2010 Sisters
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Hi grannydukes, There is a law that allows you copies of any of your medical records, no questions asked. It has been a law since 1976. So stand your ground!!!!
Peace and laughter,
cheryl
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hi everyone and
designermom -- I went to rad onco and they had my onco dx results.They all stick up for each other and when I put them on the spot about knowing they were faxed last week there was nothing but excuses.I'm too stressed and tired to deal with it.
My oncotype is 20. All 3 of my doctors expected it to be very low if not zero. it goes to show you ,they don't really know and should not say anything if they aren't definite because it was a shock to them what do they think it did to me. At my last appt with my med onc he said if I was in the gray area he would recommend chemo so looks like thats what it will be.
I know 20 isnot much in the gray area but I'm going to go with my gut and talk to the doc about going ahead with the chemo.It seems all along the docs have not been as sure as they thought.
Any thoughts out there?would love to hear them.
Thanks
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hello inthepink49- I agree that no one should say anything until they know! I've been like a yo yo for my Onc. One day positive the next day negative and a week later back to positive (HER2)
Think long and deep, if you pray, pray on it and then go with your gut. I too am in the gray area, again for the HER2, and after a couple of weeks I know it's best for me to go on with the Herceptin. Who knows on Friday what the new Onc will tell me.....
I feel like a lot of the other ladies here, obviously no one wants to go through chemo, but down the road if we don't do it now and it comes back..... I want to be able to look back and say I did everything I could.
In the end it has to be what you want to do. You don't need to decide today, take a few days.
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inthepink- Great advice from jag. Unfortunately, no one can make these hard decisions but you. Tune in to your gut, make your decision and don't look back. Your intutition will lead you to the right decision. I truly believe it is our ancient, protective mechanism. Just like animals can sense danger, you can sense what will cure you of this monster. I'm glad you got your Oncotype score. One more piece of the puzzle. Praying for all of us.0
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inthepink49:
I was hoping for a lower rs score on the oncotype as well. On the second page of the report, there is a statistic on the percent that chemo would lower your % of recurrence. For me, with a score of 19 and an average chance of recurrence at 12% (9-15%), chemo would have lowered that 12 to 9 (6-12%). I felt comfortable that with a grade I cancer, the negative side effects of chemo didn't make it worth it for me to do chemo for a potential 3% decrease. In the discussion, my age and perimenopausal-->menopausal (late in my family) came into play. If I'd been younger, it would have been a more difficult decision. All my stats below. If you'd like to talk, send me a PM.
Talk with your oncologist about the oncotype dx report on relative benfits of chemo. Trust your intuition as our sisters above have counseled. Then, go on with your life.
Good luck and God bless us all.
PS Please follow the advice of so many here and get a copy of all of your reports and test results. Procedure and operative reports too.
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thanks so much guys,I think I have finally become comfortable with making a decision.I will feel even more secure when I am walking out of my onc office on thursday knowing I will have a treatment plan in the works.
I have a history of high blood pressure which has been under control until lately.I 'm sure it wil start declining once the decision is etched in stone.Until then we may have to up those meds.Wh at a vicious circle.I do think aweight will be lifted off my shoulders even with chemo in the future.
I will continue keep everyone in my prayers and pink hugs to all.
Goodnight
Vickie
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Hello 2010 Sistas,
Thank you so much for your comfort and support of one another. Have you checked out www.cancermath.net? Plug your numbers in and see, it gives you an idea about treatment and it's rate of success.
Good luck and God Bless!
Paula
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Iago: (((HUGS)))
Inthepink: I've said on here (not sure if this thread or another) that I'd rather be OVER treated than under treated. But that is my own personal feeling. If I can get a 3% benefit from something, I want that 3%. In fact, after doing research, talking to my doc and my family, I decided to not even have the Oncotype test. If I got a high number, it would just scare me for the future. If I got a low number that said the benefit of chemo might be as low as 3% or so, I'd still want that 3%. So since it wasn't really going to impact my treatment decision as much as other factors (the biggest being that I was already node positive with a very small tumor), I decided to bite the bullet and go with chemo.
As others have said, look at all the variables, look at all the numbers, then decide what works for you and what you want as far as your particular lifestyle and goals. Once you decide, never look back. We can all second-guess ourselves so much we are basket cases! Good luck and let us know what you & the docs decide on.
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Good morning. I hope this find you well and hanging in. Though I realize how scary and horrid chemo treatments can seem, they are very much manageable. If it helps at all, when making my decision to proceed with chemo, I just needed to think how fabulous it would be to NEVER be back here again. I know there is no 100% guarantee, but, if I can make that even a bit more of a reality for myself, I am doing it!
I am young (57) healthy and fighting like mad for my life (not to mention the quality of that life)
take good care and just breathe. . .
Teklya
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Hi everyone, As a nurse I can tell you, your best advocate is you. It isn't that the doctors don't care but are overwhelmed due to the increasing numbers of diagnosed breast cancers. And the numbers are getting younger. This isn't an excuse but a reminder, fight and be informed. Demand that the communication between your doctors become a 3-way or 4-way conversation. Put your nurse navigator in the cancer center on speed dial. Remember the squeaky wheel gets greased. This is your life, your battle and most importantly, your legal right!!!
I am loud and demanding and proud of it!!
Peace and laughter to each of you,
Cheryl
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Hey Cathy (and other beautiful bald sisters)!
I have been bald for about 3 months now (finished chemo on July 1st and now have some nice fuzzy but very short hair.) I ordered a wig but never once wore it.
I did have great success with the beau beau scarves sold over the internet. They are pre-tied so all you have to do is slip them over your head. They are a little pricey - maybe you can order one and then make some of your own. But I have a couple - and wear them whenever I am out. They are almost fashionable. I started some classes this week and in a class of 20 students FOUR of the other students came up to me after class and asked where I got the head scarf because they had family members going through chemo. The web site is 4women.com.
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I 2nd the success of those beaubeau scarves--I bought a couple and love them. I love them more than my wig---esp in hot temp. They have great designs and are really easy--no need to tie them. They definitely work for me aswell.
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Hi 2010 Sisters - I don't post here often but I read what's going on. Just want to say I'm thinking of you and you are all in my prayers every day!! Wishing the best for all of us going through this.
I will be half way through chemo in 14 days! What was so terrifying at the beginning has turned out to be very doable. Medicine has come a long way! I'm a faither and a fighter, so every day I'm praying to God and rowing my boat to shore. We will get through this!
To my beautiful 2010 Sisters, take care of yourselves, be well and have as much fun as possible!!!
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ladyinBama and all
I have felt the same way about doing anything and everything at first even for 3% but then had my first onco appt and everyone figured my score would be so low so then I gave up the thought of chemo and moved on.Now I.m back to feeling the same way again.I also had 1 node that had tumor cells but with some testing now adays if they don't meet some standards they consider them neg.I have read some studies that some docs don't agree so that is always in the back of my mind. i think chemo will ease my mind.
Tomorrow at this time I will know for sure and can't wait. My blood pressure is rising.
Have a wonderful night!
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inthepink49 - please keep us posted!
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I have a question on TE's. Can they be filled while doing chemo. My PS wanted to wait until after chemo and do some fills before radiation and then finish after radiation but now I am hoping to have my port removed during the two weeks off from chemo befor radiation so not sure how that will work. I was thinking of asking my PS if he could start filling the TE while I am doing chemo but not sure if that is a "norm" or not. Thanks for any input.
Jen
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Hey there ladies,
Tomorrow is BMX surgery for me. Chemo is not a decision I have the make since I have no choice. I will be having chemo that will start on the 13th. Daughters flew in this evening from across the country. Hope everyone has a good evening. I will be posting as soon as I can after surgery to let you all know how it went.
Joy and blessings,
Amy Jo
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Hey there ladies,
Tomorrow is BMX surgery for me. Chemo is not a decision I have the make since I have no choice. I will be having chemo that will start on the 13th. Daughters flew in this evening from across the country. Hope everyone has a good evening. I will be posting as soon as I can after surgery to let you all know how it went.
Joy and blessings,
Amy Jo
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amyjo-You are so positive, With your faith and strong family, you are going to get through this beautifully. I will be praying for you and I know prayers are answered. I am so glad your loving family is right by your side. We will all be right here when you surface.0
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amyjo-->I'll be thinking about you, and praying! Hope all goes well! Glad you have your family with you.
Hugs!
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amyjo- Stay strong, stay positive and lean on your family. You give me strength! Keep us posted when you feel up to it. Sending love your way.....
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amyjo
I pray everyday for all of us but will say an extra special one for you. You are so lucky to have your family with you and that is what its all about.!!
God Bless:)
Vickie
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Amyjo...prayers going your way today sista.Thank GOD you have your family to support you.please keep us posted.
girls how about a group huggggggggggggggggggggg...feel it yet????????
God bless
K
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AmyJo: I said a prayer for you too when I read you were having surgery today. I had a BMX in July and it all went fine. I hope yours goes smoothly too.
Jen: There's a great thread on here about reconstruction and TEs (I can't remember the exact name, Exchange City?); but I'm sure someone on one of the reconstruction threads could answer your question. My PS said I didn't have to have another fill, that he could use the size implant he wanted to use with where I'm at. I was glad for that, especially after I saw the syringe he was going to do the fill with!
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LadinBama - thanks for the info. I will check it out.
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Hi Ladies,
Haven't been here in a few days, so I'm not caught up on the latest. I had my first A/C chemo yesterday. So far so good; minimal nausea, no vomiting, normal appetite, and slept okay. The anti-nausea meds they have these days are incredible and doing the trick.
Will try to read back and catch up. Hope everyone is doing okay.
Kathy
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Kathy, good to hear from you and that you are faring OK so far on chemo. Hang in there and keep taking the meds. Amyjo - prayers for you. GD hugs back at ya. Beanius, congrats on 1/2 way! Soxfan - one foot in front of the other.
INthepink, any word yet?
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thanks for asking. it has been a long day. I was surprised at how good things went.(if thats possible)My onco doc did recommend chemo so that wasn't a surprise but all that is required threw me a little. Don't know the exact drugs off hand ,he gave me all sorts of papers on it all.I do know it will be 6 sessions over an 18 week time.4 for one med and 2 another.Plus steroids the day before each session,the day of and day after. I guess I remember it all as I,m doing it.
I have to see a surgeon next week about a port and hopefully start on the 14th after getting bloodwork done. This all depends on the outcome of my MRI I am having on tues. If its good we can continue. If not Inwill need biopsy first.We doubt that but it is a repeat MRI from a few weeks ago. They are hoping what they saw was post surgical healing. All I know is I have alot of appts. coming up next week to get the show on the road.
He did put me back on my blood pressure meds because he says we need to get it down. Good Luck with that!.
So that was my day but I'm glad I have a plan now and he was so compassionate which made it much easier.
I'm going to try and get some sleep and I 'll check in with you all tomorrow.
Hugs to all!
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Hi Sisters:
I met with my onco yesterday and awaiting more test results as my bone scan showed "spots". Now we need to know what the spots are. Likely it could just be arthritis. Trying not to freak out. Of course it always happens before a long w/e. If all goes well the plan is to start chemo around mid month Sept. after getting a pic line put in. I see I'm not alone starting soon as many of you sisters will be also. Praying for us all. Good Luck sisters!
Also thanks for the tips for us bald sisters. They told me it is 100% that I will lose my hair. ughhh.
Cathy
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Hi tryn2staycalm,
I know how you feel. I start chemo next week then when that is completed, the rads will start for 7 weeks every day. As for the freak out, I did that yesterday after leaving the surgeon. I had one of the drains removed, but the other drain has to stay in another 3 to 4 days, so I was feeling sorry for my self. Then he suggested genetic testing due to my family history with breast cancer and endocrine cancers. Freak out session felt great!
So when you need to freak out, do so, we all have them. But remember your sisters here are enclosing you with arms of love and prayers!
Remember, peace and laughter with a littlen boo hoo is good for the soul. Thank you sisters.
Cheryl
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