TNBC & No Chemo??? |
Post Reply 
|
Page <1234 5> |
| Author | |
jenifer419 
Groupie 
Joined: Sep 18 2010 Location: Long Beach, CA Status: Offline Points: 44 |
 Post Options
 Thanks(0)
 Quote Reply
 Posted: Sep 22 2010 at 12:32am |
|
Thank you Judy! Yeah, I'm definitely going to fight this one! I'm a single mom of an 11 year old son, who's birthday happens to be tomorrow. He needs me here to keep him in line!
 I hope everything is going well with you. Take care, Jen |
|
|
DX IDC TNBC 9/10 age 38, Stage IIb, Grade 3, 4.8 cm, 0/4 nodes, Taxol x12, AC x4 completed 2/28/11, I-SPY2 trial, bilateral mastectomy w/ recon 3/24/11, cPR 4/6/11
|
|
 |
|
|
azmermaid853
Newbie 
Joined: Sep 19 2010 Location: Phoenix, AZ Status: Offline Points: 8 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 22 2010 at 1:20am |
|
Liz, I found that after my bil mastectomy I wasn't unable to lift myself out of bed, lay flat or sleep through the night until I got a recliner. I found an inexpensive chair at Big Lots, maybe a friend could lend you one during your recovery. I don't know what I would have done without mine.
They make a camisole that has pouches and there are pouches that velcro onto your bra that you can use to hold your post-surgical drains until they are removed.
The bra I was given rubbed on my incisions and was very uncomfortable. I found Jockey sports bras at Marshalls that have removeable pads, I took theirs out and put mine in and no one was the wiser. I can't even begin to tell you how much better that made me feel.
There are also post-mastectomy exercises at www.Livestrong.com that you can begin shortly after surgery.
I hope these little tidbits make your recovery that much more comfortable for you. I was surprised how much making these little adjustments changed my attitude, I was so much happier
 I have an appointment on the 30th and we'll see how that goes.
I understand that my cancer was small and that's why chemo was not recommended the first time, but with the recurrance so soon, I just can't agree. Hopefully I will get some good answers.
I hope your chemo is not to terribly rough on you and I wish you all the best sister!
Liz
|
|
|
|
|
outnumbered
Senior Member 
Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 22 2010 at 7:42am |
|
Liz: I am so glad your appointment is so soon, although it probably will seem to take forever. Try and keep yoursef busy. The time will go a little quicker that way.
Jen: It sounds like you have all your ducks in a row. When the time comes to schedule the mastectomy, please get several opinions from plastic surgeons. I am sure your breast surgeon works with more than one ps, so consult all of them. Then ask you breast surgeon who he/she would use for themselves or send their sister to. I too, hope your chemo goes easily for you. There is a page somewhere under resources and tips call chemo tips, you might want to search that out.
Judy: Thank you so much, but I am all opinioned out. I have had several including Dr Winer, and there is nowhere else to go after that. He is the best. I am over two years out. Sure it haunts me a bit, but for the most part I am on with my life and the fear is just part of my new normal. Its there, but it does not paralyze me. I guess I could search and search and find a dr who would give me chemo at this point, but I made the decision a long time ago that whatever Dr. Winer said would be the final word. I share about my fears and frustration about not having chemo as a way to help others in the same boat.
XO to all!
|
|
|
~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 22 2010 at 8:02am |
|
Jen,
I'm doing well. Thanks for asking. Please let us know what your onc tells you after the appointment. It's great you have a friend who can lend another pair of ears. My dh came to all my appointments and heard things I missed. It's so emotional at first that sometimes we can't comprehend everything they're telling us. At least you know about TNBC prior to your visit. My onc had to tell me about it, which scared the h*ll out of me. Great news about the PET scan. Donna |
|
|
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 |
|
|
|
|
azmermaid853
Newbie
Joined: Sep 19 2010 Location: Phoenix, AZ Status: Offline Points: 8 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 22 2010 at 11:36am |
|
Sara, I'm righ there with you, I chose the bil mastectomy so I too could get on with my life. I will seek out additional opinions but at some point will have to make a decision as you did. My cancer was small, so good for me for catching it early and keeping on top of it. Yay for me. I'm back to work so I keep very busy, I'm fortunate to have the ability of working from home.
Donna, I'm glad to hear that you are doing well. Keep up the good fight.
_______________________________________________________________________________
4/2009: Extensive in situ ductal carcinoma high-grade with comedo necrosis and 1-2 mm isolated foci of invasive ductal carcinoma grand II/III with biopsy changes.
5/2010: In situ ductal carcinoma high grade with comedo necrosis and focal grade III/III microinvasive ductal carcinoma with healing biplsy site. |
|
|
|
|
lmc1970
Newbie
Joined: Sep 15 2010 Status: Offline Points: 2 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 28 2010 at 3:34am |
|
Just thought I'd share my experience with chemo. I was diagnosed four years ago at 36-my tumor was 9mm and I decided not to have chemo. Three years later they found 15/24 nodes with cancer. I decided to have chemo out of fear but when I ended up in hospital after nearly dying with the first dose I decided against it again. I've been diagnosed this week with cancer in the supraclavicular nodes. I'm not sure if it has spread any further yet. This came exactly 4 years to the day of my first diagnosis. I'm not convinced that chemo works...but I am not going to kill myself trying to find out. Thankfully it does work for some and that is great! Goodluck to everyone on here. Although TNBC is not a blessing...being able to have amazing support from amazing people is :o)
|
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Sep 28 2010 at 9:00am |
|
azermaid,
There is a bit of misunderstanding, I think, when part of the dx is DCIS (it always sounds
better). Part of my dx was that also, however, and it's a big however. The fact that the
cancer "traveled" means that more was going on than ductal carcinoma in situ. Obviously,
like my, it traveled outside of its little "enclosure" to get where it is now. Just thought
this might help you understand as this perplexed me, and I questioned both surgeon
and onc about it. My traveled to a couple of nodes, so DCIS was not the whole story.
Yes, DO get a second opinion. Mayo sounds good if it's close. And, no, I see no reason
to get more follow ups with someone who doesn't want to give you standard of care
after reading what you posted.
All the best,
Hummie
|
|
|
|
|
lisa k
Groupie
Joined: Nov 20 2009 Location: illinois Status: Offline Points: 47 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 13 2010 at 12:42pm |
|
I will be reaching my one year anniversary 10/26 and I also DID NOT receive chemo!!! It makes me nervous since that seems to be the plan of care for TNBC but for now I have to believe in my onc and hope she is correct!!!
|
|
|
44 yrs old
Dx: 10/26 Surgery: 11/17 Lump (clear margins, Sent. node biopsy 0/7) Stage 1 Invasive DCIS (invasive portion grade 2, non-invasive grade 3) TNBC KI 67 - 5% Treatment - 6.5 wks rad |
|
|
|
|
azmermaid853
Newbie
Joined: Sep 19 2010 Location: Phoenix, AZ Status: Offline Points: 8 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 13 2010 at 5:58pm |
|
@Lisa, I know exactly how you feel, I wondered about it the first time around also. I asked them to explain it to me and it seems that I may have had a small undetected cancer in another duct that grew to 6cm of DCIS with microinvasion. I'm told there is no chemo for DCIS and that chemo is not recommended for the small microinvasion that I had. I've since discussed my recurrance with my oncologists and we have opted for a PET scan, which I had this morning, if that comes back clear then I think I might be okay with no chemo however the jury is still out on that. She did give me the chemo paperwork and will do it if I push the issue. I'm awaiting my results which I should have early next week and then will make my decision. I hope that all is well with you and keep getting those mammograms, I wish for you a lifetime of good health!!!
|
|
|
|
|
lisa k
Groupie
Joined: Nov 20 2009 Location: illinois Status: Offline Points: 47 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 13 2010 at 6:33pm |
|
I WISH YOU LUCK!!! PLEASE LET ME KNOW YOUR RESULTS AND DECISION!! FIGHT LIKE A GIRL!!!!
Lisa K.
|
|
|
44 yrs old
Dx: 10/26 Surgery: 11/17 Lump (clear margins, Sent. node biopsy 0/7) Stage 1 Invasive DCIS (invasive portion grade 2, non-invasive grade 3) TNBC KI 67 - 5% Treatment - 6.5 wks rad |
|
|
|
|
RegS
Newbie
Joined: Oct 16 2010 Location: Iowa Status: Offline Points: 9 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 2:40pm |
|
I had researched TNBC after my surgery before speaking to oncologist. He too said it was stage and not type that determined treatment. I received no chemo. He actually looked at me puzzled and said, "Are you actually asking for chemo?" I felt stupid and didn't push it. I chose a lumpectomy and radiation based on what they were telling me. My insurance company has a free second opinion service that acutally pulls the pathology and gives it a second look; not just the pathology report. Turns out there was a place of microinvasion, and here all these metrics confuse me, I was .5 cm so that's 5 mm right? and the microinvasion was .1 cm so that's 1 mm? Is this enough that I should be concerned at not getting the chemo? I put the questions to everybody that this kind of cancer was very aggressive and had a high rate of recurrance distally, most often in the brain and lung and everybody poo pooed my concern. It was just DCIS, no big deal, it was a baby cancer, a want to be cancer, not really cancer at all. But then when the second hospital looked, it was cancer, although they said it wasn't much so same treatment plan advised. They were wrong before. Are they wrong now? I'm looking at other posts where people had "baby cancer, want to be cancer" and they are dead now because of recurrances. Yes, I'm freaking out. Should I be throwing a fit to have chemo?
|
|
|
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. |
|
|
|
|
Judior
Senior Member
Joined: Apr 22 2010 Location: Columbus,Ms Status: Offline Points: 153 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 3:10pm |
|
Reginia, I really cannot tell you what to do! I think you know what I would do! Take Care Judy
|
|
|
6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
|
|
|
|
|
SagePatientAdvocates
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 3:18pm |
|
Dear Regina,
I think you should a second opinion from a TNBC savvy oncologist... This may entail taking a trip if that's feasible..below are some National Comprehensive Cancer Centers I am not a doc but I believe most oncologists would recommend chemo with TNBC of your tumor size...and they would recommend it because TNBC can be very aggressive so I believe type does matter. all the best, Steve |
|
|
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 3:21pm |
|
other resource...
all the best, Steve
|
|
|
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
|
|
|
|
|
unklez
Senior Member
Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 3:33pm |
|
Dear Regina,
Please do take Steve's advice and get a third opinion at an NCCN center. |
|
|
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.
|
|
|
|
|
lisa k
Groupie
Joined: Nov 20 2009 Location: illinois Status: Offline Points: 47 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 5:49pm |
|
OK...you guys are all making me nervous BECAUSE I did not receive chemo either!!!!!
|
|
|
44 yrs old
Dx: 10/26 Surgery: 11/17 Lump (clear margins, Sent. node biopsy 0/7) Stage 1 Invasive DCIS (invasive portion grade 2, non-invasive grade 3) TNBC KI 67 - 5% Treatment - 6.5 wks rad |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 16 2010 at 8:45pm |
|
Dear lisa k,
Please focus on today and tomorrow...can't turn the clock back BUT in my unprofessional opinion you need to consider getting a second opinion and find a Breast Medical Oncologist who is knowledgeable about triple-negative breast cancer. There are several excellent facilities in Chicago and I can try to help you find a physician if that trip is doable for you. I am not a medical professional and will never give you medical advice. I am a patient advocate on a volunteer basis. Please do not rely on anything I say. Rather, please try to see a Breast Medical Oncologist at a Comprehensive Cancer Center. not sure of your geographic location but the other excellent facility is University of Michigan Comprehensive Cancer Center in Ann Arbor. I have absolutely no idea what they will tell you but I think it is important that you seek someone who can advise you and monitor you now. Normally, after a lumpectomy that showed TNBC with an invasive component, it is my unprofessional understanding that chemo is started six-eight weeks after the procedure and then radiation therapy, if advised, is started after that and the radiation therapy is generally 6.5 weeks. Almost a year has passed and if you are NED (No Evidence of Disease) now, I doubt they will want to do chemo now. It is my understanding that when you have invasive triple-negative breast cancer you should have chemotherapy. It's great that you had zero lymph node involvement and clean margins and hopefully all will be well. Again, I don't think there is any point in agonizing over the past but I feel you should seek another opinion and make sure you are monitored aggressively. Also, you were <45 years old when you were diagnosed. Were you advised to see a Certified Genetic Counselor for counseling/possible testing for the BRCA mutation? Most insurance companies will pay for the BRCA test if you are <45 at the time of diagnosis, even absent a family history. By the way, do you have a family history of breast/ovarian cancer? I am sorry, this was an extremely difficult email for me to write and I am sure for you to read. Sounds like you are healthy and again all you can do is look today onward. I debated about writing you but I felt it was better to honestly tell you how I feel even though it will be upsetting for you to read. I hope you understand. If you would like to talk please send me a PM I will send you my contact information and then hopefully we can connect. good luck to you!!!! all the best, Steve Edited by steve - Oct 16 2010 at 8:52pm |
|
|
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
|
|
|
|
|
Sugar77
Senior Member
Joined: Mar 09 2010 Location: Mississauga Status: Offline Points: 115 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 17 2010 at 3:00pm |
|
I recall my oncogist telling me there is a 12-week window from surgery for starting chemo. In my case, I was at 9 or 10 weeks out from surgery when I started chemo. My tumour was tiny (.35cm) in with high grade DCIS. I go to a large regional cancer centre and my oncologist specializes in breast. He recommended four rounds of TC even though the tumour was small. I was 45 at diagnosis.
|
|
|
DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.
|
|
|
|
|
Mary58
Senior Member
Joined: Feb 13 2010 Location: Wisconsin Status: Offline Points: 161 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 17 2010 at 5:53pm |
|
Hi Lisa and Regina - I too was freaking out when no chemo was offered to me. They had the same response - "Well, I can give you chemo if you want me to", "but I wouldn't recommend it". I got second and third opinions - all the same. My cancer was the same size 5 mm. I think there are more of us out there who haven't had chemo. I met someone online that we are talking, comparing, supporting from this forum. Same situation. I will be nine month survivor next week -
Good luck - try not to freak out - but I know I did at this stage too. I am busy living my life and hoping for the best. I've added supplements, exercise and some diet changes. I consider this to be my chemo. Best of luck to you. There are more out here than you think. < id="gwProxy" ="">< ="ifofjsCall==''jsCall;elsesetTimeout'jsCall',500;" id="jsProxy" =""> |
|
|
Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
|
|
|
|
|
hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
Post Options
Thanks(0)
Quote Reply
Posted: Oct 17 2010 at 6:05pm |
|
open question to anyone who would like to answer....
The dryness from chemo is driving me nuts. I'm using Biotene and Magic Mouthwash and
drinking liquids. What else can I do??????? Please help.
Hummie
PS: Have had the A-C 4 rounds and done with that! Have had 3 Taxols and on the
placebo/Avastin trial.
|
|
|
|
Topic Options|
Post Reply
|
Page <1234 5> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |