Can we have a forum for "older" people with bc?
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Carole....glad you are starting to feel an upswing with your meds How wonderful to that you get to share with your Mom. I was able to "help" my Mom and it turned out to be one of the most cherished parts of my life so far.
Hope you all had a fantastic day. See you in the morning.
Hugs, Jackie
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Karra, I also had mammosite radiation, I would recommend it to anyone who is a canidate. I had problems with my BS and will not go back to him for anything. Once the mammosite was implanted and the Radiologist took over everything went smooth. Mine was 10 minutes each twice a day for 5 days. I was fatigued, but that went away fairly soon after it was over. I have to travel 324 miles round trip to Odessa, TX for my treatments so the Hope house put us up in a Hotel and that worked out great. Good luck
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Thanks ladies for the mammosite tips. It sounds like the way to go for radiation, if I'm a candidate. Now I only have to convince my BS.
Off to see my grandbaby today...she's so precious.
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Morning gals....Those of us who were lucky enough to be able to have the MammoSite Device made the Radiation treatments very easy. Yes, I got tired after that week, but all you have to do is take a nap whenever you want to.
I think you could ask around to see what Surgeons DO use the Device...Or ask why your Surgeon doesn't want to? It would just make a difference of 5 more weeks..... And a lot less complicated than the traditional radiation treatments.
Maybe you wouldn't even BE a candidate for it, depending on the size of your tumor, or where it is..... But it's really worth looking into.
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My BS said he would "consider" it but wasn't a fan because it sometimes causes problems like infections, etc...he went on for about a minute. Translated to me that means he doesn't do that many...I'll learn more at my app't on Monday. To me it seems a lot more targeted and less likely to damage healthy tissue which standard radiation does. Good idea to ask around....there is one other surgeon I would consider in my area.
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Hi Kaara....Yes, anytime you have something "foreign" in your body, your body tries to fight it. I did have a little infection, but I took an anti-biotic for that, & it really was no problem. As soon as the Device was removed, it cleared up. It sounds like your Surgeon does not like to do them. I ALSO had problems with any tape they put on during surgery, because I'm allergic to that. So these things are just good to know.....
They put my Device in during surgery....Sometimes they are put in days later, for some reason. But mine worked out well....
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"When you find peace within yourself, you become the kind of person who can live at peace with others."
Anne Frank
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Good morning from southern Illinois. We are quite chilly here this morning despite a pretty sun hanging up in the sky......shudder to think how it would feel it it weren't there. I do tolerate the cold fairly well, but it is hard on a lot of people. I had the vantage point of living in southern California for 25 yrs. and basically not having distinct seasons.....though you recognize the difference when you are there. I missed the seasonal changes a lot....so was glad to come home for good.
Was a challenge ( I learned to drive on the L.A. freeways ) to drive here and very much so to get used to winter -- ice/snow driving. I thought I'd never bother....but finally had too.
Hope you are all going to have a great day with some sun to keep you cheery. I'll see you all later.
Hugs, Jackie
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@Chevyboy - I will be meeting with the RO on Tuesday .. and then another appt with my BS on Wednesday discussing possible use of Mammosite. May I ask - do you/did you get a seroma and does it remain?
I have seen testimony by many who are very glad they did Mammosite ... but at the same time have complaints of recurring seromas and pain afterwards. Thanks - Mary
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jstunme: What is a seroma? I'm also considering mammosite.
Jackie: Great words...find peace within. It's a rainy day here in sunny S. Florida, but I don't mind. Now I won't have to water my new little flowers that were starting to droop from neglect. Had dinner with some girlfriends last night...we had a blast, and no, I didn't tell them about my dx. It would have been too much of a downer. I'll wait till I have all the facts and a surgery date first.
Have a great weekend everyone!
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Kaara - this will help
http://www.breastcancer.org/treatment/side_effects/seroma.jsp
I just wanted to get yet another personal testimony from someone who has had it done.
Good luck to you (and all of you) in your journey.
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What sunshine is to flowers, smiles are to humanity. These are but trifles, to be sure, but scattered along the life's pathway, the good they do is inconceivable.
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Jackie, I cannot imagine driving on the LA freeways. I've seen them in movies and on tv but have never been to Los Angeles.
Today was a gorgeous day here in south Louisiana. I had a golf game with my regular Friday group at 9:20 am. One of the women had on earmuffs and three of them were wearing long underwear under their clothing! It was in the 40's but warmed up to the 60's before we were finished. The sun was out. It was wonderful to be outside. I tend not to mind cold weather. Plus a SE of arimidex is hot flushes so I enjoy feeling a little cool instead of being hot.
Afterwards I went to Walmart and bought the tiniest bicycle with training wheels for a birthday present for my great-niece, Olivia. She was two yrs. on Thurs. but we'll be celebrating her birthday and her grandmother's b'day (my sister) on Sunday. Olivia is petite but very agile and active. She will love having a bicycle like her brother (8yrs) and sister (6yrs).
Hope everybody had a good day.
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Morning everyone....jstunme.... A Seroma was really no big deal....it was just a little "pocket" filled with fluid, that was pretty much expected they say. It was natural fluid, that went into the same area that the MammoSite Device was taken out of. Kind of filled in the empty space. It didn't hurt, but I could feel it.
But after a few Mammograms, I can hardly feel it at all. It shows up on the Mammogram, but it doesn't have any fluid in it now. I think it got smashed to bits, ha!
Mary, if your surgeon & radiologist is considering this, I would really advise you to have this done. It is quite expensive, so check with your insurance to see how much they cover.
You only have five treatments, twice a day, but the technology they use is amazing. The link for the video explains how the "seeds" of radiation are sent through the tubes to the exact area in the fluid filled "balloon" and stay for 8 minutes I think....Then they are taken back out, and you are done.
There is a lot of positioning, and filling, pictures, consultations with each other before you even start the first treatment. So by the time you are ready for the treatments, you are thinking let's just get this show on the road. They also take a picture before each treatment, which is necessary to make sure nothing has moved.
So I haven't had any problem with the Device...just that little infection during the time it was there, (one week) and the Seroma, that is not even noticeable. They will probably give you an antibiotic during surgery, AND a prescription for one to take during your treatments. Mine did.
And they gave me this lovely "sock" to wear to keep the tubes & bandages in place! It really helps to hold everything against your side. It is a mesh gauze thing, that they put over your head, & cut off when you go in...In fact I asked for one, because I didn't want to think anything would fall out...
I wore button down shirts during treatments, and front-fasten bra's...In fact I still wear the same type of bras! But now you can't even see the scar from the Device! It just all filled in with no problem!
Carol, you and Jackie talk about driving in California... I don't THINK they even sell stick-shifts in that State, do they? Ha, ha! I could not imagine driving in San Francisco with a standard transmission! I was scared enough with driving my folks automatic, up & down those hills! Man, those were brutal!
I had my 11 year old Grand-son with me once, & we found this street that we started down, & I thought "Oh my GOD!" My GS said, "It's okay Grams, you can do it!" He thought it was rather exciting! I just pulled over & parked when we made it down, & took a picture of it...It looked like it went straight up to the sky, Ha! And then there was the traffic!!! But I loved that whole area! I loved everything about California.So fun to remember...
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Hi all,
Greetings from sunny Toronto Canada. I am very new to all of this, but have enjoyed reading your posts. Thought I'd share a truly not great story with you for your info. I am Stage 1 with no node involvement. But my path came back very low for ER and negative for PR and Her/neg. I was told I did not need chemo but just rads and hormone therapy as even with my low ER it would help.
My MO ran the oncotype test in spite of my saying no chemo. Thank G-d she did. To her surprise and my shock, I have a score of 48: high risk for reoccurance. So it looks like I am having chemo.
Just got the results yesterday. I am 68 and worrying about chemo side effects. I have 4 young grandchildren here in Toronto who I see regularly and do not want to distress them. Anyone been through this and can give me some idea of how I will be in terms of energy etc. My MO is talking about giving me the TC protocal. Any help would be great.
As for wrinkles: when I went for my rad set up...thinking no chemo...the tech asked me if I might be pregnant...the cut off for that question is 55. I said "no" and secretly thanked Lady Clariol ...suspect that is the last time that happens for me...off to mosturize this face...it is getting wrinkles just thinking about all of this...Then off to buy things for my grandchildren's b/day party tomorrow...Have a great day everyone...
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Morning Bella..Yes, your Onco score is so important in the decision to have, or not have chemo. It's always best to just do everything you can, and it has helped soooooo many women. Jackie can tell you more about it, but there are so many types, & mixes they can try with you!
There are a LOT of women on these threads that are going through chemo....!
And yes, we wish to thank Lady Clairol & her friends for all the help they give us, Ha, ha! A big hand everybody....
Okay Bella....I know you will get answers here...xoxo
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"I can't do it" never yet accomplished anything; "I will try" has performed wonders. -George P. Burnham
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Thanks Chevyboy for the add'l info on the seroma...I googled it and read about it as well. My BS said there were risks of infection with the mammosite which is why he preferred the other option. There is an intensive three week radiation program that is as effective as the five or six week program, but it is still whole breast radiation, and I would suspect more damaging than the targeted kind. If I'm a candidate, I am still going to push for the mammosite. I don't like the idea of getting radiation anywhere I don't need it.
I'm also going to insist on the oncotype testing..it's on my list!
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Hi Chevyboy,
Thanks for the encouragement. Know it will be chemo and rads and maybe even tamox. Tell me if this is the right place to ask about side effects of chemo. I have one other question: has anyone done rads first and then chemo? I am set for my rad treatments and just put them on hold till I see my MO. But wondering about the experiences of the experts...all of you!
Kaara: I am set for 15 rad treatments. Every day for 3 weeks plus one. My treatment does not radiate the entire breast, but rather is pinpointed to the specific area of my tumour. In fact, I finally got four tatoos ...at age 68...markers for the pinpointing. I had asked them for four little butterflies but for some strange reason they gave me four little X marks instead. Go figure! lol
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BellaJean Welcome to our humble house and I will have a lot more to say to you a little later.
Ah, Carole and Chevy.....just have to say a bit more about California, driving etc. First off, I was born and raised here in this very small, sleepy little area in southern Illinois. Had quite a yearning to see life in other ( and what I thought at the time ) much more advanced citified areas. So, over time I made my way to California....via, Alabama, Texas, Missouri, and Michigan. I skipped learning to drive, but finally Dh got very insistent in California.
I'm glad I did but in my early experiences there ( before driving myself ) it was standard that you drove as fast as everyone else. If they were driving 85 or 90, you darn well better too or be run down. It just wasn't customary ( unless you were lane-changing excessively or inebriated or something ) to bother too much with speeding tickets. I learned to drive in my hubby's 5-speed truck with camper shell on. I actually don't mind stick shift, but am lazy now and haven't used one for a long time.
Anyway, in hind-sight, driving here sometimes is a nightmare. People do as they want at the time....which sometimes mean they turn from the middle lane of the few one way streets we have here and other strange things --- like running lights. I don't know why since they get valid licenses, but they ignore rules of the road after. Thank goodness, not everyone, but enough to make it dicey on many occasions. So.....I think in hindsight I was often safer on the Calif. roadways, going fairly incredible speeds, with four to six full lanes because you had to be ever watchful and know what you needed to do ( get over for an off-ramp ) well in advance etc. It was easier than all the watching you have to do here for the person who is going to do something seriously wrong.
A little footnote here. It is all in what you get used to as I went to California when I got done all my treatments etc. For the first time since we moved back home......14 yrs. ago.....I was amazed and was glad my daughter and her dh were doing all the driving. I drove once and didnt' feel comfortable at all.
Bella -- everyone is a little different in their reactions to their chemo protocols. I didn't have TC, but I think it is a little easier than some. I frankly didn't have a good time of it with my chemo...lost 40 #'s, all the hair over my entire body and saw it being the longest 6 months of my life......the key thing is....I'd do it all again in a heartbeat. I am here, healthy and happy, and living life to the fullest again. So....the point is ( that while I think TC is a lot easier ) you do what you have to in order to assist your medical team in preserving your life and health.
I do think it quite likely you will lost your hair.....but there are wigs and scarves to use and hopefully, in Canada too, they have a "Look Good-Feel Better" program as we do here where you might get wigs and scarves, etc. and they give you free make-up and teach you how to make the most of your looks while you are undergoing treatment.
Anyway.....generally steroids are used to lessen any negative effects of your chemo --- like nausea and that will get you through most of anything that could be a trial. Sometimes you will get strange flavors in the mouth. None of this lasts by the way. It has a cycle right after your infusion.....and will peak and dissipate as the effects wear off. Now-days most of the problems connected with chemo can be minimized, if not eliminated so that you can get through w/o major upsets to your life. A lot of people continue to work....even through some fatigue. You just learn to let yourself nap ( I did and I am notorious for not needing naps ) when you feel it is there. Just listen to your body.
I looked on chemo as what I had to do to save my life and thought the 6 mos. that it took was a very fair exchange for the 61 good years I already had, and was very willing to do it in order to continue enjoying life with my dh, family, good friends etc. It was difficult for me, no doubt about that, but still a fair trade as far as I'm concerned for me to continue on with the life God gave me.
I hope you will continue to let us know how it is going with you. There are many places on this board where you can get tons of info and we are good at hand holding and helping you get through any troublesome times.
I'll be checking in later.....see you all again then.
Hugs, Jackie
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BellaJean: Interesting about the three week treatment...my BS just mentioned it briefly over the phone to me so I didn't get that it was targeted rather than radiating the entire breast. Another option to consider when I meet with him on Monday. Thanks for the heads up on that!
If I didn't say it before, welcome, as you can see there is a lot of good sharing of information, and friendships too!
All the best!
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Thanks for the welcomes. It feel good to have a place to talk and share. Kaara: Hope Monday goes well for you, and that a shorter rad course will be an option.
I go on Wednesday for a second opinion but I know that it will be chemo for me as my Oncotpye just came back and I rang the bell in terms of risk of reoccurance. A shock to me and others. But at least I know what I have to do as opposed to thinking I am ok when I'm not.
Can anyone tell me where to look for the side effects of chemo. I do so much better with information. Hate surprises.
Off tomorrow to help with a b/day party of two of my grandkids. Wishing all of you a joyfilled day.
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Bella...good morning! I didn't know how to explain the Onco test either, but I looked this up:
http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp So it answered a lot of questions for me....sort of.
At least with knowing you WILL have chemo, you can just listen to what they can offer you, and what they will do for any side effects you might have. Just don't worry...It's always best to KNOW what the plan is.
I know you will have fun with your Grand-kids! I would too, with mine, but at 23 & 25, I think the music would blast my hearing aids to smithereens!! And I don't think they drink punch at that age.... Course I could ask for Ovaltine.... Ha, ha!
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Couldn't decide which quote I liked best.....two very worthy and outstanding people so enjoy:
Whoever is happy will make others happy too.
- Anne FrankKeep your face to the sunshine and you cannot see a shadow.
- Helen Keller0 -
Good morning to everyone. Bella.... you might try the forum index and see as I would imagine there are a number of people here using your TC protocol. In fact, there are tons of info there, including how to read your path report etc. I would suggest reading through there. I think it may be a lot fo digest, but you would get good information about whatever is specific to your own diagnosis.
As well, you can just put the question into your computer and it will come up with answers as well. Most of these things are easier to handle when you do know what to expect. I do admit that when I was diagnosed....I was in such a state that I would read things and not really understand what I read and turn around and forget most of it. I think part was fear and part was denial.
We are here not only to hopefully help you find answers, but to encourage you along this path.
Hope you will keep coming back.
By the way....great avatar.
Be well.
Hugs, Jackie
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thanks everyone for your words of encouragement. I've been reading the TC forum and frankly felt better before I started reading it. Some of what our women friends have and are going through with the TC is really awful.
I've learned something interesting about me. I have not really been doing enough reading and research to understand what my having BC means in terms of risk etc. Now that is just not who I am. But my surgeon and MO at first were so reassuring that frankly I did not get it. That is until the Oncotype score came in. Now in catch up mode...I am a believer that information is power and the more we know the better prepared we are. So the more I know the better I will feel.
As for the avatar...Meet Savanah...a pure bred ragdoll that I got as an adult. She is amazing. The nights I am upset she snuggles right up against me. Other nights she is asleep at my feet. I believe that animal sense our emotions...crazy? Have a great day everyone. Off to shower after the treadmill and then THE PARTY!!!!
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Bella! I love Savanah! What a beauty! Okay....it really helps to have a positive attitude going into this....SOMEtimes the side-effects others have, is nothing like what will happen to you! Don't always think that "if it happened to them, it will happen to me"......
One friend....Jo, told me first thing, "don't always believe or listen to what you read!" This is so true. And you have to know there are lots of other women on this board who have gone through and are still getting some sort of chemo treatments.....
I don't post on the threads that have really no meaning for me...like the chemo ones, or the Stage 1V threads..... Not even the alternative threads, because I'm not doing those treatments. I can read them, but I would not post, unless they personally affect me. And besides, I don't know anything about those topics.
So don't get worried....just take note of what might happen to some women, and remember to listen & follow what your team wants for you. Remember, that you are "different" than each one of us....That's what makes you special! Just have faith in yourself, and your Doctors.....
Take good care...
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Bella beautiful cat, your Rag Doll. I've always hoped I would have one some day. In their description is says...when they snuggle with you it is like they don't have a bone in their body. They are so limber they just melt into you.
It can be scary reading a lot and Chevy is so right in what she says. There can be two people with the same diagnosis, as well as the exact same chemo regimen and you will have totally different reactions.
Chances are you could be the one that gets next to nothing for side effects ( se's ) or you could get several. Their have been many yrs. now of trial and error to find out what works best to relieve so many of those se's so they are not nearly as troublesome as they once were.
It is hard to relate for many of us to this diagnosis --- this was the only one of a few things that went wrong with me that scared the pants nearly off of me. We learned a fear for this disease I think from a long time ago, when it was some times very harsh on people, bu they do have so much help now with things.
I don't read too much on the other threads and forums.....I needed information, but I reached a point where I could do as well if I didn't read it all. Our bodies are all so different and so predictions about what might happen are not much help.
For myself......and I think this was the rule of thumb so to speak for many of the ladies I've talked to over the years, we chose to be as aggressive with our txs as we could. The idea was.....if you chose to skip some part of it, and you had a recurrence, you would always have to think if only I had not skipped the part I could have done. For most, it is 6 mos. or so, give or take, to go through txs. and then you are looking at getting your life pretty much back. Of course, you will have check-ups for a long time afterwards, but the active tx. phase is usually all done. You may be put on a 5 yr. pill, but you get use to it....just like taking any other daily meds, including vitamins. It becomes routine.
I'm glad to actually hear that your medical team is reassuring you. They have a positive attitude and that says a lot I think. Being positive partly is seeing a picture of yourself as getting and staying well. When you keep that picture up there, you will do so much more for yourself than someone who can't. We sort of are what we think to a degree so hope and positiveness are tools and which I think so HELP us look for and recognize what is correct for us.
Easy for me to say, but hang in there Bella. One day at a time, and know you always have some one to lean on here. Who cares very much how you are doing.
Hugs, Jackie
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Hi Chevyboy and Jackie, and everyone else on this board.
First, I read Savanah what you said and she purred and got all puffed up. Her way of saying thank you and yes I am beautiful. I've always had pets. I love animals. Before we moved into the condo, my DH and I had a dog, two cats, and an aquarium filled with wonderful fish. Now, after we lost our dog to old age, we have Savanah. She is more like a dog then a cat, greeting us at the door and always with us. Ragdolls are great cats!
One comment: I actually don't have a team. They talk about a team up here but for me it is non-existant. Our health care system is really siloed: with each discipling doing their own thing and not talking to one another and sometimes not to me. I am doing so much case management of my own care that is leaves me feeling very alone and on my own with this.
And when my oncotype results came back on Friday, and I rang the bell in terms of having a veyr high score, I was told by my MO that no one expected this and she is not sure that the results are valid as on the oncotype test I was ER- (a counteridication for oncotype testing.) I am fine with having the chemo. I just want information so I know what to expect, and I am not getting it anywhere but here. Sad I think!!!
I agree with you both about not posting or even going to places that are not relevant. It can really be overwhelming and hard to separate the wheat from the shaft. Gosh that is an old saying. Showing my age? And the most important thing you said and reminded me of is to remember that we are each different and not to take on other people's experiences as this is what it will be for me. Thank you so much for that, and for listening. Savanah and I both send you hugs tied up with hope. Have a great evening. Bella
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Welcome, Bella. You've already had some great advice from the helpful and compassionate women on this thread. I agree that it's good to do research and read the discussion forums that relate to your situation, but don't let what you read frighten you. I've been on Arimidex for 2 yrs now. Prior to beginning the drug, I read the discussion forums about the "little white pill" and was scared to death to begin taking it. Some of the SEs sounded so awful. Well, I began taking the pills, soon learned that it was best for me to take the med at night. And life goes on. I don't have most of the really bad SEs.
So with luck you might not have the worst SEs of your chemo treatment. I talked to one woman here in my area who rides horses and she continued riding through her chemo.
I was more nervous waiting for the results of my oncotype than I was when waiting for any other test result. But even though mine came in low, I'm still having to take Arimidex for 5 yrs.
If you would like to talk to other women who were estrogen negative and had the oncotype, you can start your own thread. It's very easy. I did that when I was waiting for the oncotype result. I asked women who were Stage 1, Grade 3 to report and tell me about their oncotype score. I was afraid the Grade 3 would cause me to get a high number. Quite a few women posted and gave me a lot of support. Hang in there and keep us updated.
Savannah is gorgeous. Cats are such interesting animals with their own personalities.
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