is trying to mess with. For sure.
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Hi Katehudson2-
I am pretty new to this thread and started writing because a few weeks after rads ended (May 14th) I had such extreme fatigue that I got very concerned, though I seem to be getting more energy back lately.
I noticed your post and am wondering if you have new breast cancer or if it is a separate cancer altogether. I hope I am not being too nosy but I was reading past posts and didn't see what was going on with you. I want to wish you all the best in your current treatment!!! (I suppose I could have private messaged youbut I don't know how).
runfree- I have found that my appetite has increased and I have gained about 20lbs.
I went out and bought new shorts yesterday much to my dismay. also my memory is not as sharp and it wasn't great to begin with,lol. not sure if it's the aromasin or rads or both. no hot flashes, but as I just read from your post, hopefully, less SE don't mean less effective prevention. I've been taking 1200mg of calcium and extra vit.D3 for years for osteo and osteopenia from Chron's disease and a parathyriod that was enlarged and removed. I haven't found it to be a problem so far. I have a huge pill box cuz I take several meds for various things. couldn't do without it!
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Beachwalker my bladder cancer is a separate cancer that has nothing to do with breast cancer. Runfree, Brookside, Bunkie and Beachwalker thank you for the support. I will have to wait for many answers to questions and second opinions before I decide if I want surgery, and if I do which kind. I will also have to wait for answers to questions before I decide if I will do 4 or 6 months of chemo. My Mo is associated with UCLA, so he will give me a 2nd opinion doctor from UCLA which is a teaching hospital. The urologist I have now is with St. Johns, and that is so much more convenient for me. I do chemo at UCLA and I much prefer St. Johns hospital to UCLA, but it it is ok to get a second opinion from UCLA.
Today I am going out to lunch with a friend and tomorrow night I am going to manhattan beach happy hours with my doctor friend. I so much need an escape. Trying to get a zillion answers to questions via email is stressful, and Monday I have my 6 hour chemo. It is the start of my 4th month of chemo
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Kate, I'm so glad you went out with your friend today and will go out tomorrow too. Might as well enjoy the heck out of all the good times, and you are so great about that. I'm sure it's hard to face your long chemo again on Monday when you're already down. But you've got new confirmation that it's shrinking your uninvited cells. I'm glad your second opinion will be from a teaching hospital. My bad MO was at a teaching hospital also, just old and not keeping up with new developments. I think he's more of a lab guy. However, it was a weird fluke (snowstorm, so schedule went haywire) that I got him, and I bet your MO will be sure to set you up with someone really smart.
Beachwalker, gaining 20 lbs was my biggest fear about Tamoxifen. Oh sure, others might say their top concern is blood clots or cataracts or uterine cancer, and of course I'm afraid of those, but those side effects seem to be pretty rare, whereas gaining weight is something I'm all too good at. Could your parathyroid removal have something to do with your weight gain too? I'm a little fuzzy on the parathyroid's role. I'm glad to hear you are getting your energy back! Thanks to everyone for the advice about dressing in layers so I can strip down when I get a hot flash, maybe better called a warm flash so far. I think I will carry a lovely Victorian fan too, since the heat seems most noticeable in my face. And a hanky.
I have a new symptom today, from (axillary) rads or surgery: a tender spot on my back, along the side by my BC breast maybe 4 inches away. It's not a large spot, maybe the size of my hand, and it's not terribly tender. I noticed a tug when I reached for something in a high cupboard, and then I felt the area and found it was sore to the touch too. Small potatoes, but I'll keep an eye on it. Gah.
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Run free....stretch that area out....apparently reaching for high cabinets will do the stretch for you. Muscles etc. have a nasty tendency to shrink after rads and they need stretching. Do it 2x a day. That will take care of the tender feeling too.... Can you tell I have my own area like that? I no longer have to stretch daily, but even after 2 years I do still need to remember to do it occasionally.
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Thanks, good point Sew. I did go over this with my PT but I have probably not been doing it enough. It also crossed my mind that this could just be a muscle strain, very ordinary, not BC-related. If it's gone in two days, that'll be the story. But meanwhile I will get back to my stretching.
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kate- how did you discover the bladder cancer? i am only now beginning to realize how many questions we have regarding this stuff and how much answers differ. I am only getting a mamo next year for follow-up and I was told an MRI, especially for ILC. Maybe it's all insurance reasons. I will be checking on this further but am already so tired of it all.
run- I really need to have more self control when it comes to food. I am exercising too but I am finding that I don't have the energy to exercise as much as before treatments. the willpower to eat only healthy foods and smaller portions is so challenging right nowl
I don't know much about the parthyriod either (I should) but I lost 45lbs. 2 years ago, 5 years after it was removed. It took a lot of work to do that! I don't think it has anything to do with my weight. it leached calcium from my bones so i have ostepenia and osteoporosis already and now on aromasin I hope I will have some bone mass left when I'm done!
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Beachwalker because I was a former smoker my MO ordered a ct scan and multiple lung nodules showed up. Then he ordered a pet scan and a bladder tumor showed up
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Where is everyone? Nobody posted yesterday at all. I had fun in Manhattan Beach last night. We are going to go to happy hour's there again August 16. I am feeling good and going to chill today and tomorrow. Unfortunately I have my 6 hour chemo Monday, and will be sick next Wed. Thurs. and Friday. I have a couple of major decisions coming up. One is whether I want to do 4 or 6 months of chemo. The other is whether I want to have surgery. I need a number of questions answered first like what happens to the nodules after chemo is stopped and if I have a partial cysectomy will the tumor come back. I don't think my MO wants to answer all of the questions I have through email. I may have to wait till my next appointment with him Aug. 9.
Cindy, my doctor friend told me she has a patient whose husband had a neo bladder done at USC. I am wondering if your husband's surgeon was Dr. Skinner, and how many years ago he had the surgery. I think Dr. Skinner left USC in 2010.
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Kate, you're so right, it has been very quiet! I've noticed that this message board has quieted way down the last few weekends. Funny that people have more time for posting during the week! I'm so glad to hear you had a great time at the happy hour. I love to think of you having fun, feeling good, and relaxing. Your long chemo this week will not be fun, but you know the drill now. Does that make it better or worse? I can see it going either way. Will this be your third long chemo or your fourth?
Those are very hard decisions, and deciding what to do might involve hearing upsetting things about the possible options. I wish you good news and courage and clear problem-solving. And patience, if you do have to wait until August 9. Meanwhile I hope this weekend is as pleasant as it sounds and as pleasant as you deserve and need--which is to say, very pleasant!
I had odd urinary tract pains yesterday, and I got myself convinced last night that I had a UTI, and that the pain on my side was actually in my kidney. In view of your cancer, Kate, and my mom's milder bladder cancer 15 years ago, this freaks me out a bit. I went to Dr. Google and found out that people do get UTIs with Tamoxifen and also with menopause. I was going to call my PCP this morning to see if I could get into their morning hours (nothing but ER here from Saturday at noon to Monday morning), but I woke up feeling better. And I thought about how the pain on my side is really on my rib cage, not below it. So if it's not muscular, maybe it's a bone pain, which I gather people also get with Tamox. Perhaps I'll email my new MO. I've never emailed a doctor before but she prides herself on being available, and I think her card had an email address on it. Meanwhile it is finally beautiful here, warm but not steamy. Tomorrow we are going to hang out with some friends who have a lake house on an island in Lake Winnepesaukee. They will come get us in their boat and take us there, and we will probably cruise around the lake and maybe paddle around in their kayaks. I think it will be fun (unless this really is a UTI and it flares up!). The next best thing to having a lake house is having friends with a lake house.
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Kate I am just now catching up. I have been busy and distracted a bit but think of you so often. I am really sorry you did not get the news you wanted. Cancer is so complex and not every treatment works for every person. You certainly have the final say on which course of treatment you decide to pursue. I am glad you are wanting second, and even third opinions. You deserve to have peace of mind with the choices you and your team make. I know there are many difficult choices ahead for you. I am sorry that next week will be a rough one with the long chemo. Please know you are in my thoughts and I wish the very best for you! Keep doing your homework Kate and the answers will come to you. You deserve to find some peace. Also have fun in the process. It sounds like you had some fun plans with friends and that is always such a nice distraction. Hugs lady!
Beachwalker, welcome to the thread. It is so nice to be on this side of rads. Fatigue is so normal but you will notice it diminishing in time. I know many struggle with weight and trying to get back into a more normal routine and back to exercising. It is a process. Cancer is a big deal, so don't be too hard on yourself for gaining some weight. In time you will find exercising much easier. One day at a time!
RunFree I hope you are feeling better. The pain or tender spot in your back is likely nothing to even worry about. I often think of how many aches and pains we all have endured in years past. Now each new bump or tender spot takes on a sinister tone. LOL!
I hope everyone is enjoying their weekend. We went out and picked five tomatos from one plant, small but they were so amazing. Bigger ones are in the works. We are going to have BLT's by the end of next week. A big indulgence, but so good with our beautiful fresh tomatoes.
Take care everyone! I'll try to post more often, I miss being in touch!
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Janis and Runfree thanks so much for your support. Runfree Monday will be my 4th long chemo treatment. I hope you are feeling better
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Thanks Kate! I thought it was your 4th long chemo. So if you go for 4 total, you'll be done after this one--and it will be hard to push yourself to do more of them when you could be done, I would think. I like the way Janis put it when she said that the answers will come as you go through the process of more opinions, research, and pondering. At least I hope you find a path that feels right.
Janis, your point about BLTs is reminding me that we are going away just as our tomatoes will be getting ripe, in another week. Oh well. Thanks for the encouragement about the tender spot on my back. It is weird and it does feel sinister. That kind of gets my darker thoughts going again, but I've mostly been able to brush them away. I'll just observe it for a couple more days, and if it isn't gone by early this coming week, I'll contact my MO, I guess.
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Ladies,
I am just coming up next week on my 2nd AC for Stage IIIa BC. Outside of my regular job, I teach an intensive 4 hour a day weeklong course at a law school every January. It is an exhausting endeavor but normally rewarding. But life has changed.
I am supposed to have 6 1/2 weeks of 5-days of radiation after 4 dose dense Taxol. I calculate Rads will end either the Friday before my class or 2 wks prior. I am 58. :-) can you give me a reality check? Do I contact the Dean and tell him just can't do this year? I don't want to wait too late to cancel the course. What is most important to me is surfing BC and getting through my treatments with as much grace as possible. Every else pales in importance.
Thanks for your hard-earned experience. We are all different but likely one can draw some conclusions. Sheila0 -
thanks justmejanis for the welcome. It's nice to know we are not alone while traveling this long and sometimes scary road. I still can't believe that I had bc and went through all the tests, surgeries, rads. It is a big deal but i try not to think about it. Just wish I had more willpower to avoid the goodies.
All the best to you Kate. I am trying to decide on one "big" decision, which I started a new post for, (types and timing of follow-up after treatment for ILC). So, I can't imagine how hard it must be for you with different things going on. It sounds like you have a great attitude and are doing what you need to. As for me, I am wrestling with what to have for follow-up. My surgeon originally said I would have an MRI, now she says mamo is enough with clinical exams every 3 months. my ILC couldn't be found on mamo or ultrsound. I agreed to it but now am mad at myself for it. Saw my Mo yesterday and told this all to her and she typed it to my surgeon who now must think I am nuts! I wonder if she will call me back!!!!
After biking a lot for that past few days I was so wiped today that I didn't do anything but a little housework. It was gorgeous here but I just stayed on the porch and enjoyed the hummingbirds at my feeder, not even a walk.
Sheila- i did fine during rad treatment but a couple of weeks later the fatigue hit me. I was very glad not to be working and I had only 3 weeks of it. However I know women who have worked during and after so It's so hard to say. hopefully someone else can be more helpful than I can.
runfree- sounds like you have great day planned tomorrow! Have fun! My late husband and I used to take our kids to Loon Mt. every summer for a week. It's so pretty there and we all have such nice memories of the beauty and fun we had; the flume, story land, water whiz, etc.
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Sheila I didn't have chemo so I'm not confident of my ability to predict your energy level. I will say that there seems to be a fairly wide range of reactions to rads. I do want to say welcome and wish you well. I'm sure another gal with similar experience will come along with better input. Meanwhile, exercise, eat protein, hydrate and rest.
Runfree what fun. I love lakes even more than ocean...kayaked one today! Do you wear a sleeve? If so don't forget it for paddling!
Janis we stopped our garden a couple years ago when dh went back to work and I miss those fresh, fresh vegetables, especially tomatoes.
Kate, thinking of you a lot. I hope you have a smooth treatment.
Sew do you find that the tightness varies a lot? I wish I could figure out what tightens everything up.
I'm tired from my road warrior week taking Dd younger to therapeutic camp. Three weeks to go.dd elder continues run of bad luck. Backpack stolen right from the studio at school while she was in adjoining room.0 -
RunFree, what a bummer about that sore spot! Could it be from overstretching? I had something similar pop up, quit the stretches for a couple of days, and it resolved very nicely. Meanwhile, I know you'll have an awesome vacation. I'm sure you can find a neighbor who will be happy to gobble up your lovely tomatoes while you're away. Depending on the size of your garden, maybe it will take more than one neighbor?
Kate, so glad you have all those questions lined up for your docs as you move into phase two. Phase one, of course, was finding out if the chemo helps, and yipee ki yay, it sure as heck does, so that was amazingly good news. The big fear, of course, was that it might not work, which, of course, would have taken away your option of continuing that particular drug. I know more of the same is not what you've been hoping for, but it's wonderful to know that it is an option, and a pretty darned good and effective option, at that. Yep. As phase one fades away, it's time to grill those docs with all the who, what, where, why, and when, as well as another zillion questions beginning, "What if. . . . "
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Welcome, Sheila. As SAB indicated, there is a huge range of post radiation effect and affect. Some patients just breeze right through, others (me, for instance) are clobbered with fatigue and a sort of PTSD. I had my RO put me on short term disability throughout rads (16 plus 4 boosts) and a month thereafter. Just last week, for the first time, I finally blasted out of what I call the post rads funk, and was able to really, really apply myself to my clients. To tell the truth, the key was that I accepted a little help--a low dose of short acting ritalin. I fought against taking a drug for a long time, but am now sorry I didn't cave in sooner.
I guess my advice is to have a nice long chat with your MO and RO about what you might or might not expect, and carefully monitor your energy level as you plow through chemo. Can you also give some thought to how you might lessen your load--teaching assistant, guest presenters, possibly a co-instructor? And don't overlook the wonders of restaurants, takeout, and delivery.
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Hi y'all
Shelia - Welcome:). Decisions so difficult:( each of our bodies so different in response to our treatment protocols. Ask...have a discussion with your BC team...find out what s reasonable to expect. I didn't have chemo...rads were very doable for me (59) ... but I did not work and my whole focus was caring well for myself...I deeply admire each warrior that works, cares for family, and presses on through tx! Ask and then as others suggested determine your options...you know your body best...hydrate, eat protein, walk, rest, BREATHE!
Trust your gut feeling on how best to proceed...now is the time to be 1st in your life!
RunFree - summertime fun and memory making:) yes, those good lake/boat friends:) hope you feel better...expect the best!
SAB - iron chef without a backyard herb garden...DH better get to work. Poor dde needs to offer up a gimme so the string of ad luck ends...ah the days behind the wheel ha ha...hope ddy tips well with XOs mom:). I wanna yak...still watching the trunk...swelling tender:( adding compression top to exercise clothes...
There's no way I can catch up with everyone so here's a big {{{squeeze}}} to y'all ...Janis, Josie, Sew, Brookside, Bunkie, Beachwalker, Joan, Susan, April, Kate, and ...:)
Time to get ready for another pocket party for Kate...cleaning up the cake crumbs and wine bottles, and party hats. Filling up the bubble wands and princess warrior sparke dust...tiara is dazzling))
(((Hugs)))
Cindy0 -
Good Morning Kate!
So glad you've been having a fun weekend...out with friends yippee!
Soak up more fun today...retail therapy, donut shop, ocean breeze:) you've got this brave warrior princess! Rah!
Decisions, tests, waits, decisions ... Breathe! You've got an excellent team that will guide you through this...make your list of questions, ask, ask, ask, and follow your heart. You know what is best for you:)
Dr M Desai is hubby's urologist at USC...you can check out their team on the USC Keck website. He came highly recommended...I like his bedside manner and his availability at all times.
Neobladder is a long surgery 12-15 hours...TURBs are 1 hour, but so much easier.
After all info is presented you will make the right choice for you.
Now, kick back enjoy today! Medi/pedi...what color...opi cabana party for me lol:)))
We're getting ready for your pocket party...any requests?
(((Hugs)))
Cindy0 -
Hello all, and welcome Sheila.
We have been w/o internet for a few days.Finally I called ATT and They ended up sending a service guy out to bring a new modem and he decided to replace the cable going into the house from the pole.What a chore that ended up being for him.We have vines and overgrowth on the wires in the very back of the yard.
We had the best little backyard campfire last night.
My 10yr old DD had her friend over for a sleepover.We had been working in the backyard a little so I came up with the campfire idea.
We discovered one thing last night about old dead Christmas trees.They make great firewood.Those girls had the best time add little pieces of it to keep the campfire going.And it made one less eye sore to see when coming into the driveway.DH was supposed to deal with that tree months ago instead it still was sitting in front of the garage.0 -
Josie - what fun a camp out with bonfire
yummy s'more You hit that one big with dd!
Way to go mom!0 -
Kate - Ugh another long treatment. I know you hate them. My heart goes out to you but from what I am seeing you are doing great. Stronger than I would be. I am glad you are getting that second or third opinion and that you feel comfortable with UCLA for that. I am so glad you had fun at Manhattan Beach. That was always a fun place to be. Anything that says beach works for me. They have great shopping and food. I used to love that little place called Fresh Produce. They had the cutest t shirts and shorts. I still order from them on line. We are all waiting anxiously to see where your next step takes you. I know it will be tuff but you are such a strong woman and I know you will be ok.
RunFree - I can relate to the UTIs. I always feel like I am getting one. Then I go do a urine test and they find nothing. I think I have that vaginal dryness thing that we get during menopause. It feels like a UTI or a yeast issue but it is not. I keep forgetting to get the pills GiGil mentioned. When I remember I do take my cranberry pills and they help it. I also get those lower back pains where my kidneys are sometimes and do not know if it is a stone again or something else. I get a lot of stones from my Sarcoid so I have to be careful. I miss going to the lake. When I was a kid we had a summer cottage up there. Very rustic but I loved it. My family owned a small hotel on the lake called The Royal Breeze. I saw my first water snake up there fishing in the boat with my dad. We used to go get fish at 5am in the morning and then I got stuck cleaning them with my cousin. Good memories. Hope you had a good time.
Josie - SMORES!!!! Glad ATT fixed the problem. I retired from there. They have to replace my phone lines about every two years. I have a family of squirrels that chew the lines. I feed them nuts and bread in the winter. Can not figure out why they don't get electrocuted eating the wires.
Beachwalker, Sab, Janis, RMlulu, Sew and the rest of the group...just stopping in to say hello.
Shelia welcome to the group.
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On another note it has been awhile since we heard from GiGil. I am hoping Cole's surgery went well and her dad is doing better. She has to be going through a lot with both of them. Prayers to her and her family.
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Runfree, Beach, Sab. Brookside, Cindy and Bunkie thanks for the support. Welcome Sheila I thought rads was a breeze no fatigue at all. I am now doing chemo for bladder cancer and chemo has me fatigued, but I never felt tired on rads.
I too hope all is well for gigil
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