Class of 2009 - Sisters in the same time frame
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Carol, my Oncotype DX was 25. I think I could go either way, but I want to know that I threw everything at it. I have days where I still question my decision, but still on the other hand....
I have been reading everyone's posts and it does seem strange, that the doctors can have such differences on the amount and types of treatment. I was really shocked when I got my Oncotype Score and then I was thrown into all of this. I just know that I do not want to look back in 5 years and have a recurrence, then have to face it all over again. I also know that I can do all I can now and still have to go down that path later.
Juannelle
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Juanelle - Good luck starting chemo tomorrow!
Mary - Glad to hear you finished chemo--but not the reason. Am in your court that your SE's will reverse. In the meantime, it sounds like you'll have a lot on your mind with playing the waiting game. Rest, repair & grow that hair! (I liked your phrase.) We're here for you, girl!
Pam - I was so relieved when the med onc recommended rads instead of chemo first. I'll be 59 in a few weeks & have been in menopause for 3 years. The med onc said that if my tumor had been larger (mine was .9 cm) then he would probably have recommended chemo. Right now I'm very comfortable with the path I've chosen. I started on Femara last Wed. after finishing rads. Time will tell, I guess, but I don't get a do-over.
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I was diagnosed in March. Prior to that, I noticed dimpling in my right breast and it was shrinking. No family history. Of all the times for this diagnosis to occur---my daughter was 7 weeks away from her wedding day and sitting for her CPA exams. I decided not to tell her until after her honeymoon, and keeping it secret nearly killed me. I hid the drains well from 2 surgeries and luckily had selected a mother dress that did not reveal my armpit.
I went to a NCI hospital for treatment and did DD AC x 4, and 1 Taxol----and then I quit. The taxol made every bone and muscle incredibly painful, plus I was already feeling like the wicked witch from the Wizard of Oz--"I'm melting....". Emotionally, I was spent and just could not take anymore. I also was not prepared for the feelings of isolation--so many people don't know what to say to you, so they stay away. Finished 33 rads yesterday and will start Arimidex next week.
When I was diagnosed, they gave me a notebook entitled "The Journey". I did not want to go on this journey and so I went, kicking and screaming. Although very grateful for the treatment, it seems so very barbaric. Did it work? Who knows, time will tell. I told my 1st med onc when I stopped the Taxol that this was all a crap shoot really.
This is my first day of not having to take some kind of treatment....feels weird. It has been a long 8 months. The first line in that "Journey" notebook says, "your life will be forever changed"--fought that too, but now know that yes, I will not ever be the same.
Good luck to all of us!
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Tsotls,
Thank you for sharing... It has me sitting here in tears. Thinking of everyone who is doing battle at whatever stage of it we are in, waiting for new boobies, rads, chemo, meds, etc. It is just so true "your life will be forever changed." I start chemo sometime in November and am so scared all I can do is cry lately. Thank god for all of you wonderful women !
Hugs...
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Kookiesmom, I'm so sorry you've been through so much, including losing your mom to bc. I can understand your fears. Was your "baby tumor" in situ? Do you know your mom's dx? Maybe her tumor was invasive? I hope things work out well for you.
Tsotls, my heart aches for you, too. I totally agree that bc tx can be barbaric and destructive as well as curative. I hope you can take Arimidex and tolerate the SEs. You might want to join the Arimidex forum.
Juannelle, if my oncotype no. had come in at 25, my bc dr. would have wanted me to take chemo, too. She told me ahead of time that with a "mid" or "mid-high" no., she would recommend 4 treatments but not the heavy-duty chemo. I forget what the tx were because all my brain cells were engaged in the plea of "no chemo, please!" Before the oncotype test came into being, my bc dr. recommended chemo for women with invasive tumors larger than 8 mm. That would have included me.
There are so many differences in tx that I learn about on this website. Some bc drs. skip the SNB for women with small tumors in situ. Other drs. do the SNB. There is definitely a "crap shoot" element in our bc journey. The best we can hope is to achieve a "new reality" that enables us to go on with life and enjoy the blessings we may once have taken for granted.
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This game we are playing is really a crap shoot, you never know which bucket you are going to be in. I was hoping for a low oncotype score, but ended up in the wrong bucket. I hope it improves my chances of no recurrence, so I will be in the good bucket.
I am at the chemo center now, and everything as gone like clockwork. I brought way too much junk, but that is just what I do.
Juannelle
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Juanelle,
It must be very crowded in your treatment room as we are all huddled around you right now in support. Kind of like in that weird movie "Truly, Madly, Deeply." Except we are less strange than those "spirits."
Wishing you an easy day...Tsotis,
How brave of you to keep your DX private. I don't know that I could have done it. Of course you did not want to detract from your daughter's special day... what a great mom you are. I get so much comfort from the women on this site that it is easier to accept the isolation I feel from people I encounter in real life. Yesterday I was having lunch with "girlfriends" who all know my DX. Someone began talking about an experience at a local mammogram screening facility. Lots of discussion, complaints and laughs. So I told a short story about how I did not like sitting in the radiation waiting room since, to my surprise, there were male patients, unlike the all-female atmosphere at mammogram screening. Talk about a conversation killer! NO ONE said anything. So back to talking about sex or religion or politics... much less sensitive, I guess.
BTW... Happy Birthday to me today
Bet you know what I will be wishing for!Pam
Pam
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Best of luck to you today Juanelle. I will be thinking of you.
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pj, Have a Good One!!! Many Happy Returns.
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Juanelle: Really hoping all goes well with your chemo today! Will be thinking of you in the days ahead... keep us posted on how you're doing.
Tsotls: You are amazing! What a gift to your daughter - I don't know how you did it. It's incredible how we women protect our young - even when they're not so young - even as we bear such health burdens.
Pam, happy birthday to you. Hope all your wishes come true!
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Happy Birthday, Pam! Shame on your "girlfriends" for being girls and not mature women.
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Happy Birthday, Pam! Hope you have a piece of cake and skip around the room today - this is one to CELEBRATE.
Oh, Juanelle, we're sending you lots of love today. Laughing about you taking too much with you! Did the exact same thing. Now why was it I thought I'd need a socket wrench?
Kookiesmom - Sometimes, the tissue they remove is stored for a certain period of time. You might think about asking if an oncotype test is still possible. So sorry you have this worry on your shoulders. We're here for you.
Tsotls, congratulations on finishing chemo. Sounds like it was a trial, to say the least. You were one tough nut to hold off telling your daughter. Wow. And all of this IS isolating - cancer scares people out of their wits. That's why they do such goofy things. Glad you will have time to soak up the sun for a while. From the moment of diagnosis, we have to rush rush rush through the hardest decisions of our lives, dash off to surgery, jump this hurdle, jump that hurdle - by the time it's over, we barely are able to grasp what we've been through. Sort it all aout and take good care of your self. Sending soo much love your way!
Thanks for the kind words, Nancy. How are you doing?
Alicia - thinking about you. How are things going in your world? Hang tough, you're going to get through this. In a way, it's good that you're crying. My doc advises patients to go ahead and just have these feelings when they arise. The sooner we deal with them, the sooner we're able to make progress. One of my nurses has been through breast cancer. She said she really had a day where she sat on the floor and let it out. After that, things got semi-normal again. Wishing the same for you.
Everyone else - hugs to you. Hope this weekend is kind and gentle. XO, Mary
Carole - I like what you said about enjoying blessings we may have once taken for granted.
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You put it right, CAROLE! I have not had a close friend get breast cancer. I hope I would have done a better job of supporting them. I wonder. I certainly have grown with this experience so I will charitably say that maybe I would not have done any better. :?
Thinking of you all and wishing good things for us.
Pam
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kookiesmom:
don't know how long your hospital saves your biopsy specimen or how long after it is viable for testing. But Genomic Health has a really good website and you could ask them or call them at 866-662-6897. They are the OncotypeDX company.
I am sorry you have been unable to take Tamoxifen. Arimidex appears not to have some of the more serious se's but more quality of life complaints. But there are many of us taking the drug successfully.
Pam
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Pam, Jan, Carol, Luah and Alicia, thanks for all your posts to me. I felt you all with me today.
It went very well and just like clock work. It did take about 4 1/2 hours to get through everything from start to finish. I guess that is what I can expect. I didn't have any bad reactions to anything. I have been drinking all day, but I am not going to the bathroom every hour. They didn't mention anything to me about that. I have learned so many things on this site. That I know will make my treatment easier.
I have to wait until Monday to get my Nuelasata shot on Monday. I am going to stay home next week and see how I do. From what the doctor was saying, it would probably hit me then and be like the flu.
Someone suggested eating a peanut butter sandwich as they cleaned the port and I tried it today and it worked, no smells or taste. I ate ice chips and drank lots of water while there.
I will keep you posted on how I feel each day.
Happy Birthday Pam
Hugs
Juannelle
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Juannelle,
So glad to hear from you and that everything went rather smoothly. I hope you are feeling ok. Big hugs ~~~~~~
Happy Birthday PAM !!
Thanks for the pep talk Mary... today was a day I just felt sorry for myself. I won't allow that too often !
Hugs to all you wonderful ladies..
Alicia
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Juanelle!!!
Remember how fearful you were about chemo? And now you sound so confident and strong! You are going to make it through this.
Pam
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Pam - Thanks for letting us know. We wouldn't have missed wishing you a very Happy Birthday. Sure hope it was spectacular!
Juannelle - Glad your first day is behind you & that the SE's don't prove to be too much. I've always heard that old age ain't for sissies, but it sounds like that applies to chemo as well. Hang tough! Hope you have a good weekend!
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Pam, the unknown is always scary. I can only hope that the rest of my treatments are as easy. I know I will make it, it is just going to be a long 3 months, then on to rads.
Juannelle
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Hugs, Juannelle. I'm proud of you!
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Thanks Carole, it has been a really long day and I woke up about 3:00 am this morning and couldn't go back to sleep. So, I thought I would get up and do some posting and couldn't get on the Internet. Boy, was that frustrating. I don't know what happened, but it is working this evening. I just hate it when I can't get on line.
I hope I can sleep tonight, I am really tired.
Juannelle
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Nancy, your dx and mine are so much alike, I notice that you did not do chemo, was that a personal choice? Did your doctor advise you against it? It is very interesting that we can be so close and the treatment be different.
How did you do through your rads? I worry about rads now, since I am doing chemo, I will go into them already fatigued and I think they will hit me harder. I probably need to not think of it that way, but it is hard not to try and look ahead at what is in front of you.
I understand the personal choice, it was very hard for me to make the decision to do chemo, I just wanted to know that I did all I could. I just hope that it is.
Hugs,
Juannelle
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Kookiesmom,
Sounds to me like you might want to seek a second opinion. Even if the next onc says the same thing, then you might feel some reassurance.
I thought there was another alternative drug other than tamoxifen, but maybe not. Did you have an Oncotype done to see what your risk of recurrance might be?
Hope you get some answers.
Kay
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Hello- I hope it's not to late to join in.
My dx was in Feb..I had dose dense (4 x a/c 4 x taxol) after each treatment I had a shot of neulasta.
I had a masectomy in July and no recon.
In August I had 33 treatments of rads. With 7 target areas.
I am finally feeling back to normal. Menatlly... My feet still hurt and I am still waiting to lose a toe nail. But I am not so angry all the time..maybe all the steriods are finally getting out of my system.
Anyway I have my appt. w/ my onc on Tuesday and I am stressing because I have no idea what is next. I know being triple neg there is not much I can do other than wait and see..
I guess my fear is that I am feeling fine and thats how I felt before I found the lump.
I have a strong family history of BC. Lost my Mother and Grandmother to it.
So I would really like to be the 1st in the family to kick its a$$ but I am worried that it will creep up on me again. Okay so maybe I am not alright mentally..
I just want to know what I am in for....
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Pam, Watercolor, magob, caroleh and if I forget someone sorry - thanks for your replies and advice. I do not remember my mom's exact dx only that she said it was early & small and she felt she would be fine if she didn't take anything else after she went off tamox. I called her onc. 2 weeks ago & was told her file had been put in storage. I told them I would pay to have it retrieved and explained my situation. I followed up yesterday and nurse said she is "still working on it" And that is why I did not use my mom's onc! His staff was pretty incompetent! I will haunt them til I get it however as I really do need to know. I am thinking if it is the same dx as mine I will get an ooph and start an AI. I don't think mentally I could handle just being tested and monitored til something shows up. I guess I have already convinced myself it will be back and that is probably not a good frame of mind to have. My grandmother had BC as well but her did not come back so maybe I will be like her. I will call the Genomic place and ask about the Oncotype test. Thanks for the number! I am thinking about a 2nd opinion.
Pam - I am a PJ who lives in FL too! When are we gonna cool off?!!!
Juanelle - best of luck in your treatments - hope they go by quickly with little or no SEs!
JustPayton - You are gonna kick its A$$ girl! I know what you mean about the bad gene pool. I have it too and it really makes me paranoid sometimes. That not knowing stuff can make ya crazy! Good luck at the dr. Tuesday.
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justpayton1, I totally get this hollow feeling about whats to come. I sat in the Rad Onc's office yesterday sobbing and sobbing while he and his nurse kept telling me how well I had been doing thru such a tough treatment process, keeping my humor and grace through it all, being so strong in the face of cancer, yadda...yadda...yadda.....But I said all the strength in the world is not keeping the idea out of my mind that none of this is going to work. I may be keeping up a good front for everyone about being strong, but I'm not so sure I believe me.
Friends like to remind me how well my sisters who are 15 years out from their BC have done. What they fail to realize is that both sisters were caught early, hardly stage 1, no node involvement. IT'S DIFFERENT SITTING OUT HERE IN STAGE 3 LAND!!!!!!! I'M TERRIFIED.
I am hoping that the further out from treatment the more at peace we'll become. Get back into life and spend less time fretting and more time living, but right now, that seems like a bigger battle than what we've been doing for the past 8 months. I don't think most people understand how overwhelming the mental piece of this process can be. So darlin', I wish you well and I hope that a time will come when you can look back at this stage and see how far you've come
Hugs, Mary 0 -
I'm 4 mos out from dx and 3 mos out from BMX/Recon. Last night I had my first "awkward" social encounter on this bc journey. Dh and I went to our club to meet some golf friends for dinner. When we entered the lounge, I was greeted by three long-time tennis friends seated with their husbands. We don't see each other often any more since I switched to golf. But we've played many tennis matches on the same league team and been to lunch together many times. They immediately began to apologize for not having called or sent me a card when they heard about my bc. I told them they were absolved from feeling guilty because I have often been remiss myself in the same way, thinking of what I should do and not following through.
Still the encounter didn't feel good, and that's a shame. What strikes me as odd is how often people who see me out say, "You look so good!" in this tone of marveling. I just look like me! No better or no worse.
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Hi ladies,
Just checking out this spot...
Hi there one-L...glad to see your chemo went well yesterday.
Michele
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This coming Tuesday will be 4 weeks since my BL MAX. I had a friend ask me yesterday when she saw me out to lunch with a girlfriend. HI, is this your first time out since your surgery??? I had surgery I'm not a recluse! I guess people say the darndest things ~
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JustmeAlicia - People do manage to say the strangest things. For instance, I don't know how many people say to me, "How do you still have your hair?" I had rads, not chemo; they weren't radiating my head. But you know, until you go through it, you're really not aware of these things.
Juannelle - To answer your question, my med onc said he felt very comfortable recommending rads followed by 5 years of an AI for me--even though my Oncotype score was on the upper end of the intermediate area--instead of chemo first. There were a number of things he was basing his opinion on, but I think one of the main ones was that this little tumor was something that they've been watching by mammo for the past 3 years. I went every 6 mos. for about 1-1/2 yrs at first for spot compressions & then every year since. In May was my first digital mammo, & my surgeon asked the radiologist to go back & pull all of the previous ones & compare them--even though he said comparing digital to analog was like comparing apples to oranges. The radiologist came back with the report that the tiny tumor had just changed very slightly. The surgeon was so sure it was B9 & just suggested doing a lumpectomy to go ahead & get rid of it, so we wouldn't have to watch it anymore. When the pathology came back, I think he was more shocked than I was that it was IDC. It was only about 1/3 in., & he told me that it would have had to have been about 3 in. in a breast my size for it to have been felt. Lucky, lucky, lucky was all I felt when he told me. He then wanted to do an SNB, which came back negative. So when the med onc looked at all the facts & felt so comfortable recommending rads instead of chemo first, I went along. I still feel very comfortable with my decision, but time will tell. I guess if they hadn't been watching it for several years, then my decision might have been different. The 7 weeks of radiation for me really wasn't too bad. The only bad burn I got was under my breast the last 2 weeks. They told me it would probably do that since my breasts are large. (Of course, they went south years ago.) The last of the open burn just healed up yesterday. My nipple started getting red & rough-looking within the first week of rads, but I just kept moisturizing everything like crazy & the rad onc prescribed Biafine right away. By the next week's ck with her, it looked a lot better. It started turning brown & crusty & was pretty tender even with all the cream I was putting on it but never got infected. It started getting a lot better as soon as I started the boosts, & they were no longer radiating that area. She prescribed Silvadene when the skin under my breast started blistering so bad & had me get nonadherent Telfa pads, which I kept on with my sports bras. I wore them all of the time while the open burns were healing. I really wasn't very uncomfortable that way. It's taken right at 3 weeks for the burns to completely heal where they're not raw anymore. She said she recommends her larger-breasted patients to massage the breast several x a day for several weeks after rads. It's only been 1-1/2 weeks since she told me this, but now I can't remember the reason for it. All I know is that I'm going to keep doing it. Good luck with your chemo, & I hope that you have few SE's with rads. Right now, just take one step at a time!
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