2010 Sisters
Comments
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Lady Madonna and Granny: Sorry for the misinformation. It is proof that you need to be sure and check out anything you read on the forums for yourself. I just had DCIS on the brain.
I got my chemo start date today, it'll be a week from today, Aug. 31. FECx3, then taxol x3 (a change from taxotere since I expressed concerns with taxotere and the doc was ok with the change). We also talked about the oncotype dx test. He said he'd do it if I wanted it but we talked it out and it really doesn't much matter to me what score I have. With a positive lymph node, which means this sneaky stuff was on the move, I am going to do chemo no matter what to give myself the best chance of beating this. It is a personal decision for each person and I've asked my doctor to be aggressive in treatment. If anybody has any tips to share about FEC, please PM me.
Welcome to all the new ladies and Congrats on the clean scans
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BarbaraA - Your so right regarding the being asleep for the SNB and also about getting used to the way it will be for the rest of our lives. Our lives are changed forever. Always with the hint of what if, but not wanting to be a pessimist I rather concentrate on the positives. Thank god for the treatments and the "good doctors" and the diagnostics available and the friendships and the positives of sites like this one. To think if someone had BC 50 years ago it was a much different story. I keep seeing the good in people and that is a positive for sure. We battle it together.
Cathy
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Here in the US, I think it is customary to at least have twilight sedation for SNB. I am wondering if some of these BS who do it under local are not affiliated with a hospital/anesthesiologist? Perhaps they benefit more financially by doing them in-office without anesthesia? If any of you need SNB or AND, I would get a second opinion from another BS if yours wants to do it under local. It just doesn't sound right.
On another topic. Drains. I am so surprised so many of you have had issues with drains, infections in drains etc... I had a lumpectomy and SNB, no drain, perfect and quick healing. I then had to have another surgery to remove more nodes, again no drain, beautiful, quick healing. After the AND I did have to go twice to remove fluid from incision (5 minutes in office, couldn't even feel it). Yesterday I had a followup with my BS and asked her why so many are still using drains. She said she does not use them, however she ends up seeing a lot of patients from other surgeons and treating drain problems and infections. I am SO lucky my surgeon is on top of the newest thinking. Not only is she a master at what she does, she is so nice. If any of you are facing sugery, please ask if the drain is necessary and point out it is not used by other BS.
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DesignerMom: I did not have SNB with local but I did a Lumpectomy. My BS is affiliated with the cancer center for my region. She did not do it in her office - it was done at the same hosptial that I had the SNB done with an anesthesiologist. Her reason was due to me being an insulin dependant diabetic (could go into a low due to fasting) along with other health issues it was safer for me. As it turned out it was the wrong decision but she did not think it was as large or as deep as it was as all the tests said 1.4cm vs 5 cm. It may not have been as bad an expeirence had it been what she thought - easier to freeze and take out. As for a SNB she told me that it would not be able to be done under local. Not that I would have anyways. Not sure why the other gal had SNB with local - just cut my arm off - I know what she means. I feel for her "ouch".
Cathy
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thank you everyone for all your concerns.i decided to take my skinny ass over to dr#1 breast center and demand my records.he screwed up and my dr#3 and onc.wants to see what he did wrong.also er+ is not in my path report.he only verbally told me.I went to sleep for both surgeries and i will go to sleep for #3 surgery.but this could all have been done in ONE surgery.
its nice to know i had the #10 dr. in America doing my surgery..GRRRRRRRRRRR.
luv you sistas.God bless
K
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grannydukes-Good for you going to get your records. Take them to your new doctors and they will help you clarify everything. The Pathology report is very complicated (I still don't understand all). Take notes as they tell you. Ask them to slow down and repeat. Then you can research things on your own later. Good luck!0
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DesignerM
I didn't have a drain either. I did have to go to the dr office three times for him to do a needle aspiration of the fluid build-up. If you think about it. The lymph nodes are supposed to drain the toxic "stuff" into the lymphatic system. I can see how things would need to be drained if this is the case. Just thinking out loud. I guess I need to read more on the lymphatic system.
Welcome to the new ladies.... you're in a great forum!
Blessings to all.
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Well, the more research I do on the various pathology "markers" gives me more peace about deciding to do chemo. My Ki-67 score was 37% - anything over 20% is considered high and therefore aggressive. My pathology report also mentions comedo necrosis, and cribriform characteristics. Comedo necrosis typically refers to cells dying within the ductal structure; they die because they deplete the blood supply, and then basically clog the duct. Cribriform refers to the tumor's appearance as having holes in it, like tiny swiss cheese. So basically, I had a blood-sucking glob of crap in my boob that I am glad to have out, and chemo will take care of any busy cells that were on the move.
I'm sort of statistic-overwhelmed today. Not sure why. Last night I saw 3 different postings on the Stage IV threads of ladies passing in the last few days; really saddened me that even though many of us are "lucky" to "only" have early stage cancer, there are still so many who succumb after such a battle.
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Hi everyone, Well Thursday is my date with surgery, L breast radical mast and L axillary node dissection. Remember to take each day as it comes.
Peace and laughter to all,
Cheryl
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CherylQ - Just wanted to wish you the best of luck and lots of healing for your surgery on Thursday. I hope it is all successful and that there are no surprises!
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Best wishes Cheryl. I will be out of town but wanted to give you (((HUGS))))).
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Thoughts are with you Cheryl.
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Anna068 and DesignerMom
Thanks for the information. I went to see my onco and he sat down with me to go over my path report. What a great dr. I had no appointment and I saw him within 15 mins of walking in the door!
I am ER+, PR-, HER-2 neu negative. Mass measures 3 x 3 cm, nuclear grade 2, lymph nodes on right and left were measured 2 cm. CT scan of chest, abdomen, and pelvis show metastatic disease to the liver and tiny nodules were found in the left lung base. Also mixed lytic and sclerotic changes in the thoracic skeleton, suspicious for metastatic disease. Bone scan showed diffuse abnormal uptake within spine, ribs and pelvis concerning for osseous metastatic disease.
I had a liver biopsy today. Started out it was supposed to be done as a CT guided and wound up being sonogram guided and what was supposed to be about 45 minutes was 3 hours. What pain - it was hard to breath and hurt even more to laugh. Still hurts when I move. Maybe tomorrow will be better. I have a PET scan tomorrow morning and a CT brain scan on Thursday. Friday I see the PS and do some pre-surgery testing and the hospital.
I will be having 5-6 weeks of rads then chemo. I have already started on Femara. Husband is trying to get me to eat something so ice cream sounds good for this hot muggy evening.
Glad to hear about the clean scans. Hope everyone gets some good news tomorrow. Praying and hugging all my sistas.
Joy and blessings,
Amy Jo
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Cheryl: Good luck, I'll keep you in my prayers.
AmyJo: Prayers with you too. Go eat a BIG bowl of icecream. Sounds good, I think I'll go get some too. It's hot here in Alabama.
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Amy Jo- I SO admire your strength and spirit! To go from living a normal life to this kind of diagnosis must just be unthinkable. However, here you are, sounding strong and determined and even updating your new forum friends. My chemo nurse told me that after decades of working with cancer patients she has consistently seen the "faithers" and "fighters" do the best. I think you have those two catagories covered! You will remain in my prayers.
Can anyone enlighten me what a ki-67 score is? My Onc has never mentioned it.
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AmyJo--> wow! That's a lot of information you have to digest. I'll keep you in my prayers! Enjoy your ice cream!
Cheryl--> I'll say a prayer for your surgery too! Hope all goes well.
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Hi
I had a bilateral mastectomy on August 11, and have had a lot of difficulty sleeping since. Anybody else have problems with this?
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Mommcat - Totally. My sleep pattern is all screwed up. I can fall asleep at 5 and sleep until 6 the next morning or fall asleep at 9 and wake up at 1AM and toss and turn. My onc gave me a scrip for Ambien that I haven't filled. Plan to fill it after I get back from a trip I go on today. Sheesh. AND when I am sleeping, I am dreaming about breast cancer. UGGHH!
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DesignerMom: ki67 tests the proliferation of cells, how fast your cancer is growing by testing the cell turnover rate. my ki67 test was done after the initial biopsy along with the hormone receptor tests. It may be that yours was good, so they didn't mention it. I think (don't quote me on this) that they like it to be less than 15. Mine was 23. Not terrible, but not good. It's just one more test that may or may not be useful in treatment decisions.0
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AmyJo- I'm so glad you have a good onco - that can help so much with pushing thru with quick tests and treatments which is so important. Sounds like they are getting to things very quickly - I hope and pray you respond well to your treatments. God Bless.
BarbaraA - Yes as if its not enough to consume us during our waking ours this dang thing can push its way into our dreams. I too was dreaming of my SNB results. I should know today or tomorrow for sure. I woke thinking - give me a break at night and let me sleeeeeeeeeep.
Cathy
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Hi there. Just back from my blood test/Onco appt. All my scans came back clear, YAY!!!! Also, my blood work was fine so tomorrow I will be getting my second round of chemo. Tonight, we celebrate! (any and every tiny positive step is worth celebrating big time).
All the very best to all of you.
take good care and just breathe. . .
Teklya
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Teklya: Congrats on the scans. One less thing to stress over!0
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AmyJo - You are in my prayers always. I wish I had your spirit. Try to take it one step at a time. I wish I could follow my own advice.
Sleep! I don't know what normal sleep is anymore. I was given Lorazepam for anxiety and I was only taking one 0.5MG pill before bed. It helped me fall asleep but, I was up at 4am. The Lorazepam is a short acting drug (max 6 hours) and is not meant to keep you asleep just get you to fall asleep. After 6 weeks of this, I tried to take Benadryl and that didn't do much for me. I called my doc and explained what was going on and she prescribed Ambien. I tried that for the first time last night. I took half a pill (what I was prescribed to take) at 9:00 and I was up at 1:30! I will try again tonight maybe even take a full pill. The problem with Ambien is that after being on it for a while you need to up the dosage for effectiveness.
I would love to just sleep 6-8 hours a night. I was hoping some of the anxiety would ease up. It's amazing what runs through my mind when all is dark and quiet.
Thanks for letting me ramble....((((Hugs)))) to all! When I blow out the candles on my B-day cake tonight your health and strength will be my wish!
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Having some anxiety/queasiness/nausea this morning. Port placement is at 2pm; I'm not supposed to eat or drink anything, but I'm considering an Ativan if this doesn't let up. So far it's all been surgery, so I haven't really "faced" upcoming chemo. Now that port day is here, I guess it's becoming more of a reality. Wish I could just go away for awhile and come back when it's all over.
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MrsNice- Hang in there girl. The unknown is always worse than the reality. I'm with you about going away and coming back when it is all over. Heck, if they can put Elizabeth Taylor to sleep for two weeks to lose weight, couldn't we sleep through all this misery too? Just kidding, but it's a nice fantasy!
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Teklya, Congratulations on the scans! We all need some good news and a sisters good news helps encourage us too. (I will just breath - just cannot be big breaths for a little while longer.)
MrsNice, That would be nice if we could all go away, say the Bahamas, and come back when this was all over. Sorry to hear about the sickness this morning. Hope all goes well with the Port placement this afternoon. I will be praying for you. Ask them if a shipping dock comes with the port since we are looking for a place for our ship to come in.
(After all, we have to be able to get back home from the Bahamas.) Seriously, I will be praying that everything goes smoothly and a painless as possible. Momcat and Jag; I will be praying that you can find some peaceful rest at night and that it will help heal you. I have not had that problem, at least not yet. I have always been able to fall asleep very quickly and not wake up until the alarm goes off or the dog says it is time to get up. Last night was the first time I have every had a restless night, and that was due to the lingering pain from the liver biopsy and not being able to take anything after midnight because of the PET scan this morning. Anyway I know it is sometime hard to find time to rest with all the dr appointments and tests. I fell asleep during the PET scan and it is a good thing they strap you in for that or I would have been on the floor! I went sound asleep, the technicians had to wake me up! My going to sleep made the test go faster than expected so I got home in time to catch up with all of you.
I have found a new website that is for people with chronic or serious health issues. (We all qualify.) It is www.caringbridge.org it lets you create your own journal and has a guest book for friends and family to sign in and send you messages. It is FREE and is easy to get started and keep up. I do not put medical terms on it but just do simple updates everyday for my friends so that they can keep up with what is going on with me and I don't have to worry about who I told about my day or which day was the last time I talked to them. It sure has saved on my phone minutes and more people are using it than I ever imagined. Great source of encouragement. It does not replace the support we all get here, but it does help family and friends who want to keep up to date on what is going on.
Joy and blessings.
Amy Jo
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Mrs Nice,
Prayers being sent your way today for a smooth procedure and quick recovery...
Tori
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Amy Jo - Caringbridge is great! When I was first diagnosed a friend recommended it to me, and after a week of explaining over and over again what I knew, I finally got a page and it has been fantastic. I put every little detail in there, and I figure people can read as much or as little as they want. The messages people leave for me are a big help and comfort too. I highly recommend it!
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Tomorrow I have a lumpectomy and SNB.
I am so glad I found these boards! Thanks everyone for posting and sharing your story.
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Good luck Travelgal! When I had mine about a month ago I asked to be put out completely. I was talking about a vacation and then the next thing I was waking up. I did feel like vomiting but it went away with some medication.
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