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Shanghaiedsherry View Drop Down
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    Posted: Oct 18 2018 at 7:57pm
123Donna,

I am at reconstruction stage, but 1st visit to plastic surgeon was disappointing. His only recommendation was a breast lift and reduction in size of the healthy breast due to radiation and supposedly because the oncologists don't like fat grafts due to calcifications. Am due to see original breast surgeon and 2nd opinion.

What was your experience?

Shanghaiedsherry
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shanghaiedsherry Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2018 at 7:51pm
Hi Everyone,

I'm Sherry from Wylie, TX, suburb of Dallas. I was DX with TNBC December 2017. Dissection 1/2018. Stage IIB, Grade 3, 1.2 cm with satellite tumor .5 cm. 1 of 3 nodes positive. 4 cycles of Taxotere/Cytoxan and 33 cycles of radiation.

Prognosis was not great. Chemo and radiation gave me 72% survival rate. I'm white, 65 yrs, relatively healthy, slightly overweight, no history of breast cancer in family. BRAC 1 & 2 negative. Daughter, 39, diagnosed with DCIS in October 2017 & sister, 63, diagnosed with ALH in January 2018.

Glad to find this group.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Peggy5 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2018 at 11:42pm
Holly,
I had both chemo and radiation and I have to say that the hype was worse than the reality as far chemo was concerned.  I did have a few hard days with vomiting, but the drugs they have to combat the nausea are awesome--they've come a long way! Knowing how aggressive TNBC can be, I wouldn't have been comfortable not giving it my best shot at survival.  Just my opinion--everyone has to decide for themselves. Best of luck to your mom!!!

Peggy
Almost to the 2 year mark!
Stage 1, lumpectomy, chemo, radiation
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2018 at 11:03pm
Holly,

Unfortunately there is no targeted therapy for TNBC.  The only options we have are surgery, chemo and radiation.  You are right, there are no guarantees.  I can only say you get one chance of trying to beat this the first time.  Give it everything you've got and hope for the best.  TNBC is aggressive and more likely to spread through the lymph and vascular system than other breast cancers.  Chemo and radiation are used to hopefully kill any cells that might have escaped the tumor.

Here's a good link for more information:


Another good guide to read:



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote HollyM Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2018 at 1:08pm
My mom has been recently diagnosed with Triple Negative Breast Cancer IDC stage 2, 3.5 cm tumor. She has had a lumpectomy with good margins. They want to start chemotherapy right away, but she is considering not doing it because of the side effects. Is anyone struggling with the same issue. Either decision does not guarantee anything. Not sure what to do?

Thanks 
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Mountain View View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2018 at 11:34am
I am recently diagnosed.  Looking for women who decided not to do chemo and what their experience has been like, please private message me if you can.    I did a lumpectomy 1.8 cm, I did not let them check lymph nodes.  All they recommend is chemo which I do not want to do.  I understand it works for a lot of people so I am looking for people who opted not to do chemo.   Thank you so much 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DomDeltoro Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2018 at 12:58am
great initiative, glad the site is still growing strong since inception!! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisajo Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2018 at 5:44pm
Thank you for your response. Since my initial post treatment plans have changed. They are no longer doing the SAVI. They are now doing full radiation of the breast. They will begin with Chemo and radiation will follow.
Sister of a Tripple Negative Fighter
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hpsimon Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2018 at 4:11pm
Thank you so much for this site!Big smile

My mother, who is 84, is in remission for ovarian cancer.  She now needs a mastectomy for TNBC which they think is stage 2.  She is considering not having the chemo because of the side effects from the chemos (last session was June 26th) for the ovarian cancer.  

Is there anybody on this site that had a mastectomy without chemo and had success?

We are in New York and also looking into other trials that have less side effects.


Thanks,
Helena
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2018 at 9:48am
Welcome LisaJo, I'm so sorry for your sisters diagnosis. It's wonderful she has a caring involved sister! The support I got from friends and family thru treatment was the only bright spot thru my ordeals, your sister is lucky to have you!
SAVI is a radiation therapy, a way to do radiation on a smaller area of the breast, as opposed to whole breast radiation. Is this the only treatment she's to receive in addition to the lumpectomy? Treatment is usually based on the size of the cancer and lymph node involvement, along with the health of the patient and her ability to survive the different treatment options. I'm afraid I don't know much about the SAVI radiation, I had whole breast radiation the first time I had tnbc, after lumpectomy and chemo. Whole breast radiation is what we usually see with TNBC, so I'm curious as to the size of tumor/s. Are you in the US? I
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisajo Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2018 at 9:14am
I am new to this site. My sister was diagnosed almost 3 weeks ago with Triple negative invasive ductal breast cancer. She had surgery to remove the tumor, but the margins were positive so she had to have another surgery. They removed 4 lymph nodes and they were a positive negative meaning that there were cancer cells present but they were so minutely present that it was considered negative. She went to the dr yesterday and the margins are negative so they are proceeding with a treatment called SAVI. Any info that you can provide will be so appreciated. She is scared to death of corse, and overwhelmed.
Sister of a Tripple Negative Fighter
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2018 at 9:38pm
What you say is true, but honestly, because of the pregnancy, I'm fairly limited at the beginning of treatment. Most likely only my third stage of chemo can be altered as it stands. Also, a friend of ours used their flight points from a credit card! We're flying for free! Bless all these people who are helping us!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2018 at 4:23pm
Great news!!!!!!!!!!!!!!  If you are not able to start chemo till 8/8 anyway...that is only a few days difference till MD Anderson...maybe wait till you get there???  I am not suggesting that is what you should do only putting the idea on the table. MD Anderson is kind of like getting to take your case to the Supreme Court- the highest authority on all cancer, really in the world. I tried to explain to my TNBC friend that once you start with one oncologist's plan - you can't take back what ever has already gone in you. You are kind of committed to some degree. That is why a second opinion is best before you start, not when there is a problem a couple of chemo sessions in treatment plan.
If you are flying, don't hesitate to call Southwest or American and ask for the MD Anderson "emergency Fare". I knew a girl who had to fly the next day to md. anderson and she looked online and it was supposed to be like $600 one way and she called and explained and had to give Dr phone number/clinic floor/appt time ....and she got it for $69. I know your Houston family will be happy to see you!! Try and  Keep us posted even though I know you will be busy! Lori
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2018 at 2:55pm
Just wanted to let you all know that miraculously, I got into MD Anderson for August 13th!! Even though they don't think the appointment will be as helpful because I'll have already started a treatment plan, I can't imagine that it's not malleable in some way, especially the second and third stages of my treatment plan!
Thank you all for your suggestions and support, they encouraged me to move forward with something crazy!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2018 at 10:57pm
Hi Debbie, You are NOT alone! You are going to make new friendships with women( and men) that you will cherish in this turn in your life. I am supporting a friend who was diagnosed with TNBC in late June. I have my own cancer experience being diagnosed with ovarian (3c) in 2005 at the age of 44. Cancer is a crazy journey but I have laughed with my new friends as much as I have cried. The first few weeks are crazy and stressful, but as soon as you have your plan, you can take a breath. My friend had her first chemo today and she called me and she sounded "normal" for the first time in 30 days.
I have been doing lots of research for my friend because I am working on my masters at TWU. Surprise! I am becoming a medical librarian. All my research points to immunotherapy being the most cutting edge promise for TNBC. Recent medical journals are buzzing about results from recent trials. I am impressed that your Dr. already has you enrolled.
I am going to suggest applying for social security disability. I went on it as soon as I could and it worked out for me because I had a recurrence and then I entered 2 clinical trials. I am happy to hear that you have a supportive office and great neighbors. My apartment maintenance man saved me because he walked by my building several times a day and had a key to my apartment in case I needed a ride to the ER (blood transfusion) or a run for some crazy junk food craving, equal in importance to me.
Cancer is always harder on our families than for us, in my opinion. I think it might be a blessing that your youngest is off for college. Visits with that child will give you something to look forward to and will reduce stress for them seeing the day-to-day, ups and downs that you will encounter. I am 13 years ahead of you in this cancer journey, and I pray that you will be reaching out to a Newbie in 2031 on this website to offer hope. I will be chiming in right behind you!!!! Lori
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie109 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2018 at 3:48pm
Kelly,
Your response was so comforting. Thank you for that. Just you saying it's not a death sentence was what I needed to hear. What was your treatment like in 2016? What is your screening like now? I am guessing you are now about my age, I just turned 55.
I am very alone in this journey so any friends I can gain will be very needed and appreciated. I am single with 3 grown children. My youngest goes away to college in a few weeks leaving me alone at home for the first time, not good timing. My older two live 4 hours and across the country from me respectively. I do have friends nearby that I can lean on, but they have husbands, careers and families as well.
I have already signed up for the immunotherapy trial. My Dr recommended it. I don't know how to go about getting a 2nd opinion. Where would I go. I live in Central NY state and my treating oncologist is in Binghamton. They are recommending chemo first. I have no idea what to expect as I have never been close to anyone going through this kind of treatment. Can you or others tell me what to expect. Will I be able to continue working? I work in a small very supportive but very busy office.
I am so very appreciative of this support since I have no clue where to turn. Thank you again Kelly. Debbie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2018 at 10:06am
Welcome Debbie, I'm so sorry for your diagnosis. I was diagnosed in 2009, and I had lymph node involvement as well - I know what you are feeling. Before I started chemo I updated my will, got power of attorneys ready for my husband, cleaned out my household files and made notes on everything so that he could understand easily where everything was, made a list of all the household bills.... I packed away all of our Christmas stuff carefully, in case I wasn't the one that unpacked it the next year..... I preparing for my death at 45 years old and I was terrified. I found this place a week later, the wonderful folks here talked me off the ledge and helped me believe I was going to beat it. And so I did! And you can too. They've made advancements since then too, so there's even more options in your tool box for treatment, it's not a death sentence!
Everyone goes through the testing your about to have when they're diagnosed with cancer, to make sure it's not spread beyond what they've found in your breast and axilla. Be prepared for "things" to turn up that require further testing. You've lived in that body for a while,.and it leaves marks :) it's usually nothing, so don't panic! The first time I had a "thing" on my lung, back rib and ovary. Lung xray showed a scar from pneumonia many years ago, back xray showed a healed rib fracture i didn't know if had, probably from a 1985 car wreck, and ultrasound showed a very normal fluid filled cyst on my ovary. I had a recurrence in 2016 (extremely rare!!) This time it was my thyroid and nasal cavity that lit up - ultrasound and bloodwork showed normal thyroid inflammation, a very uncomfortable scope up my nose showed nothing going on up there. ALL of that is to show you that when they start telling you stuff showed up its probably nothing!!
Have you found another doctor to get a second opinion for treatment? Let us know if you need doctor recommendations, it's a step we all highly recommend. You might be a good candidate for an immunotherapy trial or something - both times second opinions changed my treatment plan. Your doctor should welcome the input of a second opinion so don't feel weird about it.
Just remember to stop and breathe! If you're anxiety is too much tell your doctor - medication for anxiety is common at this very stressful point in the cancer journey. And bring your fears back here and let us help. You're going to get thru this!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie109 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 8:59pm
I am new here and am still in shock. I had a mammogram on July 6 and learned that I have TNBC with largest tumor at 1.65 cm but multiple lymph nodes involved under my arm. I am having CT and bone scans this week and I am so scared of the results. Can anyone offer encouragement or advice and similar circumstances?? My stage is III C due to the lymph node involvement. I don't have symptoms anywhere else. Need encouragement.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 2:27pm
Leah, I think you are 100% right in going to MD Anderson. I am supporting a friend with TNBC on this site but I had ovarian cancer in 2005. All of my doctors where I received treatment at UNC/Chapel Hill, NC and Baylor/Dallas all trained at MD Anderson. If you read the bios at all the great cancer hospitals (NCI) around our country ,  almost all those oncologists/surgeons trained there. I am so happy you have family in Houston and that you would not have that added stress of travel/lodging. I hope you can get in touch with a cancer navigator there, they can help with appointments for special circumstances- like your case. Check with Southwest airlines and ask if they still have a MD Anderson special fare in case you get worked in at the last minute for an appointment. Remember to breathe and get some fresh air in between all these phone calls. Thinking of you, Lori
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 2:03pm
I know she's the best for your situation! Even if you have to start chemo before you see her it would be so worth it to still see her. My doc at MD Anderson is Vicente Valero, I love him. He's wicked smart,.really listens and is very thorough. His clinical interest is aggressive breast cancers and locally advanced BC. In case you need a second choice Dr, I highly recommend him!
There's few things in life that have impressed me as much as MD Anderson. My husband and I will be forever grateful for our experience there. I'm so glad you're working to get them on your team. Let us know what happens!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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