CALLING ALL STAGE I SISTERS
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Because if they tell us the truth we may not drink the kool-aid without asking any questions and they might have to admit that it's a crapshoot at best.
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Hi everyone,
I just wanted to send an update as to what is going on with me as I have been frequenting the boards only on my phone to read everyone's posts. I hope everyone is doing well and you are all in my thoughts and prayers!
I went for a second opinion at Dana Farber Cancer Insititute in Boston, MA yesterday. I got some expected news and some "good" news. After I was diagnosed, I looked into freezing my eggs because I was nervous that I would be thrust into immediate menopause (mind you I am only 23). However, I would like to note that that was the last thing I wanted to do. I went so far as having the exam, getting my blood drawn, and even getting the medications (my insurance has covered a majority of everything so I didn't spend a ridiculous amount of money or anything). When I discussed this with the oncologist there she was like, I don't think that is overly necessary. To be honest, I kind of needed someone to tell me; "hey, doing this isn't essential" to kind of give me the pass NOT to do it. I kept getting roadblocks with regards to the whole procedure. My period wouldn't come on time, I had appointments that kept needing to be rescheduled and things that got in the way. I would like to believe that this is God just kind of saying the same thing...again that is what I would like to believe. It was the one thing through all of this that I was not comfortable with...anything else God wanted to throw at me....surgery, chemo, etc....I could get through it. This, I really did not want to do. So I feel better to not be doing it
.Then I got news I had expected. Although the results of my oncotype dx score aren't back, she is recommending I go through chemotherapy. I had made it clear that the one thing I am not comfortable with is an axillary lymphnode dissection (if I could avoid any risks of LE I will...I am too young to live with a swollen arm). She had said that it is probably not beneficial to me as it would only provide more information of how far the disease has spread. But if I am comfortable with doing chemotherapy then it will probably not have to be an option. I want this thing out of me, so I will probably go the toughest route with regards to chemo...doing a dose-dense option of AC-T then Tamoxifen. She told me she wouldn't even have sent my tissue for the oncotype dx test as my tumor is so small that the test could possibly read a false negative. My invasive tumor was less than 1 cm when she was telling me they typically need 2cm or larger to give a result she personally would be comfortable with for assessment. So she is basically saying that I shouldn't even go for the oncotype test. Especially due to the lymphatic involment (even though it is just isolated tumor cells) she would suggest moving forward with chemo since we do not know its extent of spread. I want to discuss this with my medical oncologist back home (she is the one who suggested the second opinion since she is not a breast oncologist specifically) and see her thoughts as I really like her and value her opinion.
If we move forward, then I will need to schedule the surgery for the cath port then I will start chemo in the next couple of weeks. I am nervous and have already decided that if I am on the Adriamycin then I will shave my head before treatment starts. In a large majority of cases, hair loss can happen suddenly. I will not wake up with my hair sitting on my pillow or start grabbing fistfuls in the shower. That I have decided I could not handle emotionally....like I couldnt handle waking up flat and it is why I chose immediate reconstruction.
I know I am strong and can handle all of this....I am just nervous for the se's. I know that I have a terrible gag reflex and I get nauseous easily so that may be something that will only be worsened by chemo.
That is about it for me. I am just trying to figure out everything and get moving with regards to my treatment and whatnot. Again, all of you ladies are in my thoughts and prayers
*Many hugs*0 -
Thanks so much! I will check there too. I am doing much better today. A little neosporin goes a long way!
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Justegan, you had some tough decisions there. But you are on your way to tx, so one step at a time. Much love.
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Just took my first dose of Tamoxifen. On to the next phase.
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Justegan, Check out some of the chemo threads. I think they have good drugs for nausea today. Best wishes for a good outcome.
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Justegan---if you are not totally happy with Dana Farber I would go for another opinion......I had many mistakes but finally dr.#4 was it for me....I too went to a big dr.The head of Sloane Kettering and he did the wrong thing....just because they are famous doesnt mean shit....
Ask lots of questions on here....The sistas know!!!!!And go on to other threads and do your homework!!!
I wish you only the very best....prayers goin out right now.
hugggggggggggs K
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Justegan, nausea/vomiting were the things that most freaked me about doing chemo (I HATE TO THROW UP!!!!!!!) but other than a passing moment the 1st morning after the 1st treatment, I must say I had no problems with nausea. Just take the medications you get Rx'd faithfully & you should be fine.
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Hello all...so many pages, I guess it has been that long...all of you in my thoughts and prayers (that is when I manage to pull me head out of my ***)....know I care, truly truly do...to those I have known since I first logged in and to those who are new...
HUGE HUGS
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Hi Annette, It is so good to see you here. I have not been around much myself lately. That time of the year for those 6-month doctor appts - just had my labs done today, see the onc in two weeks with mamm to follow middle Oct. I so hate this time of year.
I am so saddened to see the new gals here. And so young........ A warm welcome to all of the new sisters.
♥♥
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Hi, Annette. It is so time consuming to read all the posts, that sometimes it is day s betwwen my posts. I try to catch up and find out later that I miss something important.
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justegan glad you got the 2nd opinion. Those have always made me feel better about the decision that I have made on this journey. I did not do chemo so I can't help you out there. Good luck. I like the idea of taking control and shaving your head first. I think I would do that as well.
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Been lookin for Val and annette for quite some time now.....
Ya gotta show up
Grannydukes worries about all of you.
Welcome home sistas.
Where is Sheila????????
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Interesting, auntie!
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Granny, Annette posted a few days ago. Can't remember which thread (surprise surprise).
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Annette posted on this thread....just scroll up a bit. Hey Annette!!!
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Sheila is around, she's a social butterfly!
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Has anyone has a PET or bone scan to check for cancer cells in bones? My BS said no need. I need opinions
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Hi all, I've been on the site for a while but never in this thread. I see some ladies from my other boards though, so HELLO!
I'm wanting to hear from any of you stage 1 sisters that have had treatment other than surgery. I am 33 years old and as you can see in my signature and treatment below, I had IDC, Grade 2, Stage 1 and DCIS Grade 3 no lymph involvement with a DMX with TE on Aug 31. My Onco score is 24 and my Oncologist is recommending 6 rounds of chemo (1 every 3 weeks for a total of 18 weeks) and 10 years hormone therapy...5 of which will be Tamoxafen. I was ER/PR+....ER was 80%.
Thoughts on the recommended treatment would be appreciated.
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Mrs Cich, From all that I have read and from the stories of all the sisters your onchologists treatment plan sounds right on. You are young and want to be aggressive in fighting this d..n disease. Good luck.
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bgail84, My BS did a bone scan and CT before surgery. He wanted to be sure that the breast was all we were dealing with.Since you have already had surgery and rads with no lymph involvement the disease shouldn't have spread, hence no need for bone or PET. There is no guarantee but unless you develop symptoms warrenting a bone or PET you are probably fine.
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Thanks ptdreamers! My BS never suggested a scan and CT before surgery.
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bgail84, I haven't had a bone scan or a cat scan. I think they often don't do that for stage 1. I'm 71 which may have entered into the decision. If I were very young, I think they might have recommended it.
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Kristie, I had a onco score of 19 and no chemo.
I am also 99% ER/PR responsive so after radiation it's Tamoxifen for me. Thanks!
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Got my BRCA results. It's negative for me carrying the BC gene. The girls don't have to worry now!!!! It's not hereditary!!!!!
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MrsCich - Good to see you on this thread! Great news about the BRCA results.
I'm on Arimidex for 5 years. My Oncotype DX was 18 (borderline) and I opted out of chemo, but it was a tough decision. If I was 33 like you and the Oncotype teetered into the intermediate range I don't think I would hesitate to go for chemo. From what I read here it's not unusual for the MO to recommend chemo simply based on age even without the Oncotype results. Your plan sounds reasonable.
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bgail84 - This seems to be another one of those areas that seems to differ so much from MO to MO or from health system to health system. When I asked about getting a PET scan during treatment planning my MO said it's no longer recommended to expose women to the radiation of a PET or CT or bone scan unless they are symptomatic or bloodwork abnormal, etc. Also, of course, depends on the type, stage, and grade of tumor. So, no scans for me (gulp)....0
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bgail84 - This seems to be another one of those areas that seems to differ so much from MO to MO or from health system to health system. When I asked about getting a PET scan during treatment planning my MO said it's no longer recommended to expose women to the radiation of a PET or CT or bone scan unless they are symptomatic or bloodwork abnormal, etc. Also, of course, depends on the type, stage, and grade of tumor. So, no scans for me (gulp)....0
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MrsCich - Good to see you on this thread! Great news about the BRCA results.
I'm on Arimidex for 5 years. My Oncotype DX was 18 (borderline) and I opted out of chemo, but it was a tough decision. If I was 33 like you and the Oncotype teetered into the intermediate range I don't think I would hesitate to go for chemo. From what I read here it's not unusual for the MO to recommend chemo simply based on age even without the Oncotype results. Your plan sounds reasonable.
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Hi bgail84 ..... I had a bone scan and a CT scan before starting treatment.
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