Calling all TNs
Comments
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Hi ladies,
Cocker I was wondering what treatment you have had for your stage? The fact you were dx back in 2011 is promising.
KJ welcome and sorry you're here but I know that God led me to these boards and it has been one of the best things for me. Yes I am pleased to be at SCCA for my treatment. It is a bit of a drive but so worth it. Also, my treatment did work for a long time but with this type of cancer it is hard. I am concerned you are falling and not feeling strong. Might be good idea to talk with MO about this. Have you had treatment already before your surgery? If so what drugs? How did you find out this time around? I find it interesting when I hear of second rounds being a different type. Do you mind me asking how old you were the first time and now? Will be praying.
Thank you all who posted encouragement and support. It sure is a blessing to have this board for us.
Camping is great but tonight a storm is sweeping through but supposed to be better in the late morning. It has been nice to just chill. My onc nurse called me today to let me know my insurance covers the pill Xeloda 100% and don't even need to pay copay...thank you JESUS! Well good night warriors...keep up the fight...Lucy.
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Lucy my treatment was the same as most. I had left breast cancer with no lump. It was found on my two yearly mammo as microcalcifications. Because the calcifications were quite well spread I was advised to have a mastectomy however, in hindsight I wish I had, had a bilateral. My prosthesis is very well made and fits well but I don't like being one sided. I had my surgery with no complications whatsoever but it was found in four nodes with encapsulation (coming out of one node) so my surgeon took them all just to be safe. All my scans, MRI's and echo's tested as normal. I didn't really have any pain just a little bit of soreness so I asked if I could go home the next day. He wasn't very keen on this and said no not yet but I couldn't see the point in taking up a bed when somebody else could have it. So I got dressed and slipped out while he was doing his ward round. Things went well and apart from the tug of the two drains I felt and looked well. They were in a little bag on the floor but I kept forgetting they were there and would get up from my chair and walk away, that was a bit sore. Then came the chemo which was AC with the usual red devil every three weeks. They gave me amend which was wonderful and apart from constipation and some flu-like symptoms for a few days, I had no other issues. I'm not a big eater but the Dexamethazone they gave me made me ravenous and I would eat eggs, bacon, hash browns and tomatoes in the middle of the night. Then I would go do some work as the Dexa kept me awake all night. Then it was time for Taxol and that was a different matter. I reacted to the first infusion of this after just 30 seconds so I had to have a break for ½ hour and they gave me a Diazepam and tried again and all went well. I only got to 7 out of 12 of the taxol because of neuropathy in my fingers and a terrible itchy rash on my hands and could hardly move them. I transferred my work to my home and was able to continue on working full time, I just worked in the mornings, had a nap in the afternoons and then worked in the evenings. I washed my hands more than usual although I do that a lot anyway but when I went into the surgery I didn't bother with a mask because you can get the usual round of germs just poking your head out the front door or at the supermarket. I had and still have great faith in my surgeon who gave me an excellent margin and I had NZ's top oncologist and top radiologist, both were excellent ladies and I received excellent care. I see my surgeon every three months and my oncologist and radiologists every six months, due to soon seeing them yearly. I have complete faith in God and believe He has a plan for all of us. I also have a wonderful family and friends that were wonderful to me and I couldn't have gone through this without them.
I also underwent genetic testing but the results came back inconclusive so hopefully this will not affect my daughter or granddaughter in the future.
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Lucy, I'm sorry to hear about this latest development for you. I hope that whatever your MO and you decide to do next helps halt the cancer's growth. That's great you are going to go camping. It will create some wonderful memories and, hopefully, take your mind off TNBC for a bit. Enjoy your time camping!
It seems like they are learning something new about TNBC all the time. Here's an interesting article I just read that divides TNBC into two catagories. Two distinct types of TNBC
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Simple=Interesting article. Thanks. Hope you are doing well.
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Ally- Hi I am new to this site and thread but I saw you mentioned you had your genetic testing done through blood. When they did mine I had to spit in a cup and they sent that off to a lab. Do you know if that makes any difference. My testing came back negative which kind of shocked me given the family history on my dads side. I know they were also looking for a mutation called PALB2 which also came back negative.
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Melissa:Welcome,sorry you are here but, a great place to be if you have to join. I had blood drawn for my genetic testing. I was counsled over the phone and got my results back 5 weeks later. My insurance paid for the cost ($9000.00). I had a 20% chance of being positive due to family history,TCNB, and ethnic group. They stated they would call me back for another blood draw for the test that links panceatic cancer to breast. She stated that test was just being approved for testing. She did not know when that woud be . I think it was PALB2.
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Melisa just want to welcome you, this is a great place to be for support, information or to vent- all these ladies are so understanding and you will quickly feel like part of our family!
When I had genetic testing done it was also by blood test.
Shari
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When I had my genetic testing done, I had a choice whether to do blood draw or use saliva.
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My genetic testing was done via blood because of the high risk of different types of cancers in the family. A friend of mine just did the saliva test also. I came back negative on all cancers tested. Big Yea!
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I am sorry I haven't found this site sooner! I wonder if its the same accuracy to have drawn through blood or saliva?
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I am always reading, but seldom posting. Sending my love, prayers and positive energy to those dealing with this again.
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Lucy, I so sorry you are dealing with this again. I read too but seldom post. Did they try AC with you? Hope your onc gets you on a good protocol. I did AC x 4 then 12 weeks of Taxol. I did fine throughout with little to no side effects. So far so good:-)
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hi everyone. I'm not sure exactly where to post this, but if anyone has been through a similar situation, id love some input. I was diagnosed with triple negative breast cancer in Jan of 2013. I underwent a bilateral mastectomy in March of the same year. I've had ultrasounds of my left breast (cancer was in the right) every six months since due to some scar tissue that they wanted to keep an eye on. Up until now, everything has looked fine. I went in last week for my ultrasound and they found a lump with irregular borders that they want to do surgery and biopsy. They are thinking its just scar tissue that took a different shape, but I'm TERRIFIED to go through this again. To add to the stress of this, I'm 14 weeks pregnant and the thought of going under general anesthesia scares me so much. Has anyone ever had a biopsy on something like this and it ended up being scar tissue? This is the report from my visit last week. Thank you.
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Keke, first, congrats on the baby! Of course you are concerned. Your thoughts are with the baby and that is natural. I know there are lots of ladies who post here who have been through the scar tissue scare. I think Allydp had some scar tissue biopsied that was negative? She will check in here and chime in I am sure, and others too. They will monitor your baby closely as you have your surgery and biopsy, and this should be a fast surgery, in and out. But I know you are afraid and I am so sorry you are going thru this. Please keep us posted and hugs to you
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Hi Keke, - I, too, have had scar tissue that needed to be biopsied. It must be pretty common. Can you opt for local anesthesia if that gives you more peace of mind? A friend of mine had an appendectomy while pregnant and had local anesthesia without a problem!
Keep us updated!
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Keke, so sorry to hear this, but so so glad you found us. I am prayerful it will be benign: I will gladly lift you up if you like.
You keep talking, singing to that sweet one growing in you---- Do you like your BS? What does your OB?GYN say?
Please keep us posted. When is biopsy? As Another NYC girl asked, is local a possibility?
Gentle hugs
Kath
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thank you everyone! I don't have a biopsy date scheduled yet. I should be getting the call tomorrow to set that up and my pre op appointment. I also have an appointment tomorrow with my ob. At this point I don't have a single datail as to whether they want to go with local or general anesthesia. I'll know more tomorrow though. If I can get away with just local, I'll def go with that. No matter what procedure they decide on, my only request is that the baby be monitored afterwards for a piece of mind. I'll keep all of you updates. Thanks again.
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Hello Keira,
I was glad to see that you followed my suggestion and posted on this thread, rather than hoping someone would see what you had posted on a newly created thread.
I am sure you will get lots of help and support here and I wish you all the very best.
Fond thoughts.
Sylvia
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Melissa - I didn't have the option to use saliva. I know this isn't what you want to hear, but I have heard that it can be a little less reliable. However, I've heard there is a higher likelihood of getting a false positive than false negative. If it were me, I would probably look into retesting with blood just to be 100% and have the peace of mind. You might have a hard time getting it covered since you've already done the saliva, but the lab Ambry Genetics has a program in place for those without coverage or denial. You shouldn't have to pay more than $100 in either of those situations. There's a group on Fb called the BRCA Sisterhood. I'm sure you could post this question there as well and get some great feedback!
Keke - many congrats to you on your baby! Just last month I found two lumps in my breast that originally had cancer. One was in my mastectomy scar and the other was deeper down and felt like it was in between my implant and sternum. They did ultrasound guided needle biopsies on both at first. One came back benign (scar tissue), the other inconclusive. My BS ended up surgically removing and biopsying the one that came back inconclusive and it too came back as scar tissue. So my heart goes out to you, especially being pregnant as well. My BS offered for me to do the surgical removal (excisional biopsy) in her office with a local. I chose sedation cause I'm a big wimp, but if I was pregnant I would have gone with the local as I'm sure it would have been painless. I have no feeling in my breasts post mastectomy anyway and didn't have ANY pain after the procedure whatsoever. Keep us posted. I'll be thinking of you and sending you prayers.
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hello my sisters
Well my weekend with my children was short lived. I have developed another infection in my left Breast. This will be the 3rd time I am going in to have a wound cleaned out. I'm sad thinking about another surgery. This is 4 in 4 months. They do not know what it is. Nothing grows in the lab. I've been checked for mrsa and its negative. Would appreciate your prayers for Wednesday. Digging my roots down deeper and drinking from the one who provides Living Water.
Thank you all.
Blessings
G
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SA8PG, I'm so sorry you're having such a rough time! I'll be praying for you for Wednesday. Please keep us posted! HUGS!!!
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SA8PG, giving you all the positive thoughts I can for a great and final surgery. I'm so sorry you keep developing infections and know it must be draining- we are all here for you, so I hope feel the comfort and strength in our numbers. Hugs and love,
Shari
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Hello girls - I'm not triple negative (in fact the opposite), but wanted to give you all a heads up on some very promising research out of Australia. I'll be praying that it develops further and helps my TN sisters.
You can find the article in this link.
Trish0 -
SA8--- sent you a private message: Trisha Anne, that is so sweet you took the time to share!
Blessings
Kath
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Thanks for the info Ally I will be looking into that and bring it up with my surgeon, I have an appointment with her next Monday! So glad I found this group, I love reading all the uplifting and encouraging posts!
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We are so glad you are here with us Melissa
Thank you Trisha-Anne
SA8 I am saddened by your set back! Enough for you already.
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Hi Keira
You and your baby are in my thoughts and prayers. I hope to hear some good news from you. Be positive and take care.
SA8PG
I hope everything goes well with you soon.
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Hi, just wanted to stop by and say hi! Haven't been here for a bit. Today 4 years ago I was diagnosed with stage 3c/4 (depending on the doc) and am currently NED. I will stop by when I have more time to catch up on all the posts.Sending love to all of you,
Bak
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bak94=Thanks for stopping by. Yeah you on your 4th year anniversary.0 -
Bak...good to hear from you. Congratulations on your cancerversary!
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