Calling all TNs
Comments
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Allydp, good luck with the taxol/carbo. You are about a week ahead of me. Keep me posted on how you feel. Everyone keep promising it's gonna be better than AC, but I'm afraid to get my hopes up.
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Thank you Lisa! I can feel how you felt. This is really annoying, and I so want to get it done!
BanR, I do not remember that my pathology report having that term. I will double check and let you know.
Navymom, simpleminded and all, thank you for the good thoughts!
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Simplelife. Like others, I was able to get my compression sleeves and gloves at a medical supply store. The first time they had my size in stock, the second time they were out and I was able to get ithem 2 days later. Medicare doesn't cover this, but my lymph therapist was able to get a grant to cover the cost. (Breast surgeon wrote the script both times.)
Today's joke: A Sunday school teacher was preparing her little charges to go into the big church. One child asked why they had to be quiet. Teacher answered "Because the adults are sleeping."
My beet seeds are sprouting. Life is good. Jan
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Lol! Jan!!
Inspired and Navymom..as you both did, I guess I need to do my own research in Metformin now. My oncologist says a big No. Will talk to my surgeon too. My rads will be over in 2 days.. how many days after radiations did you start metformin and hormonal therapy if any.
jianchi, simple and others who are about to complete rads, pls let me know the inputs your MOs had to give abt this. All I could make out through the internet is there are many oncos who are not too comfortable prescribing it and many are ok with it.
any idea what is oral chemo? i know some tnbc patients getting that post radiations.
Diagnosis of triple negative brings with it so much debate.. there is no fixed protocol and as patients we end up getting confused.
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My oncologist also said no, (but that it might be a good idea) but he wouldn't write the script for it. Other doctors I saw also said no. But I printed out the studies and abstracts and finally convinced my regular family doctor to go for it. I kept talking about the type II diabetes in my family and my risk factors. So she wrote my script for the 850 twice daily. I didn't have any GI problems. I did start out with half pills for a day or so just to be safe.
Unfortunately since then I've been hospitalized twice and while there they kept trying to stick me to monitor my sugars because I was on it. They finally "got" that I was taking it for bc reasons, not high sugars and stopped poking me.
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Praise God ladies! Kath's scan at 1 year...all clear! Thanks for the well wishes and prayers. They did find a TINY spot on her left humerus which two Oncs and a Radiologist agree is not metastatic disease. They believe it to be muscle irritation. They will monitor but nobody's worried about it.
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fierceblue: thanks for responding!
alhusband: great news! so happy for you. I asked my MO about my follow up plan and if annual PET scan in there or not. He mentioned ..it will be only breast and ovaries for me. Pet scan will be done if I come up with some complaint which is suspicious. The issue with pet scan being done generally is that, there are always red spots in the scan which usually doesn't mean cancer. Your wife's red spot seems one of them.
Take a big sigh of relief!!!!
anybody heard of Fighter? Hope cat's treatment is going on well...
Good health to everybody!!!
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ALHusband - Congrats! Glad you got the results right away too!
I did hear from Fighter_34 a couple of days ago! Her tumors have subsided and surgery will not be necessary. She said she will try and post an update for us!
Have a great day everyone - and hugs to all in treatment!
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Popping in to say Hi! I hope everyone had a fantastic Easter Holiday. I cooked dinner for my BIL and SIL, and my nephew. I can honestly say it was the FIRST day I haven't thought about my cancer since my current dx. What a wonderful day spent with loving family.
I go on Friday for 1st dose of 2nd round of Halaven. I don't really have any SE's other than slight fatigue and constipation just right after tx. But I do have lymphedema in my right hand. Does any one else who suffers from this know if salt intake also contributes to the swelling? It seems more swollen, and I'm wondering if the ham I ate, besides the other salty foods, had an effect on it.
I'm hoping that I have some news about the clinical trial when I see the MO on friday. I don't know if the initial specimen testing is done yet... hopefully it is.
I'm looking into summer vacation. If you had to pick that once in a lifetime vacation, where would it be? (keep in mind I have 2 girls, 16 & 17). ( My wish list is Tahiti, but I think I'll save that for just my husband and me). So far, my kids say Cal., UK, and Caribbean. Husband says the backyard looks good!!! Decisions!!!!
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I know sometimes this is hard to take but if we look around we find something to help us go on.
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Alhusband so happy for you both
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I agree, Cocker! Sometimes we need to be reminded. Today my oldest daughter stopped by with a big container of homemade chicken noodle soup, and brought her youngest children along. So I got to see my newest (5 weeks old) granddaughter today! That sure brightened me up!
ALHusband - great news for you and your wife! We love hearing the good stuff here.
Bluebird- hope things continue to look up for you!
Hugs to all, lilyrose
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AL Husband that's really great news for you and Kathy. But you still haven't told me what a "Grubber" is.
Slowloris good to hear that your side effects are not too hard on you. I also have lymphoedema and never thought it could be related in part to salt. I do salt my dinner. I don't seem to have much taste since chemo and if I put on more salt it's better. One of the side effects I will have all the time now I suppose because although it can improve it never goes away. I do, do a lot of things with my left arm and have usually done the heavy things before I remember I shouldn't. Even my handbag is heavy on that arm mind you that's probably all the things in it that I think I might need ! I don't get any real pain just a slight ache sometimes after typing all day. Plus I still have a cord that hasn't snapped yet though it is softer.
Lily can I borrow your daughter - chicken soup - lovely. Especially here because its getting colder now. You are so, so lucky to have a 5 week old to cuddle. I am so envious. I love little children and babies. We get some lovely ones that come into the surgery. I sit down with them and they chat and chat and tell me all sorts of things. It's so lovely.
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Great news ALHusband. Mompy sorry to see you here but glad you found us. I remember being where you are just a few short months ago. I cried the first time I read about TNBC.also. Hello to everyone out there this morning. I am doing Taxol weekly and I am so tired lately. I am a diabetic and I am going to ask my PCP for metformin. Last time she ask me and I told her I think so let me check into it and it sounds vague but why not.
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BanR, my MO prescribed metformin (850 twice a day) right before I started rads. My RO knows I'm taking it.
ALHusband, that is great about your wife's all clear at one year!
Sloloris, good to hear that your treatment hasn't caused too many SE's. I'm wishing you the best.
After today's radiation treatment, I'll be just past the half way mark. This will be zap #17. It's been nice that rads have been so easy so far.
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Yes Simple, I am so glad for you. Go girl!,
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Hi girls, I come to report. I had the ultrasound this morning. The doctor said that I have two very small lumps (2mm and 4mm), he thinks they are probably just cyst, but he cannot say for sure. I can monitor them and have an ultrasound again in 4 months, or have a biopsy, but the lumps are kinda small now. He says if it was him or his wife's breast, he would just wait. I am waiting to see what my breast surgeon says.
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Jianchi,
When I had an MRI last year, I wanted to get closure on a piece of scar tissue, that my PS, Onc and BS thought was probably scar tissue. The MRI with DWI (diffusion weighted imaging) came back a birads 3 (probably benign) and the breast surgeon's office told me to come back in 4 months for a follow-up ultrasound. I then posted a question online to John Hopkins to see what % of birads 3 comes back as malignant. I read their answer, and I decided for me, that I didn't want to have to go through the uncertainty of not knowing for 4 months. All I could think of is 4 months is a long time that, if it were something, had a lot of time to shed non-healthy cells. I then followed-up and asked John Hopkins if it's reasonable to request a biopsy at this time and they responded that yes it was.
I approached my PS for assistance, because I knew the other members of my team felt confident on the wait, but I was not confident to wait 4 months. I was in a unique position though, because I was having my implants exchanged very soon after that MRI, so I asked if he could just remove this at the time of surgery. He originally said he would do a biopsy, and then I asked can't we just remove it, you're going to be right there. He removed 5 lumps during the surgery of where I had felt little things near base of implants (non-visible), he sent all to lab and results were non-malignant.
Is biopsy the only option? Are you able to get an MRI with DWI? Diffusion weighted MRIs are considered to have an advantage in certain cases, by preventing false positives and preventing unnecessary biopsies. The MRI technician said my Radiologist adds this to all the MRI orders for patients coming through with a prior history of breast cancer.
When I was going through this, these are the questions I asked myself:
- What are the % it could be something serious
- Can I personally handle the waiting, the delay, for a more finite answer
- What procedure will I have done to resolve this matter (ie: a biopsy or removal, different type of surveillance, etc.)
- If I wait and it comes back as something, how would I respond knowing I didn't have this procedure or surveillance done sooner
- What does my gut or instinct tell me?
In your particular case, I would also consider your personal background. Have you had cysts before? If not, ask how are cysts developed? When was your last surveillance? Can they compare the prior u/s to this u/s in regards to this specific location?
I wish you the best and soon your breast surgeon will provide more information. Try not to let your mind wander, as you go through this - your team is very talented and has a lot of information about your case that we don't see. Positive thinking and deep breaths! Sending you a big hug wrapped in chocolate!
-John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...
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jianchi:
get an FNAC ...if it is cyst, it will immediately collapse when it is pricked and FNAC is easier than scans and biopsies...the doctor should agree if you insist.
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BanR, that's exactly how we found out my lump was not a cyst, by a FNA. After I found my suspicious lump, the mammogram showed nothing and the u/s verified the lump but breast cancer was not ruled in or not - they needed more info. Talked to Radiologist, and he set me up for a cyst aspiration 2 days later, we were all going in hopeful it was a cyst. During that cyst aspiration process, when nothing would drain, he went right into prepping me for a biopsy and we did it right then, no additional appointment needed. For my cyst aspiration procedure, they inserted a needle using imaging to guide them, and tried to extract fluid which would have been sent to pathology, even if it had successfully been drained.
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inspired and BanR, thank you both for such smart inputs! I really appreciate it. I will talk to my doctor and update it here.
BanR, my MO was not comfortable to prescribe metformin for me either.
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Jianchi BanR is right an FNA is an easier procedure. An FNA is a fine needle aspiration which is done under an ultrasound guided biopsy. A thin needle is inserted into the mass for sampling and it often avoids a surgical excision biopsy. An FNA is considered a safer procedure. If you are concerned and do not want to wait four months you could get your BS's opinion on this procedure for you when you see him.
When I was going through menopause I had four lumps, two each in breast. aspirated by this method. Even without a numbing agent I didn't have pain but if you have this done I think you will find they will do it under local anaesthetic . If it is a cyst the fluid is aspirated and the cyst immediately goes. My daughter also had this procedure done when she had a lump and all was benign luckily.
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I am SO disappointed. I didn't express the gpNMB to qualify for the CDX-011 trial. I'm still just on taxol and will get a scan in about 3 weeks to check how it is working. I had blood drawn yesterday for another possible trial in Chattanooga. It is for Her2 expression by their own test. I pray I get into that trial so I can try Herceptin.
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Oh Cat!! (((hugs))) Prayers that you are a candidate for this next one and for an excellent follow up scan. How soon until you find out if you qualify?
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Cat I'm so sorry that you didn't get into the trial. Keeping my fingers crossed that the Taxol is working and praying that you get into the trial for Herceptin. You know where, I am deep in that pocket and hoping for better news next time.
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I should hear in 2 weeks about the Her2 test results in Chattanooga.
Jianchi - hope you get some sort of definite answer on those lumps sooner than later. I know how that must bug the heck out of you!
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FYI-there is a free webinar sponsored by LBBC (living beyond breast cancer) tomorrow from 12-1. Go to LBBC.com for information. I hope it's not too late to sign up. I cut and pasted this from my email:
Remember to join LBBC and TNBCF for Part Two of the free webinar series on Triple-Negative Breast Cancer, Managing Fears of Recurrence, on Thursday, April 24 from 12:00 p.m. - 1:00 p.m. (Eastern Time). This webinar can be accessed via telephone or webstream.
P.S. If you know other women who could benefit from this program, please forward this message and let them know it's not too late to register. Visit lbbc.org for more information.
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cocker and cat, thank you both so much for dropping a line for me. Yes, if I insist, they will biopsy the two tiny lumps (FNA). After my radiation today, I had a talk with my Radoation Oncologist. She felt the lumps, and told me that she did not think they are worrisome, and the lumps are in an awkward position (right under my nipple and pretty close to the skin). She thinks they are probably cysts that my body generated as my hot flash has lessened, and my period my come again soon. She knows I am worried, so she suggests that I go have an ultrasound after one month rather than four month to see whether the limps has grown. She will also talk to my one of my BS (I have two BS as I went for a second opinion) who works in the same hospital tomorrow and discuss this. I also have made an appointment with this BS next Thursday. Fingers crossed.
Thank you ladies for all your advice and kind words. I so need them!
Cat, I hope taxol works well for you and you get the other trial!
Hugs to you all!
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Off to round 8 of taxol today. It gets worse every time but almost over!
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Hello ladies. I've been off this board for a year but wanted to check in and say that my 4 year mammogram was fine. I'm well and healthy. When I started this journey, April 2010, I was so scared and it seemed like I never saw posts here from women who had gone through treatment and were healthy. I promised myself that if I made it through I would post and say hello.
Interestingly though every checkup and blood test has been normal, the Doc at Sloan Kettering changed my once a year checkups to every six months, with a ultrasound in between mammograms. I suspect that is inline with studies showing that Triple Negs have a higher rate of BC in the other breast.
This is a wonderful board and my heart and love go out to each of you.
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