2010 Sisters
Comments
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Hi everyone
Had my first dose of Herceptin this am and will be on TCH chemo starting next week. So far no problems. Got anti-nausea meds, benadryl and special mouthwash. Bring it on!
Peace and laughter,
Cheryl
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I hope all is well. amyjo so glad to see you are doing better.
I have an appt. with a surgeon tomorrow for a consult about getting my port.Things are moving along. Chemo starts next week as long as the MRI I had today comes back good.Have an appt. on thursday at a salon for people needing head coverings,wigs etc. I think that will be a reality check of an appt. Things are really starting to make it all so real.I keep asking myself why i was a chosen one and can't come up with a good answer.
I have decided that there is nothing I can do right now but move forward and do all that I am told and deal with it the best I can. No looking back. Thats advice I would give out so I am taking it myself.
Have a good night everybody!
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inthepink- You are going to be just fine. You are doing everything right, just keep moving in a forward direction. Waiting is really worse than once you get started. Then you can take charge...and you sound like a take charge kind of lady! I got a free headwrap from this organization. It is really lovely, beautifully made, no inside seams to rub. The organization is non profit and they are very nice. The style is really quite fashionable and exotic too! http://www.gailafund.org/site/gaila_for_good.php
amyjo- I hope you are resting and healing and dreaming of healthy, happy days to come.
cherylq- Love your attitude! Bring it on is right! Let's all kick some cancer butt!
marlegal- Thanks for cheering us on. One day we will be you, living our lives, looking back on these days, and like you, changed forever, in many good ways.
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hi all, our DIEP plans have hit a snag and i'm in need of some advice. My wife was diagnosed in late july with IDC (see tag line). She spent August having every test under the sun (MRI, cat scan, bone scan) and meeting with both our primary surgeon and plastic surgeon. After the latter last week she decided on DIEP and unilateral mastectomy at the same time. Now, we find that due to scheduling issues (her primary surgeon is taking a 2 week trip) we can't get her in for surgery until around October 13-14.
She is of course freaked out over the wait, especially since she has been told she has an aggressive form of BC (poorly defined, HER2+++). So far there's no evidence of meta and the MRI didn't indicate any lymphnode issues, and they think the tumor is small (1-2 CM).
The other thing she's wrestling with is whether or not she'll need radiation. The PS has told us if she needs it, he can't do the DIEP and would instead do TEs until post-radiation, then DIEP. But the primary surgeon hasn't given us any indication as to whether or not she would or would not need radiation (we have a call into the office now). We're also still waiting to hear back from the primary surgeon on whether it's ok to wait until October.
So, she's wondering if she should just go ahead and have the mastectomy/TEs and wait on DIEP. If she chooses this route, she could possibly have surgery next week and gain a month. She would rather wait to get everything done at once instead of having to face another surgery down the road.
Another option is for us to go Johns Hopkins (about 2 hours from us), but I'm concerned if we head down that road then the wait will put us into October (what have others found in terms of waiting time with JH?)
Any advice/experiences/help is appreciated. Thanks!
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Not always posting, but trying to keep up. Trying to re-schedule my 2nd Abraxane for 9/9.
Joint pain is terrible. Saddle UP and keep riding.
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imatthew--> don't have much advice to offer, but could she see the radiation oncologist to find out if she needs rads first? He/she is usually the one to make that decision. They might want to do a node biopsy first though to find out if it is in the nodes. I had 3 and none of them showed up on the MRI. Hopefully some others that know more about recon will come on and give you some advice! Hang in there!! This is a difficult time, but once she has a plan, you will both feel better.0
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imatthew - I also faced a long frustrating wait for my surgery. In the end - since it was known that I would need chemo I ended up getting chemo first and then surgery. I was able to get my sentinel lymph node surgery done before the chemo started. The information from this surgery helped the oncologist decide how much chemo I needed. Would your wife consider having chemo first before her surgery? Waiting is really awful and I felt much better once treatment started. The articles that I have read all say that chemo followed by surgery is just as effective as surgery followed by chemo. Best wishes and keep us posted.
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imatthew - I had surgry on aug 9th and was suppose to have both breast remove and start reconstruction at the same time but when they got me in surgry my lympth nodes tested postive which they didn't think that was gonna happen. So my PS decided not to go ahead an remove my other breast because I would have to do chemo and rads now. he saids that the chemo and rads kill the tissue so he wanted to wait til I finish treatment before they remove the other breast and start reconstruction.
The Dr. don't really know how bad things are til they get in there and you get the final path report when they removed my one bad breast I had some other stuff going on to besides my IDC.
Wish you and your wife the best of luck. it all get very agravating at times i'm still upset with my PS I think they still should of remove the other breast so I would not have to go back through another major surgery and just went back to get the implants when treatment was done. so I probally will be choosing a new PS when i am done with treatment.
HANG IN THERE !!!!
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imatthew: ditto. There are no blanket answers, unfortunately. But delays are common. There are so many factors in this disease : type of cancer, treatment and reconstruction options, how treatments impact reconstruction, etc. I was diagnosed in May, surgery in July and chemo started in Sept. I saw a radiation oncologist to get a recommendation on rads, but it was after surgery and she had a complete path report to look at (tumor size/grade, node involvement, etc.) on which to base her recommendation. I don't know how much they can tell you at this point. Try not to freak out too much. I was told BC is mostly slow growing (as cancer goes) and in very rare cases only would a month make much difference. Just try to get as much info as possible before you make any decisions. Prayers for your wife and you.0
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good morning sistas
i have a question?????did anyone have nodes removed and not have a drain put in?i read somewhere that some drs dont put the drain in.I need infor as i dont want the drain and im having nodes removed on aug 20th
thanks
K
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imatthew:
I had a delay too with surgery because of scheduling and vacations. I too have a very aggressive grade 3, HER2+ large tumor (6cm or 7cm but still waiting for path report. Just had surgery a week ago). Thing is cancer even the fast ones don't grow that fast. 2 weeks will not make a difference. My biopsy was in early July but my surgery August 31st.This is not that unusual. They actually told me my case was moving quickly. I've probably had this cancer for 4 years. If it was slow growing then maybe it would be 8-9 years. Cancer doesn't grow quite as fast as your hair
It seems if you have IBC then they rush you in. We have IDC which is serious but not as fast moving as IBC from what I have read.
UPDATE:
tumor only 5.5cm!0 -
grannydukes- I had two surgeries. The first LUMP and SNB and my surgeon did NOT use drain. I healed beautifully. Then I needed more nodes removed and had AND. Again, NO drain and I healed beautifully, had to have it drained a couple times, a 5 minute office procedure. Felt nothing. I asked my BS why she did not use drains. She said she didn't, but she sure fixed a lot of other BS surgeries with messed up drains. I would definitely ask about not having a drain if possible.0
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imatthew: I had my surgery Aug 2nd. Like others have said every case is a little different. In my case I had a bilateral mastectomy with lymph nodes on the right side removed and the ones on the left side were not able to be removed without me losing the use of that arm because the node was so calcified around the nerves. They are hoping the radiation will soften or dissolve this one.
My PS put in the tissue expanders and I will be having 6-8 weeks of Radiation and 4-6 months of Chemo and another year of other therapies to strengthen my bones. Tell your wife to do what feels comfortable and right for her. Both of you pray together, but let the decision be hers. You sound like a very loving and caring husband and that is the most important part of getting through this disease. If she is not happy with any doctor, then change doctors. I drive about 25 extra miles to go to the doctor I am comfortable with and confident in his judgment.
Another tip is to make sure all the doctors get copies of all the tests and lab reports and talk to each other. Find the one that communicates best to you and your wife. Then call them with all the questions. Also start a file of all her medical records. At every dr visit request a copy of the procedures and dr notes be sent to you. When you get MRIs, sonograms, bone scans, CT scans or whatever request a copy of the film or CD of the images to take with you. This will be very useful if you change doctors (let them make copies, but you keep your copies) or if a natural disaster occurs and you have to move someplace far away from you current home there will be no unnecessary interruptions in her treatments. There is usually no charge for these copies if you request them at the time of treatment or test. You may not understand everything in them, esp. the pathology reports, but some one here is usually able to help or at least point you in the tight direction if you cannot get your dr to explain it in detail to you.
Get your wife into a support group like this one. These ladies have all been such an inspiration and encouragement to me, plus we can have out rants and pity parties and everyone understands we all have days like that.
All of our thoughts and prayers are with you and your wife as you journey down this often bumpy road. This group has a saying when things are getting rough. We just "Saddle up and ride."
Wishing you joy and blessings.
Amy Jo
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Grannydukes - I had 5 level 1 nodes removed with no drains. My BS said that he usually does not put drains in either for Axillary dissection if I had to have that done. Good luck!
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thanks girls.the sentinel node disection dr#1 did i had no drains but this dr feels that there will be possibly many nodes removed and where will all the stuff go if not for the drains?????.i am so worried about these drains and so confused.i know every case is different but im usually the one with the complications.I love this dr #3 so i want to just do the right thing.I STILL DONT WANT THE DRAINS.thanks again my sistas.God bless all of you
huggggggggggggs
K
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grannydukes:
I had my BMX, 1 side sentinel node the other side level I nodes removed a week ago Tuesday. I had 2 drains but there were removed yesterday.
Thing is the body can absorb this fluid but if there is going to be a lot of it the drains take care of it rather than you filling with fluid and if it gets too much then they have to aspirate (again not a big deal).
There are arguements for both sides but in your case there might not be as much fluid as there would be if you had what I had done. The one negative thing with drains is it can open you up to infection. My doctor had me on antibiotics the entire time and 2 days (through tomorrow) once they came out.
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lago..thank you...i am allergic to most antibiotic and stomach reacts badly to what i am not allergic to thanks to gerd,ulcers,collitus etc.another reason i dont want the drain.it seems that everything pertaining to bc is an argument...pro versus con.and i still dont knoow what to do
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Yes I too have my issues with antibiotics. They found one that doesn't seem to be causing me problems.I get yeast infections from them. Yeast infections can also give me hives and gerd. Strange but it happened the last 2 times I got a yeast infection years ago).
I have had gerd too but managed to get that under control 3 years ago… but still have IBS issues. I control that with diet and probotic. Highly recommend probiotic and/or eating prunes or dried apricots. Anesthesia can make you constipated. I did the probiotic, ate yogurt, dried apricots and lots of veggies after surgery and didn't have the problem even with my IBS. I also took acidophilus capsules just to make sure I didn't get the yeast infection eventhough I was eating yogurt too. I'm almost done with the pills so I guess it worked.
I wouldn't sweat the drains. I know my BS said I was getting 4 drains. My PS said only 2 drains and since he was the one finishing up I only got 2. You will probably be fine without them. I must admit mine came out yesterday and I feel my range of motion has greatly improved… overnight!
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lago, great news on the tumor size!! Now let's get it down to 0!!!
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OK just got a call from the nurse. NODES ALL NEGATIVE!!!!! (10 from left/4 from right) I'm a stage IIB
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I was diagnosed 07/28 and had a double mastectomy 08/25. I also had 4 lymph nodes removed. i feel like poop because yesterday I tried to run the dumb steam cleaner.
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lago-Whoo hoo I'm doing the happy dance for your "nymph lodes" as I prefer to call them!
granny-I had 9 nodes removed, no drain. There is also some evidence that they should NOT take too many nodes out (unless they look cancerous) because of the possibility of lymphedema. I think removing nodes is more a diagnostic tool, so they can stage you, not to actually remove the cancer. You might want to ask some of the ladies on the lymphedema thread their thoughts. I THINK I read somewhere that if you didn't remove more than 9 nodes, your chances of not getting lymphedema were much better. I'll try to find out more.
amyjo- You trooper you! Here you are, barely out of surgery and giving comfort and advice. You sure DO saddle up. You get the Rodeo Queen award!
Mia Lombardo- WHAT are you thinking? If a double MX less than two weeks ago isn't an excuse for not cleaning, I don't know what is! Please rest. Your body needs to heal. Trust me, those dust balls won't hurt you, I've had some kicking around here for a LOOONG time.
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always good with bad news.thanks for all the info.i have a lot of questions for my dr. Lago.congrats...
goin for the pre op tomorrow. dr.calling tonight about the drains.im a little nervous to say the least.but im one step closer to i hope my final surgery on the 20th.
it will be 1 yr. in dec. and i am still nowhere.all because one stupid dr.did the wrong thing...
WHEN THE SISTAS SAY SECOND OPINION PLEASE NEWBEES LISTEN.
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grannydukes - I am allergic to everything so they have to be very creative in finding meds I can take. Trust me there are meds out there for everything your system will be able to tolerate. They just have to do some research to find them.
I have 3 drains and it has not been that bad. I think I will be getting them out tomorrow. You do have to be careful and make sure everyone washes their hands and wears gloves when clearing the drains each time. If there is going to be a lot of fluid the drains are good because they let the tissue inside compress together and heal quicker. They had me on antibiotics before the surgery and then sent some home that I will finish up on Sat. If the fluid is not removed there is a chance of infection or that the live tissue will not heal and could even die which would mean more surgery. I was terrified of the having to have drains, but the thought of another surgery was worse. You do whatever you feel is right for you. Take lago's recommendation on the probiotics and the dried fruit. It really does make things easier on your digestive system. Everything will be okay and remember we are all here sending hugs and prayers.
I am able to do more than I thought, but as usual over did it yesterday so today was just shower, Popsicle, nap and blog. I think the family is going to Red Robin for supper and I will have my pasta and horchata. I got a good nights rest last night and my husband woke me up once because he thought I was not breathing. Because of my asthma, I sometimes breath so shallow that he thinks I am not breathing. He worries so much about me there is not any point in me worrying about anything. He does enough for at least 3 people. I do love this man, he is truly the love of my life. Sending you all hugs and prayers for a good evening and restful night.
Joy and blessings,
Amy Jo
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DesignerMom: Well I am originally from Texas and do really ride horses and in my younger days did ride barrel races. Never was a Rodeo Queen. Love all the encouragement from my sistas.
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thank you amyjo...........im waiting patiently to speak to my dr tonight.i have a lot of questions for her on this subject.i put this question on a few threads and the answers are a mixed bag......so ill pray on it and wait to see what the dr.says.
I love my sistas...all of them.God bless each and every one of you.
K
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Iago: CONGRATS!!! Great news on the nymphs.
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Hi sistas, Granny - I also had 5 nodes removed and no drain. My BS did tell me if she had to remove too many then a drain would be required. She only took the ones with the dye in them and luckily it was only 5.
I did get good news today - no mets to bones. Finally an answer I've been waiting almost a week for since I was told the bone scan shows spots. Now I can start my chemo next Friday Sept. 17, and I go to get my picc line in tomorrow. Take care sistas! Good luck to you all.
Oh one more thing, since I'm allergic to surgical tape and paper tape and tagederm I have no idea what they will do tomorrow for my picc line. Anyone have any experiences with tape allergies? and had any idea what may work?
Cathy
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Tryn2staycalm: Congrats to you too. Everybody is getting good news today!
I have a question. It has been one week today since I had my Neulasta shot. I've been out all day, lunch with a friend, then shopping. When I got home, my legs and hips started just killing me. Weird pains in them. It's only my hips and my thighs. Could this be Neulasta pain a week late? I haven't had any problem at all until now. Or maybe I just did something weird this afternoon? I hate having to try to figure out what every little thing going on in my body is.
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Hi Cathy, I too have the tape allergy issues. My PS used skin glue and it has been great. Protects the mx site and the port site without skin issues.
Cheryl
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