Calling all TNs

slowloris

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!!!!

Cocker_Spaniel

I know sometimes this is hard to take but if we look around we find something to help us go on.

 

Meadow

Alhusband so happy for you both

lilyrose53

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

Cocker_Spaniel

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.       

tekwriter

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.

simplelife4real

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.

Meadow

Yes Simple, I am so glad for you. Go girl!,

Jianchi

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.

InspiredbyDolce

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...

BanR

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.

InspiredbyDolce

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.

Jianchi

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. 

Cocker_Spaniel

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.

CatWhispurrer

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.

InspiredbyDolce

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?

Cocker_Spaniel

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.  

CatWhispurrer

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!

Lisaj514

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.

Jianchi

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!

tekwriter

Off to round 8 of taxol today.  It gets worse every time but almost over!

mitymuffin

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. 

Lisaj514

mitymuffin-this is the stuff we like to hear. Thank you for checking in. Looking at your stats, did you have radiation after chemo? You live in ms, did you go to Sloan Kettering in nyc for your treatment?

mitymuffin

Lisa, 

Yes I had radiation after the chemo. I went to Sloan Kettering in NYC for the surgery and for a treatment plan, and I go back there for my check ups. I did the chemo protocol that Sloan Kettering recommended, and the radiation, closer to home. 

slv58

Mitymuffin, thank you for posting such a positive update, this helps us all! May I ask if you have any links to the study you mentioned about tn having higher incidence of bc in other breast? I would love to show this to my mo and discuss more frequent check ups. I have never heard this before. 

mitymuffin

Shari,

I think my information is actually old, not new, but I read the article on the Breast cancer.org site  http://www.breastcancer.org/research-news/20090710?utm_source=Personalization&utm_medium=accounts&utm_campaign=27

I do have dense breasts, and they say that dense breasts should be monitored with ultrasound or MRI as well as mammograms. So, Sloan Kettering said to have the ultrasound (or MRI) in between yearly mammograms.  

I know its hard to believe for those who are still in shock from their diagnosis or undergoing treatment, but I never even think about having had breast cancer anymore, except when my check up times roll around. 

Love to you all. 

slv58

thank you MM! I like the idea of alternating mammograms with ultrasound, but I'm sure this is not standard of care in Canada, especially for someone who does not have dense tissue. There is also the controversy of a recent study questioning the benefit of yearly mammograms. It's all so confusing. A lot of times I believe cost of diagnostic requests come to play when it comes to screening.

I still plan on discussing this with my mo in June. 

Lisaj514

I just listened to the webinar on managing the fear of recurrence with tnbc through LBBC.org. It was very good. You can still listen to it as well as the first part which was on medical advances with tnbc (I didn't listen to this one but now I'm going to go back and listen). Go to LBBC.org/events and look for the April webinar, from 4/17 and 4/24. Its free and was very good.

Cocker_Spaniel

Mitty it is so good to hear from  you and that you are doing so well.  Have missed your smiley face on here.  Congratulations,  it's wonderful that you are now four years out so whatever it is you are doing keep on doing it and we will see you again in April 2015!.     

mitymuffin

Thank you Cocker Spaniel.  I'm wishing you good health and happy days.