TNBC & No Chemo??? |
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RegS 
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Joined: Oct 16 2010 Location: Iowa Status: Offline Points: 9 |
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 Posted: Oct 17 2010 at 6:21pm |
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Dear everybody, Thanks so much for your info and support. Navigating all these decisions and the waiting are taking their toll. I used to be a fairly normal person if somewhat a of a control freak before this diagnosis. Now everything is out of my control. I'm trying to educate myself and advocate for myself but the doctors do not seem to like that very much. I get the feeling they would prefer a complacent compliant patient.
I'm trying to let go and just be as normal as possible but that's pretty hard right now. There are all these doubts. I know there are no 100% guarantees, but wouldn't it be nice? thanks again, I appreciate the feedback and support.
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Regina
__________________________ Dx 7/10, DCIS, revised Dx 10/10 IDC Stage 1, Grade 3, 0/1N, .5 cm with microinvasion of less than .1 cm, lumpectomy 8/10, followed by 6 weeks of radiation. |
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ann u
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Joined: Jan 08 2010 Location: Arizona Status: Offline Points: 181 |
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Posted: Oct 17 2010 at 6:25pm |
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I am another person who had no chemo for my 3mm IDC that was found almost a year ago. This was my second go-around with breast cancer - first time was over 4 years ago. At that time, I did a lumpectomy, radiation and chemo (4 x AC).
My oncologist considered this a new occurance, rather than a recurrance. I have been monitored well since my original diagnosis (mammograms and breast MRI's every six months), which is why the second time was caught so early. Had I not been BRCA1+ and having had breast cancer once before, my radiologist probably would have recommended waiting another 3-6 months, but instead did a stereotactic biopsy.
The second time around I had a double mastectomy, and almost a year later I seem to be doing ok. I question my oncologist each time I see her about why I did not do chemo. She thinks it's overkill, and would do more harm than good to my body.
Do I doubt myself and her? Usually every other day. But I try not to obsess, and live my life happily.
Ann
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Mary58
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Joined: Feb 13 2010 Location: Wisconsin Status: Offline Points: 161 |
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Posted: Oct 17 2010 at 7:31pm |
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Oh, Regina - you sound just like me. I thought it was OUR job to learn so that we can make the best decisions - in an area of which it is not our expertise. It does make you feel like you are going crazy. I remember just wanting to relax because it all seemed so crazy and yes you are right about the no control. That is when I decided I had talked, read, looked at different things and I believe it was mid-way through radiation before I relaxed even a little bit. I had my six month check but went in early due to a lump and nipple discharge from my lumpectomy breast. I think, it is nothing - but, it took me a while to believe anyone. My surgeon first thought it was a seroma, now he just thinks it is scar tissue or the edge of where my margins were. I have three grandkids that jump all over me and I didn't think I needed to protect myself or that this could even happen.
The discharge stopped, the lumpy area feels the same day after day - so I think this is just the new me. I realize and know that I am in God's hands and he will direct my path. May you find some peace sooner rather than later. Take care - Mary < id="gwProxy" ="">< ="ifofjsCall==''jsCall;elsesetTimeout'jsCall',500;" id="jsProxy" =""> |
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Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Oct 17 2010 at 9:11pm |
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To everyone going crazy on this forum, I totally understand. I just read the postings about
Avastin being the blame for either a stroke, a TIA, or Bell's Palsy, etc. on the other thread. To all the TNBC patients here taking Avastin this is one more thing to drive us crazy about. All of the chemicals they are giving us have "side effects" of one kind or another. Every medication we take comes with the "lovely" little pamphlet---read it and you'll never take anything.
The problem is we are the patients, for the most part not medically trained and sometimes
what we read on the blog is informative and other times down right terrifying.
Can't wait for Avastin tomorrow now!
Hummie
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Oct 17 2010 at 9:16pm |
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Mary, I understand exactly what you are saying. I was kicked in the leg by a 6 yr. old while just
playing around. Now I get to worry about the big bruise. It's everything. Numb feet,
neuropathy, mouth sores, over and over. I'm getting tired of chemo and will be glad when
that's done.
Hummie
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RegS
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Joined: Oct 16 2010 Location: Iowa Status: Offline Points: 9 |
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Posted: Oct 18 2010 at 7:26am |
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It's really good to know I'm not the only one. I asked about what would come after and was told mammo annually. I'm thinking that's what they recommend for everybody over 40, shouldn't there be a bit extra? Everything they say seems to leave me with doubts. My Gran had radical mastectomy in the 80's and a little pill after (not sure what but probably estrogen) saw her oncologist regularly, did everything she was supposed to and 7 years later her diagnosis it had returned in her lungs and ribs came the afternoon after she had died. My mother's doctor was still trying to find the correct dose of Lipitor for her cholesterol problem when they discovered it was cholangiocarcinoma (primary bile duct cancer) that was sending her liver enzyme tests wild in 2006. She died six weeks after her diagnosis. Doctors have not done anything to make me believe what they say. They haven't given me any reason not to doubt them. It's why I feel like I have to read where they aren't. I have more time than they do and more motivation.
My sterotactic biopsy was a mess. They nicked a blood vessel and I lay face down on the table for 35 minutes with breast compressed in the mammo paddles, then an extra 10 with hand compression. They wrapped me in an ace bandage with a pressure bandage under. I got a huge hematoma they delayed surgery and nobody will say whether they think it seeded the breast or not. I'm reading that TNBC travels more through blood rather than lymphatic system. That's just great. Everyone is saying size and stage trumps type of cancer but that's not what the newest articles on TNBC are saying. Add to this my twins (son and daughter) headed off to college the weekend after my surgery. Nothing is the same. Nothing is normal.
I've read some of the posts about finding"normal" after all this is done. I'm not sure there is an old normal again. |
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Regina
__________________________ Dx 7/10, DCIS, revised Dx 10/10 IDC Stage 1, Grade 3, 0/1N, .5 cm with microinvasion of less than .1 cm, lumpectomy 8/10, followed by 6 weeks of radiation. |
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Mary58
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Joined: Feb 13 2010 Location: Wisconsin Status: Offline Points: 161 |
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Posted: Oct 18 2010 at 7:46am |
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< id="gwProxy" ="">< ="ifofjsCall==''jsCall;elsesetTimeout'jsCall',500;" id="jsProxy" ="">
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Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 18 2010 at 7:48am |
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Regina,
I doubt we'll ever find the old normal again. We may get close, but our lives our forever changed. Adjusting to the new normal is something we all deal with after this diagnosis. I'm still working on it. You said they only plan on doing a yearly mammo. Some women have alternate mammos/MRIs every 6 months so they are being more closely monitored. Is this something you could have done? With TNBC being so aggressive, a yearly mammo may not be enough. I'd ask for some type of follow up monitoring (mammo, MRI, ultrasound) every 6 months for the first few years. Best to you, Donna |
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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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Mary58
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Joined: Feb 13 2010 Location: Wisconsin Status: Offline Points: 161 |
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Posted: Oct 18 2010 at 7:48am |
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I hear you Regina - There is not an "old" normal, what they are talking about is a "new"normal. While it may sound a little scarey, it also can be a "good" thing. We can't go back. How old was your grand when she died? I'm so sorry of those fear mongers in your head. I can only suggest that if you aren't happy with your doctor's response - that you look around or keep your eyes open for someone that might be more understanding. I am in the same position. I don't feel like I am getting what I need from my doc. You are in my prayers. Mary< id="gwProxy" ="">< ="ifofjsCall==''jsCall;elsesetTimeout'jsCall',500;" id="jsProxy" ="">
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Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
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Kay
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Joined: Feb 22 2010 Location: Atlanta,Ga Status: Offline Points: 6 |
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Posted: Oct 18 2010 at 8:27am |
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Hearing everyone's story brings me a bit of "normal" to my abnormal, if that makes any sense.
I was diagnosed in Dec. 2009 with "good cancer" ...doctor's term not mine. After the first lumpectomy, which was recommended, margins showed two additional tumors which were also removed via lumpectomy (again recommended by breast specialist/surgeon). Was referred to radiologist for 5 day site radiation...again, because I had "good cancer" and only after I asked for my hormone report (3rd request) did anyone notice the second two tumors were TNBC. Immediatey, of course, went from "good cancer" to chemo for 5 months and 33 rads. Two weeks after completing treatment, more cancer has been found in the same breast. I have an appt. with the Head of the Breast Ctr. tomorrow to discuss mastectomy. I am devastated and so very concerned that my body cannot handle more chemo so soon; something is wrong with my lungs with lowered oxygen levels and a persitent cough(docs all say it's radiation burns); and, that reconstruction will be compromised due to the radiation mess on my right breast. Skin has lost pliability and flexibility...can reconstruction even be done now?
I am so upset that I had the lumpectomy without knowing what my diagnosis was. A mastectomy would have been my choice of surgery had I known I had TNBC and how aggressive it is. Has anyone else had this experience? Has anyone had reconstruction after radiation? And, has anyone had chemo back to back within two months? Help!
PS...How do I start a new thread? Sorry to have popped this into this one.
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Kay
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Joined: Feb 22 2010 Location: Atlanta,Ga Status: Offline Points: 6 |
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Posted: Oct 18 2010 at 8:31am |
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ANother question. I want to change Doctors but cannot go through the agony of another stereotactic biospy (my body actually went into spasms from the pain last week). If I am consulting for a mastectomy and second bout of cancer within 10 months, are more tests needed I change docs?
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 18 2010 at 8:43am |
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Hi Kay,
Boy you sure have been through a lot in the past year. If only you knew the entire story/diagnosis at the beginning you could have made better decisions. We can't go back, only forward. It seems like you're ready to take charge of your care. Make sure you get copies of all your reports: lab work, pathology, scans, etc. Get a nice filing cabinet or tote to keep all your medical records and reports. I've heard it's difficult to reconstruct a radiated breast. The choices may be limited because tissue expanders don't usually work. I'd recommend working with a plastic surgeon that has lots of experience with women that have had their breasts radiated. To start a new thread, go to the upper left side of the screen and click on "TNBC Forums". Scroll down until you see "TNBC Talk". Once in that forum, you'll see a + sign at the bottom left of the screen. Click on that to start a new topic. Please keep us posted on your journey. Donna |
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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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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Oct 18 2010 at 9:15am |
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Kay:
I am so very sorry you have been put through all that you have. I too am in Atlanta, GA, and I have had the best care in the world. I owe my life and the swiftness of appts. with all the various doctors, etc. to all these fine people that have helped me through all this. I don't know who you were using, but if I could help in any way, I assure you, every doctor I use and the facilities where my surgeries, etc., were done - were excellent. Both my Breast Surgeon and her entire team, and my oncologist were both very learned in triple negative breast cancer. I see my oncologist every three months for total blood work and exam. Should I have any pains or problems lasting more than two weeks, she will automatically scan, if no complaints, just the three month visits. My BS I see every six months and she is with a all female facility where my mammo and US are read right there and then by the radiologists (also female doctors), and no horrible waiting for results. Anything dealing with the breast and diagnose of cancer is done in their large and impressive facility, breast mri, biopsy, etc. Just let me know if I can help in any way.
Linda
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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Kay
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Joined: Feb 22 2010 Location: Atlanta,Ga Status: Offline Points: 6 |
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Posted: Oct 18 2010 at 10:32am |
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Thank You for the responses! Linda, Please send me the names of your docs as I will be changing immediately. I'm very upset that my lumpectomy was recommended before hormone reports were in, so I've lost faith in my doctors....completely. My personal email is kmvanc@yahoo.com. I'm trying to get an appt. at Emory with surgeon who can do both the mastectomy and whatever reconstruction can be done to radiated skin. But, don't know any doctor in town who is a TNBC specialist.
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Sandra
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Posted: Oct 18 2010 at 11:53am |
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Did you change your diet or take supplements or anything?
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DX 1/14/10 TNB IIIC with one lymph 8 taxol 3 cisplatin 4/7 Dr cant feel tumor
occ in same breast and chest wall on 10/10 other breast and lymph Gemzar/Carboplatin lotto for Parp |
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Judior
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Posted: Oct 18 2010 at 12:11pm |
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Dear Kay, It sounds like you have had good advice! I am adding a link about a Hospital in New Orleans. They only do breast ! I am sure you could a plactic Surgeon in Atlanta that dose the same if you truly want reconstruction
Click here: Center for Restorative Breast Surgery This is interesting anyway! Judy
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6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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Kay
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Joined: Feb 22 2010 Location: Atlanta,Ga Status: Offline Points: 6 |
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Posted: Oct 18 2010 at 6:58pm |
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Can't really go out of town due to insurance PPO restrictions. But, I am researching all info from all sources, so thanks for the link.
And, yes, I changed my diet immediately upon initial diagnosis. I had never smoked, weigh 127 lbs. (5'4") and have always eaten relatively healthy foods. But, I read "The anti-cancer diet" book (a must read for everyone but especially if you've had a cancer diagnosis) and am now strictly organic with kale, carrots, cabbage, 6 different fruits shake every morning along with my oatmeal. I was shocked after reading the book, how many chemicals I've put into my body with "healthy" foods like non-organic broccolli, apples, grapes, etc. Also, exercised as often as chemo would allow (down for a few days, up for a week or so...you know the drill) and kept the meds given to me for chemo side effects to a minimum. Really thought I had beaten this beast, but, will begin my war again and realize now, the first round was just the first battle. Hopefully, this time it will be the battle to win the war!
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: Oct 18 2010 at 7:25pm |
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Donna
Why do some TNBC ladies get RADS when they are node negative and have a full mastectomy and clear margins? I had one renowned center say I did not need RADS and another less renowned insist that I did. She was trained at MD Anderson. For the newly diagnosed lady with TNBC I agree your physician is WRONG. I had negative nodes and a full double mastectomy and still had 20 weeks of Dose Dense Chemo. This disease certainly is sneaky. Also for Donna how did you get a PET Scan? The major Cancer Center I go to states that stage 1 TNBC does not need follow up by PET. Only blood tests and physical exam. I'm an RN I know that a standard blood panel doesn't tell much. Thanks for the answers if you ladies have any for me and God Bless All of you! Lori
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Oct 18 2010 at 7:41pm |
Dear Kay, Change of doctors per se should not require additional tests ordinarily. Make sure you request and keep copies of all tests from all doctors. That way, for second/third opinions as well as for changes of doctors you will always have your test results with you. |
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Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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cc4npg
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Posted: Oct 18 2010 at 9:33pm |
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My first appt with onc is 10/20, so I don't know what he'll recommend yet. But my diagnosis is a little odd too. After my biopsy, they said I had DCIS but were doing further staining. The next day, they told me I had IDC, triple negative. I had genetic testing and am BRCA2+. I had bilateral mx and final pathology found no residual invasive component. 0/3 nodes. All they found after mx was .9 x .8 cm DCIS. The biopsy said I had grade 2, with no lympho/vascular invasion. The biopsy didn't mention a size of the invasive part... it said it was too fragmented. I don't know what that means. I don't know what my Ki-67 rate is, but will ask about all that at my appt. I'm anxious to see what they recommend, especially seeing some of you didn't have chemo! Yes, chemo scares me too, the closer I get to the possibility, the more nervous I become.
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