Class of 2009 - Sisters in the same time frame
Comments
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Another thing about telling people about your bc. Your emotions run so high sometimes that I wanted people to understand if they had a reaction from me that was not normal. If I cried or had a breakdown, then I didn't want people wondering about my sanity. People will find out and if they can't talk to you about it, then they feel shut out. Also, people say the stupidest things, but most people don't know how to deal with serious illness, death, divorce, etc. and they are just trying to be comforting. You have to have pretty tough skin to have bc. Even my DH has said stuff to me that sent me to the other room crying or looking at him in wonder, "What tree did you just fall out of?" But he means well and has had to apologize more than once for stupid statements.
In the end, it all boils down to what makes you comfortable. Like Renee, I am a very open person and can't keep my own secrets.
Juannelle
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M360, my cats are both Maine coons...hhmm.
I didn't tell anyone until I told my kids and our parents, and my boss. Then once it was confirmed I told everyone...I don't mind that people know. I find it easier on all of us...people don't mind asking questions and I don't mind answering..Besides this is just a bump in the road for me...
Well am heading to bed...lets hope the roids don't keep me awake.
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Webster -- I have told very few people. My family. My boyfriend's family. A few people at work (I teach in a university) who needed to know in case chemo got in my way (as it happened, it didn't) and one close friend. I wear a wig that is different looking than my hair was (which all fell out during chemo) and just tell people I had my hair straightened (wig is straight, my hair was curly/wavy). It's a good wig as even a close friend who visited from Florida did not know and was so impressed with the straightening. For me, it was just not wanting to have to talk about it with people. Although it's true, as someone posted above, most of the time no one who does know wants to talk much about it anyway
But it's also not wanting people to treat me differently. I am lucky because chemo (and this cancer so far) has not stopped me from living my life -- and to me that is what matters.You only should have to tell the people you want to tell. I think it's a personal choice... and there is no one right way to do it. Some want to tell everyone -- as witness the posts above -- some don't. Both are totally appropriate approaches to the situation.
Cheers,
Lilah
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Thanks to everyone for your feedback. With the holiday season I feel that I would be a downer telling folks at gatherings about my cancer so will keep smiling for a while and say I'm great. All things considered, I am doing great.
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HELLO, LADIES! It's so good to read about all of you. Today was rad #6. Yep - went in on a Sunday. Have to have at least four days of radiation in order to be able to take Christmas and the following weekend off. The first day DID in fact cause a little burning sensation in the evening. We have that under control for now, though. Pam - I have a cough, too. Started with radiation. Had yesterday off, and it was better. With today's treatment, there is a tight feeling in my chest and kind I have a raspy voice. Weird, huh? The esophagus is nowhere in the radiation field, so go figure.
I've been AWOL for a while, but am up to speed with all of you. Welcome to the new ladies. Hugs and kisses to the regulars. Love you - you're great, each and every one. A word of encouragement to M360 - I am an autoimmune person, too. It sounds like you are really having a tough time. So sorry. I did do chemo. Taxotere and Cytoxan. I made it through. The steriods were WONDERFUL for the back and joints. The rest was, well, chemo. Had to stop short of one treatment due to central nervous system issues, but we did a lot of good with the first three. Hang in there. Keep us up to speed, will you?
Getting ready to do a Christmas dinner with my sister and nephew tomorrow night. Making a kid-friendly meal today so I won't be pooped tomorrow. Hope you are all doing well today. XO, Mary
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Hi Mary!!!
So good to hear from you. Wow, rads on Sunday... I didn't know you could get them to do that. My husband read Warren Buffet's biography. His first wife had breast cancer and he did not understand how it was ok to take off on weekends. But for all his money and power he could not get them to agree to treating her on weekends. Should have talked to Mary!!!
About the esophagus cough thing. My radiologist would not allow as how my tickle cough had anything to do with radiation. But it lasted throughout rads and cleared up within a couple weeks of finishing. Was never bad, just a tickle. Kind of like you wanted to clear your throat. Also, my tumor was upper outer left breast but I "tanned" centrally in an oblong-rectangle that extended to my sternum almost to my collar bone area. I don't know if it was on purpose, like zapping the medial lymph nodes or was just from scatter? The therapists seemed to think it was on purpose. Also, no hair in that underarm 6 months out. Dr said they did not treat there but... why no hair? Not really complaining.
Plus, I never have a cough so I am convinced it was the radiation. Enjoy your company. I love seeing everyone during the holidays.
pam
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There ya go Webster
Sometimes it just feels good to smile!Cheers,
Lilah
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Hi All, I hope everyone had a great Sunday. I had radiation txt # 8, like Mary, we had to go in today to make up for missing two days at the end of this week. They don't want us missing 4 days straight. But oh how nice it will be to have 4 days free from radiation!!! That is my Christmas present this year. LOL!!!
We had our children's church Christmas program tonight and they were just too cute... all dressed in their Christmas p.j.'s singing Silent Night and Jingle Bells. The Children's Church teacher read them a Christmas story as part of the program, then afterwards they had milk and cookies for the children and sandwiches and chips in the fellowship hall. It was great!!!
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Just popping in to say hi...
Having perhaps the worst day so far...I feel like a Mack truck has driven all over me today...not sure if it is the Taxotere or the Neupogen shot...either way it sucks..
I tried to do some shopping this morning, but I had to come home, it was to frustrating..I was shopping for stuff my DH should be buying...electronics..I just quit and came home to my sofa and heating pad.
Thank goodness it is leftover night..
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Michelleboots,
We all have to learn to delegate! That's why men rule the world... they know how to get someone else to do everything! I'm so sorry you are feeling so bad right before Christmas. But if ever in your life you get a free pass, NOW should be it. Cuddle up on your couch and stay warm. Give promissory notes for Christmas
pam
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Hello everyone~
Michele- I hope you feel better soon. This had to be extra hard to deal with on top of all of the things that need to get done for Christmas. I wish you well.
When I first got DX I only told a few people, family, close friends and my pastors at church. But then, I realized that it was ok to talk about it. Once I could tell someone without crying I knew I could start telling more people. Now, I don't care who knows, people can talk about it, ask me questions, whatever. I am like you Renee, I am a pretty open person most of the time and it helped to talk it out with my friends and family.
Juannelle- I am glad you only have 1 more treatment to go and I hope you feel better soon from the one you just had.
I hope you all are having a good evening and get a lot of rest.
Hugs-Jen
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Michele, I agree with Pam, cuddle up on your couch and stay warm. I hope you are feeling better soon!
I am totally counting down my rads... had #9 today. Hope everyone else is feeling great and enjoying the holidays with their families.
Renee
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Sorry to hear you're feeling down, Michelle... I know that mac truck feeling well! I found that drinking a LOT of water and taking 600 mgs of Advil every 4 hours helped immensely (for what it's worth). Take it easy...
Lilah
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Can someone possibly help and give me some information?
This evening I found a small hard "knotty" area just above the area where my sentinel lymphnode dissection was done. It is a little tender and seems to coincide with running down my side to my rib area where I have had so much soreness. I was wondering if this was the beginning of "cording"? or could this just be scar tissue? Does anyone know? I am hoping not!!! I going to ask the RADS techs in morning if I can see the rad onc and let him check it out. I'm kinda worried and even cried a little of course the first thing that came to my mind since it is in the area where lymphnodes were removed and it's a hard nodule... Well you all can guess! But it is sore to touch.
Thanks Renee
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The bump near the site of the incision is probably scar tissue but ask the tech (or your doctor) to make you feel as at ease as possible. It may just coincidentally seem to be (or be) connected to or near muscle that is cording a little; I wouldn't worry about that either. Do some stretching til you feel that area pull a little (but nothing that hurts, just something that tugs at it) and the cording (if that's what it is) will eventually work it's way out. It sounds like what I had, for what it's worth. My "cording" was at a point that was directly below where my SNB scar was (about 4 inches down?) at bottom of my breast tissue; I found that if I did arm lifts to stretch against it, it went away in a few weeks.
Cheers,
Lilah
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Hi Renee,
Sorry for this to worry you at this time. I had a hard knot come up suddenly on my chest, not the side of my lumpectomy. It was sore, about the size of the last segment of my little finger. I drew a circle around it with a magic marker so I would not lose it.
By the time I got in to see the dr a couple weeks later the knot was gone but circle still there. My onc said not to worry and it has not come back. I guess we just worry about everything... with just cause. I hope yours resolves too.pam
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Michele ~ I am so sorry you are feeling so bad.
Please allow yourself the rest you need and don't worry about presents right now. I know it is hard !! Healing hugs sista.Renee ~ I don't know about that soreness thingy you are feeling. Ask them at rads. woo HOO 9 down ! I do know both my underarms are still sore over 2 months out.
Healing hugs to all.
Alicia0 -
Thanks to all of you ladies! I was never told or taught to do any kind of stretches. But as you suggested I am going to mention tomorrow. I know that they are going to think I am some kind of hypochondriac. LOL! I guess at this point I am. I know for a long time after I completed chemo for Hodgkin's Disease I was in the doc's office with myself and my kids for every little swollen lymph gland. They usually were nothing and I guess it will be like that again for a while, but better safe than sorry. All I know is I want radiation to be done with and I want to hear those words... No evidence of disease and it to stay that way for a very long time to come... I want that for all of us and I pray for it every day :=)!!!
Renee
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Hear Hear Renee! Actually I had my nodes dissected by a different surgeon than the one who just did my MX (right breast). The first surgeon did not tell me anything about stretching (at that point I had had just a lumpectomy and SNB/axillary node dissection). I could not lift my arm above my shoulder for three weeks after, whereupon I saw my Oncologist for the first time, who told me about these exercises you are supposed to do to restore movement to your muscle in that area (including shoulder). I have seen a link posted elsewhere to these exercises (so after I finish writing this I will see if I can find the info for you). My new surgeons are with Memorial Sloan Kettering in New York and not only do they recommend this series of exercises, they even have brochures they pass out and classes. They are very simple: shoulders rolls (10 reps forward and back), arm circles (hold arms to the side, circle forward then backward 10 times each), make chicken wings and flap your arms (10x) and wall crawl (stand close to a wall and gently and slowly crawl your hands up the wall). You do these 5 times a day and it helps free and work the muscles that are affected by node dissections and MXs. Anyway I will see if I can find the link that someone posted -- which no doubt shows little pictures. Hell my first surgeon didn't even tell me about the lifelong risk of lymphedema I would face. With only 4 nodes removed, btw, you are not at much as risk as I am (with 17).
Anyway, it's just gentle stretching.
Cheers,
Lilah
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Actually I could not find the link I remembered seeing here but I am pretty sure it was this. These exercises are somewhat different than the ones in the brochure I got from Sloan Kettering -- although they too have the wall crawl and there is a little illustration -- but I suspect these will help in the same way the ones I'm doing are helping me. All are designed to stretch out affected muscle areas. From American Cancer Society website:
http://www.cancer.org/docroot/CRI/content/CRI_2_6x_Exercises_After_Breast_Surgery.asp?sitearea=
Or if the link doesn't work, just go to:
And type the word "exercise" into the search box.
Cheers,
Lilah
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Lilah ~ my surgeons are from Sloan as well. Dr. Sclafani did my MX. LOVE LOVE LOVE HER. I have my chemo at Sloan as well.
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Hello Ladies,
I was diagnosed in October with IDC - left breast. I had a lumpectomy and SNB yesterday. Thankfully the node was clear.
The BS also biopsied the rt breast, since a biopy showed atypical hyperplasia. I'm bundled on the sofa with ice packs. I'm a little sore, but the discomfort is manageable. I have to shower, but I'm procrastinating - a little afraid of how my breast may look. I know that this is small in the scheme of things, and believe me, the girls are long past the perky age. Just happy to have this part done!0 -
C2will, I had the same procedure in early November and I was told not to take a bath for five days and when showering to make sure I don't get the site wet. I hope you feel better soon.
Well ladies I'm as frustrated as frustrated can be. I was diagnosed in October, then my problems began. I was sent to UCSF which is suppose to be a great cancer center, the doctor asked if I would participate in a research study, by doing this I would have state of the art information and treatment. I agreed and then when showing up for an appointment they forgot about me I sat all day asking if I was in the right place, they didn't know who the doctor was at first then said we have five with the same name sent me to another office. By the time they figured things out the doctor had left. I decided being a part of a research study wasn't for me. After the biopsied the lump and my lymph gland they couldn't find my results, I called and waited 10 days, the doctor who treated me said I've been looking for the results I will get back to you by the end of the day. Then I get an email saying she needs to find the pathologist who did my studies for they can't find them. Two days later my regular doctor calls with the news. Says that the oncologist office will see me tomorrow and their office will call me. She had not received the reports just spoke with the doctor who did my lump... My other doctors have called me and we discussed options but they said they wanted to speak with who would be treating me. I called an spoke with them time and time again regarding my situation no call backs. I then email my regular doctor and she said you should have seen someone by now, if they don't see you right away then call me immediately. I call the breast cancer center and the person I get says you can have surgery to remove breast the first week in January. I said why, what about seeing the oncologist, she says I'm just the scheduler. I say forget it, I think I'm dealing with the wrong place, wrong people. I sent my doctor a long email with more problems with them then listed above. No caring or understanding from anyone I talked to. The doctors I've seen were wonderful but front office, a nightmare. Never received any reports on my parameters, just that I have IDC. Now it's over a month. After speaking to my immunologist and arthritis specialist about their concerns, I think I need to find another cancer center. They have made me more upset and confused. My other doctors are worried about the lymph gland in my arm at elbow which it swollen like and egg, I'm worried about my liver and problems I have been having. What if all this didn't start in my breast?! With my Enbrel, it could have started in my liver etc, and moved. None of my questions are being answered. I'm the one who said to my doctors I think I have cancer, where they said? Let's start with my breast, I said. I couldn't feel a lump but was having pain in lymph gland under my arm and left breast. Heart doctor said my heart was fine and no clots ( I have anticardiolipid disease). He never said lets check for something else. My doctors said if you feel something is wrong in your body, you have never been wrong in 20 years. So they checked, and I was right. I have never cried or got upset over any surgery and I have had so many surgeries down to the bone, and in the bone. Never got upset over any diagnosis but this one has hit my emotional button. I have no patience for doctor offices that just don't care, I have been put in anaphylactic shock from being administered a wrong medication, had a surgeon do surgery on the wrong part of my hand, and I have accepted things and gone on. I can't take steroids because from years of high doses I got Glaucoma last year. But if you saw me you would never know I've been sick. However I can't take these mistakes. Maybe because I'm such a mother, and my breast are a symbol in my subconscious of womanhood. I don't know. My gut says, run from these people as fast as I can. Maybe they have mixed up your reports? I wrote this to my doctor saying can you double check that these are really my results from all the mistakes that are occurring. So I'm writing to you all out of sadness and confusion. Thanks for listening.
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Alicia -- it is so great to love your doctor, isn't it? I also love mine (Dr. Pusic and Dr. Capko). Got the pathology report on my breast today -- NO CANCER! I am so relieved.
M360 -- it does sound awful what you've been through and I don't blame you at all for wanting to go somewhere else. You should definitely GO! With all the illness you've had over the years, I assume you must have one doctor who has been treating you whom you do trust? If so, ask him/her for a referral (another one if he/she referred you here). You need and deserve better care.
Cheers,
Lilah
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Hi Carol,
Have you made it to the shower yet? I was put together with superglue and was told getting wet was no problem. The "glue" sealed the wound for weeks and I don't think it would have ever come off on its own... I finally scraped it off with a fingernail. But so glad to be able to shower normally right away.
M360... I am surprised at the mass confusion you have experienced. Just terrible. Maybe they are just too big. You must have access to other good facilities. I would start new elsewhere. Keep us in the loop... we want good care for you.
pam
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P12345 - The shower was refreshing - just what I needed. I'm feeling better as the day progresses.
M360 - You have to find medical care that takes care of YOU, in all ways.
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M360 ~ this is completely unacceptable care. NO pathology report ~ CRAZY. I would call a lawyer for freaking REAL. And immediately get myself to another Dr, and have testing done asap. Prayers for you.
LILAH ~ woo HOO NO CANCER ! Wonderful news, Congrats.
Hi Pam !
Hope you are well.Hugs to all !
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Hi All!!
M360 - I completely agree with all the other ladies... the care you have received where you have been going is completely unacceptable. I would definitely find another facility to go to and get another opinion and have retesting done for your own peace of mind.
Lilah - Congrats to you on No CANCER!!!
Alicia, Michele and Juanelle I hope all of your are doing well after your treatments. :=) Sending hugs and happy thoughts your way.
Hi Pam!!
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M360 - Hang in there. The whole thing sounds just awful and unacceptable. I have found a double-edged sword in the research world. The information you will receive is the latest and greatest. (Most of the time.) The bedside manner is a different story. My experience has been that they are so in their heads and their research, and have NO CLUE what you are feeling or going through. I felt like a subject, not a person. One doctor was so blunt and heartless with things that are hard to hear - I left his office in tears. I cried for two days. Perhaps you should hang in there if good things are coming of it. If it brings you down and scares you - YOU DON'T NEED IT. You have a big job ahead, and I hope you find a way to surround yourself with good doctors and lots of love. Stress on top of what you are already dealing with is NO DARNED GOOD. Sending you a big hug from Dallas. Hang in there, friend.
To all of you: smooches and hugs through the fiberoptics. Take good care of yourselves, shop less, drink more nog. Blessings to each and every one. XO, Mary
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Hi Ladies!
Just wanted to say Merry Christmas to you all. It has been a tough year on all of us and I wish ou all the very best the Holidays have to offer.
I don't have a whole lot to report. I called my onc about my breast swelling and tenderness and he wants to see me tomorrow. So, I get to visit my onc on Christmas Eve:) Other than that, not much else going on.
Wishing you all happiness and Hugs!
Jen
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