Can we have a forum for "older" people with bc?
Comments
-
Momushka I called my 19 year old son at college to tell him I was having surgery for breast cancer. It was one of the hardest calls I have made. I waited until after I had the results of my core biopsy and had spoken with the surgeon and had an MRI. I was able to let him know exactly what was going to happen. He was shaken by the news but told me he was very glad I told him. My husband called him as soon as the surgery was over. Last summer my husband was diagnosed with cancer and did not want to tell our sons (the youngest is 15). I overrode his decision and told them. They were both very glad I told them. He would not tell him mom and when he finally did (after towo surgeries) she was very unhappy he waited so long. There is a section on this site on how to talk to loved ones. I was as positive as I could be, and fortunately although I needed chemo due to high Oncotype I was node negative and no sign of spread. The way I looked at if one of them had cancer I would want them to tell me. It is very hard over the phone, I practiced what I would say and called at a time I knew would be convenient. GOOD LUCK!
0 -
Good afternoon ladies....we had a super storm this morning so although I read here I did not post. First, thank you so much Leslie. I used to go with ex-hubby's family often from Detroit and thru a tunnel under the Detroit river ( very scary -- two lane and not lots of room on the side either ) to get to Ontario and then to Amherstberg where my then MIL's family all lived. That was back in late 60"s and I had forgotten most of the geography. Just remember that tunnel with water Leaking/dripping???? here and there.
Also to clarify about my SIL......Heidi is my hubby's brother's wife. I probably should not have capitalized SIL and made is sil....sorry.
Momushka - I'm not sure I will have an answer for you but will throw out a few ideas. First, I was wondering....mastectomy -- partial or full, or will it be a lumpectomy. Was this found in a routine yearly check up. With a mastectomy you may need some radiation after-wards. With breast sparing lumpectomy depending on what your pathology report says....you may need radiation or radiation and chemo as well. There is a place here where they will tell you how to read your own pathology report.
As far as telling your close family members, it will be difficult but honesty really is the best policy. If you don't tell them and they hear it later and don't have the opportunity to support you in whatever way is possible they will feel bad I would think. Also, there is a chance that their likelihood of getting this problem is now higher and they should know that as well. How did your mother tell you when she had it...if she did before hand??? I would try to be as positive as you can. If you feel your cancer is small and was caught early no reason why you could not or should not project hope and optimism. Take a couple of days to get used to the idea yourself, and read some of the entries here in the blog.....you might want to go into the forum index as they may even have a little section on telling your loved ones. Just book-mark or put this page into your favorites as it's easy to get back to then. We'd like to stay by your side and help you in any way we can. I'm not highly knowledgeable, but many here are. We can help you thru your journey as it can feel lonely and frightening at times. Also, you will easily pick up the numbers and terminology so won't let that be off-putting either.
Your in my thoughts and prayers.
Hugs
Jackie
0 -
Thanks for your quick responses. Just confirming what I know - honesty, optimism and love. Just saying the words "breast cancer" freaks me out a bit. I'll be having a lumpectomy and radiation - a decision about chemo to be reserved for later. My mother (we lived on other sides of the globe) told me in a letter something like this....."sorry for my messy hand-writing but I'm writing with my left hand as I just had a right radical mastectomy two days ago and am not too good with my right side yet." We tease her about it to this day. I actually understand her waiting until after the surgery to tell me - "why should I worry her" but I'm not so sure it's the way to go. Think I'll handle the kids first and then see how I feel about telling her. Thanks again for your caring words.
0 -
Afternoon Ladies,
Jackie I am praying for your SIL. Hope she does well.
Leslie, LOL, I like the way you think. I have become a bit of an "it's all about me now" person myself. I want to go out to San Antonio, TX and then to Calif. and Washington State to visit some friends next summer and I have decided I will be here to do that!!! That is a good feeling. Then the year after that to England and Ireland because I am a consummate Anglophile. (That's just a plain old projection, "Man plans, God laughs." ;-)
Lizzy and Hanna, welcome, Momushka, I have two grown boys (men) and I just "told them" but they are very independent so they didn't react much. They just want an update now and then. They live in Virginia and I am in Florida so my problems are not happening in their faces, it might be a bit different if they were.
Tomorrow morning is my next appointment with the Onco and next infusion of Zometa. We will see what he says this time. I was so surprised to discover that the CA 27.29 is not an exact scientific test, there are variables. I figured if it goes up the Arimidex was no longer working. It's nice to know that, that is not true and nice to be armed with the knowledge, although this Dr. is pretty much up on everything.
I also found out there is a test for susceptibility to ONJ. That is nice to know. Now to find out if he does the test or if a Dentist has to do it. I have to find a dentist that is up on Zometa. I am not having problems so far but I have one tooth [of the nine I have left in my head ;-( ] that has been a bit difficult. I have questions to ask the Dr. this time, i.e., what supplements to take to boost my immune system, and I am hoping he will listen to them. I am usually in and out. My friend Carol, "the nurse" is going with me so if I can't find something out I am sure she will tell me who and how to ask. She had her chemo at Florida Cancer Specialists, so she knows how to play the Dr. game there.
Well, welcome to all the new people, you'll get wonderful support here.
Have a good one ladies.
Hugs, Pam
0 -
Momuska, I am a widow and my only son was being married 3 weeks from when I got the word it was cancer. I told him and his fiance, after inviting them to lunch to discuss wedding plans. We agreed NOT to discuss it further until after the wedding and my doctors were OK with waiting till after the wedding -- although I did meet with the breast surgeon before the wedding. Then it was full steam ahead with dose dense chemo. The inlaws took me to my first chemo and then out to dinner, since son and wife were off on their honeymoon.
0 -
Momushka
I don't usually post much. I read posts all the time but a little shy to post. Anyhow when I read your post I felt compelled to answer. I have three grown daughters and I was reluctant to tell them when I was diagnosed with bc. A good friend of mine told me I was being selfish by not telling them. So I ended up telling them and they have been a great support since. My oldest went with me to the first surgeon visit and was able to ask things that I guess I was too numb to think of. All three of them were there for my surgery and have been very supportive since. I hope you are able to tell your family. It will take part of the burden off your shoulders. My prayers are with you. Judy
0 -
0 -
Hi there Momushka...it is difficult to actually say the words..but my sons and daughter in laws were very supportive..my middle son came with me many times, especially when my husband could not..maybe practice is good...
We are now in Banff, Alberta, Canada...beautiful
0 -
Thanks to JO, I've figured out the pic posting--but obviously didn't get the resizing right. Will work on that. Anyway, these are the reasons I'm in this fight to win! Helen
0 -
What beautiful pictures as always. SoCalLisa, I think you could do travelogues for people. Your pictures are stunning and look to me like something you might see on a postcard.
Helen......what a nice picture to keep and it is easy to see why you intend to win your fight. Beautiful little ones who deserve to have a happy heatlhy grandmom who aores them.
Thinking back on admitting I had cancer.......not really easy as I was so full of fear, but I knew big changes would come and that I might as well get it out there. Each time it got easier. I still easily recall how brave I was when the biopsy Dr. called with the results. I was as cool as a cucumber all the while we were conversing.....the minute I put down the phone I slumped over my desk and just cried my heart out.
Hope you all have a good day. More storms today....hope it's just rain. Not far from us ha tornado yesterday.....about 55 miles west of us toward St. Louis, Mo.
Hugs,
Jackie
0 -
Thanks to everyone for your kind words. Was never a question to tell the kids or not - it's just the "how." Today I told my boss why I've been missing a lot of days on sick leave - this dr and that test - and at first I just said "I have to have surgery." I had to force myself to say the words - "it's breast cancer." I'm sure it will get easier. I feel stupid and silly worried about this when so many of you have already experienced so much worse (chemo is my big dread). I just find it very difficult that my whole identity (ok - not my whole identity - but a big part) has changed - I'm now a breast cancer patient - without my ever doing anything to cause this. Maybe that's what's really bothering me - not the kids themselves (I know they'll be amazingly supportive) - but my having to say it out loud. Saying it out loud makes it so real. OK - I'll stop ranting now.
Gramof3 - they're stunning! They really ARE the reason to fight back. And not knowing you before, I can actually say you look great in the scarf. Well done!
0 -
I realize this is just a matter of semantics. I say I am being treated for breast cancer rather than I have breast cancer. That way I don't feel like the word "cancer" defines my life. I agree it does make it real when you say the words breast cancer to someone.
Gramof3 your granddaughters are beautiful.......
0 -
Momushka & knowledge for power--- this is a difficult word CANCER and tends to bring fear right up to the top of the pile immediately. Out of all the things you could have happen to you ( and I had a fair share ) this one just makes you feel powerless and wondering how soon your name might show up in the local obits. Nothing has ever made me feel like that before. This was not suppose to happen to me anyway. I had no family history and felt my lifestyle was not very conducive for it......so it was the last thing I expected. You cannot prepare to hear this diagnosis and after you do....it's just about all you think about. I skipped some annual get together because I knew ( and it's rather standard at these get together ) that almost everyone to a person would say " How are you ", and I'd be just as likely to break out in tears before I gave my well rehearsed just fine.
I doubt any of us are the same people. Even though we change in several ways ( not bad by the way ) others around us change too. Some don't know what to say and ignore you.....others think they are helping by talking about what went on with someone else they knew. They are afraid to deal with you directly so they talk of someone else. My best friends could ask ME how I was doing and what I needed, They did not look away or shy away but dealt with me as they always had......this is a blessing. Many don't want to know what you are going through --- I think it's partly fear......and I have always thought some are so glad it's you and not them......that the guilt just gets the best of them. You may lose a friend or two.....but for me I did not consider it much of a loss. Rather....it gave me more energy and time to spend with those who had my best interests at heart and really did want to see me win the battle.
Go ahead and experience what ever feelings you have.....the good, the bad, and the ugly if they come. Once you claim your feelings totally you will be able to stand away from them and not be nearly as adversely affected. The sooner we make peace with our feelings through our acceptance of them, the sooner we can move on. Do remember that most of us started this journey just like you have....we had to learn the terminology, figure out what to do, gather together resources and fight wanting to slip into denial. If I had it all to do over again....the first thing on my list ( it wasn't back then ) would be to get on a cancer blog like this one. I got more answers here than I did at my chemo center. I certainly got a world full of encouragement and understanding --- and I needed it. I had 4 rounds of Adriamycin and Cytoxan by I.V. once every three weeks....and 4 of Taxotere --- I.V. once every three weeks.....and then 7 weeks of radiation every day. It was not fun and a couple of times I questioned whether I would get through but rather than look at the big picture I concentrated on getting to tomorrow and when I did that....the next tomorrow. Small steps, well measured will get you to the winner's circle.
I have probably given you more information than you ever wanted to know....but this is about you and don't think of us as ahead of you. We are behind you waiting to help you get through because those in front of us left the front to stand behind us so we could catch up to them. We are only returning the favor.
Hugs,
Jackie
0 -
Just found out my last Herceptin is July 16. This means only 2 more to go -- can I say Wooooooo Hooooooooooo !!!! Those just beginning the journey, - gentle hugs. It was over a year ago, May 2, 2008 that I got the positive results for BC. You do NOT have to like it, you can NOT change it, but you can get through it with the help of those who are there or have been there. This site is such an important part of my life I cannot imagine what would have happened if I had not found it.
Blessings for All, Nancy
0 -
Nancy - congratulations! I can hardly wait to get where you are! May I ask - having read the possible side effects of herceptin, how did it make you feel? (Sorry if you have already said this, I can blame chemo brain!)
0 -
Hi Ladies,
I was told a while back that "What other people think of me is none of my business."
I have found that to be so helpful in my life. I think it is how others react to the word Cancer that I could let cause me the most problems. I didn't want anyone saying anything negative or hurtful nor did I want them blaming me for not getting to the doctors before I did. I was told by my doctor to stay away from anyone that does a blame and shame game on me. Some people react badly to my saying the word CANCER. That is really "their" problem, not mine. I am now really pleased that I brought my boys up so independently as their reactions have been the best for me. They say, "You'll be fine mom, just let us know how it is going. We love you." That is all I need. They have confidence in the docs and in me. I have Stage IV breast cancer, I am NOT going to get out of this alive --- but then again, I am not going to get out of life alive am I? If I say the word Cancer and I see a bad reaction even in my family, except for my boys, that person becomes marginal in my life. I don't have the time to put up with or deal with "their" reactions. My boys on the other hand I would keep trying to help them understand.
Today I went for my Dr's appointment and my Zometa infusion. I was able to let the Dr. know that there is now a test for ONJ which he promptly looked up on the computer and said, "My heavens there it is, look it's right here. It is a brand new test." He ordered it for me and then went around and told all the other docs. So now all of Florida Cancer Specialist are doing that test I am the first one being tested. I got the information off of another "Advanced Breast Cancer" website and was able to do something really good for lots of BC women in Florida. I have value and worth and will until the day I die. I refuse to believe otherwise. That attitude is up to me!!!
He also said my CA markers had gone down to 12 and he was really really pleased about that. The Arimidex will work as long as it works and then they will try something else. I do know that he has no other plans for me for the rest of the summer, then in the fall we shall see. Like I said, I have every intention of going to San Antonio etc., next summer. "I" make the plans, God is the only one who can decide if they will work or not and what God has planned for me is also "none of my business."
Have a great day ladies, I have helped someone today and my plants are growing. I have had a wonderful day.
Hugs, Pam
0 -
Pam, I agree. I don't even need to say the word cancer. I currently need to use a walker and the looks I get when shopping or many divert their eyes just when I am ready to greet them with a big smile and "hello". Sometimes I think it would just be easier if I tatooed the words "I have cancer. What's your problem?" on my forehead and be done with it.
BTW Pam, I sent you a personal message as I think we have more than dx in common.
Sandra
0 -
I am sure I have not mentioned it here before - but I spent between 15-20 of my working years doing cancer registry work. To be a cancer registrar you basically have to learn everything about every kind of cancer there is. To manage a cancer registry (which I did for 7 of those years) you have to follow up every patient on a yearly basis. After a time you pretty much get a feeling for what to expect for what kind of cancer. When you find out someone has been diagnosed you immediately want to know primary site, histology, grade, stage, treatment, etc. because you just think in those terms. When you work in that field, you also network with lots of other people in your state and indeed, in the whole country, and before long you end up meeting people who have been diagnosed and treated, too. So when I was diagnosed in February, I had a pretty good idea right away where I am placed in the whole scheme of things. Since I have not worked in the field for the past 5 years - I am retired from medical records work now - certainly, new tests and treatments that I am not familiar with have come along. But as far as letting anybody know it has not been that difficult for me. It is just a thing that happens. To many of us. I had no problem at all telling my family.
0 -
.
0 -
Wow! I finally made it home and it will take me a couple of weeks to catch up with all of you. Welcome to all you new gals. This thread is certainly a true place for comfort, knowledge, and support and the women here are awesome!
Helen, I love your grandma picture! What a lovely group of grandchildren you have! You look pretty darn good, too!
Lisa, you're still exploring! What lovely pictures you take! I took alot of pictures, too but I'm not as talented as you! Travel safely and enjoy all the lovely sites you are seeing!
Maire, I love your last post. You have a great way with words. You expressed my sentiments perfectly. I, too, have learned alot from going through this journey. Congrats on the four years! You are a great inspiration to me and the new gals.
I will sincerely try to get caught up with everybody tomorrow afternoon. In the meantime, hang in there!
Rita
0 -
Hi Friends, I am getting ready for tomorrow, I see the old cancer dr at 1 o'clock and then
make some changes if nothing is done, I shouldn't even say if nothing is done, I am in pain,
my lymphedema bad, don't know about thyroid tumors(7) just by scan, He got mad at me cause
the ER sent me to him cause of my count (was low) Well God bless you all, I better get things
ready for tomorrow. Take care, Debbie
0 -
I have no time to post - am still in the throes of moving. Spending tomorrow with the junk hauler to clean out the old basement! I've just about decided that moving may be worse than Stage IV cancer! (just kidding, but tonight it feels like it) Just wanted to say that I just read all your posts and think you are an amazing, wise group of old chooks! Love each and every one of you. Big, big welcome to all the newcomers! I'll be back in a few days -
0 -
Oh hugs, Debbie! Please let us know what you find out!
0 -
rita..here are a couple I took today...we are still on the road...in Banff now and head back to Glacier National Park tomorrow...glad you are safely home...come on and share some pix..
0 -
leslie, I had Dose Dense A/C then 12 weekly Herceptin and Paclitaxol before lumpectomy. The chemo zapped my tumor and there were no cancer cells with the lumpectomy. The re excision was because the "live and normal cells" were only 1 mm wide.
There is a thread for herceptin 2009 that has lots of info about side effects. My worst is neuropathy, numbness in my left (dominant) fingers. But I also had 7 reconstructive surgeries on my left wrist, with nerves and 2 bones removed. Tiredness and fatigue are the main side effects for me. I rest when I want, sleep as long as I can and take it one day at a time. A MUGA scan or echocardiogram every 3 months to check heart function is part of it all. My results never changed at all from before I began A/C to the latest scan last month.
The pictures of the snow cooled me off from this heat and humidity. Beautiful and thanks for sharing.
I play bridge with 2 different groups - fun games, no master points. One lady whose husband has dementia keeps trying to tell me how hard her life is. I have compassion for her, but I am a widow for over 6 years and I was my DH care giver until he died in trauma ICU. Maybe I am being selfish, but once I agreed to meet for dinner and she did not let me get one word in edgewise, a continuous moan and groan. I was also bald as could be and doing weekly chemo. She has since "invited" me for dinner several times, but I say I am too tired or have other plans. She is a real "downer" and I am trying to keep upbeat people around me. Am I being selfish?
0 -
HAND SANITIZER RECALL: The Clarcon recall affect these products:Citrushield Lotion
Dermasentials DermaBarrier
Dermassentials by Clarcon
Antimicrobial Hand Sanitizer
Iron Fist Barrier Hand Treatment
Skin Shield Restaurant
Skin Shield Industrial
Skin Shield Beauty Salon Lotion
Total Skin Care Beauty
Total Skin Care WorkSome of the bacteria found that caused the hand sanitizer recall can cause skin infections.The recall was voluntary by Clarcon, but the company has not commented further on the incident.
0 -
SoCalLisa, great pictures!
Debbie, prayers for your doctor visit today. Come back and let us know the outcome.
LeftyAKANancy - NO your are not being selfish. Life is too short to waste precious time with negativity. I found that out over the last 25 years raising a child with CP who to this day, despite so many challenges and disappointments for him, still smiles and is just always happy. I think that is partly what has kept my spirits up these months on this journey. Compared to what he has faced mine has been a piece of cake. So continue to surround yourself with positive vibes because that's what is healthy for you.
0 -
Ladies I am off today for my first meeting with the radiation onc. I am expecting him to say about 6 weeks of rads and as we are vacationing for a week in July I am hoping to start as soon as we get back. Hopefully there will be no surprises as there were with the onc and his news about the her2+.I did not lose my hair during taxol, but now it just keeps coming out more and more hair each day after I have been done 2 weeks. None of it is coming out in clumps just thinning all over. I don't know if I will end up with hair left or not. For alot of people it starts to come back during taxol. I guess I will have to wait and see. One day at a time just like everything else about bc. Annette
0 -
Good morning.
Cheyanne: Sounds like it was easier for you having worked so closely with cancer....used to the words, terminologies etc. I recall my cousin ( a nurse ) being asked by my Aunt to **tell them what is wrong with me** and Lori with a pensive and very sad look swallowed hard a couple of times and then said Auntie had advanced colon cancer. We all knew she chose to use the word advanced so we would "understand" how late it was found and therefore the prognosis would not be a hopeful one. It was so we could deal with the realism.....Lori had been an Oncology nurse for a long time and knew what she was talking about. Still.....she was talking about a close family member, her Grandmother and it was so hard for her to put voice to those words.
Maire: you are a great inspiration as are so many here. I need to hear the **voice** of reason now and then and yours is one of them. Blessings.
Debbie: I'm a little appalled. I do not understand a Dr. who could be mad with you because you needed to go to the ER for help and direction, and must assume it may be because he should have had a handle on these things so you would not have to do that. I hope you can see your way to repairing this situation or finding someone who you can relate too a lot better and vice versa.
Allison: I think moving is one of the most difficult jobs there ever were. Unless you only possess things which you use every day almost and not much more....it's a long, tedious process which is hard on the back, legs, arms filled with frustrations and set-backs and becomes as time goes on a very mental challenge along with the physical. Hats off to you --- and to you too Pam as I know you recently have had to do this too.
Lisa: I love all the pictures this time but the first and last one are stunning. I think of water as very spiritual so anytime I see that in a picture I am quite taken.
Nancy: You are not being selfish...you are protecting your health. I feel for this lady. I'm sure her life is difficult but she cannot un-burden herself by placing this on all of her friends or acquaintences. Seems what she needs is some " group support " from a demtentia caregivers' group and quit putting all of this on others who have their own problems and concerns. It always behooves us to TRY to **target** those who could really help us. Probably you, like many I know, do not mention their ailments too much or somewhat lightly unless our friends really wish to know. I will hope for this lady that she is able to find the proper resouces and Nancy....good for you. You know what it takes to care for yourself.
Hugs,
Jackie
0 -
Annette, Since you're not sure if you'll lose you hair or not, there is a product called Nioxin that might help. It is for thinning hair. I used it continuously during chemo since I had the CMF and didn't lose all my hair, but just had extensive thinning. I bought mine at the beauty shop inside Walmart in Bloomington. It was a little cashy but lasted quite a while and seemed to work.
Nancy, You are NOT being selfish. A positive attitude is so important and it's hard to have a positive attitude when surrounded by that type of person. Do not feel guilty!
Lisa, your pictures are lovely. I have a terrible time getting pictures downloaded and posted but I will try to see what I can do this weekend or early next week. In the meantime, enjoy the rest of your trip, travel safely, and keep taking those lovely pictures!
Cheyenne....so glad you waved when you passed through town and so glad you're home safely! :-)
Off to find my recliner!
Rita
0
