Go To Main TNBC Website


  New Posts New Posts RSS Feed - Afraid to ask
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Afraid to ask

 Post Reply Post Reply Page  <12
Author
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12894
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2012 at 11:44pm
Romey,

You've been offered some excellent advice.  Good luck on your appointment tomorrow.  Please let us know how it goes.  Do you have someone that will be going with you?  I found it so helpful to have someone there to be able to help me ask my questions and listen to what is being said.  A recorder is especially helpful, but I never seemed to remember to bring one!  We'll be thinking of you.

I don't know if you'll see this post before your appointment, but when they talk about chemotherapy, you might want to ask if they'd recommend adding a "platinum" chemo, like carboplatin or cisplatin.  Some studies have shown that platinums are effective for TNBC and BRCA+ women.  There are some clinical trials that are using platinum drugs in the neoadjuvant setting.

I hope you can take Steve up on his offer to help with a 2nd opinion.  Steve's amazing and offers so much support to all of us.  A 2nd opinion at an NCCN facility, like John Hopkins, might give you some more information regarding your treatment options.  My one regret when I was diagnosed is that I didn't seek more than one opinion.  (I didn't find this forum and these wonderful people until after I had surgery and started chemo.)   

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

Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2012 at 12:55am
Romey,

Yes, of course, we wish you luck Friday.

More important you have knowledge.......about TNBC, the importance of getting pros and cons of
      your options, the importance to consider a 2nd opinion, the importance of asking questions.......
      and knowledge is power.

I just read Donna's post above.
Hopefully, you will be able to see the certified genetics counselor. Think you had mentioned something
like a "PET consultation" which would include seeing the genetics counselor. It would be good if you
can get an idea of your BRCA risk (due to your mother and sister's cancer history and your age)
from the counselor.   An idea of your risk , that is, until you have the actual test (will be optimistic that
your insurance will approve it).   Mentioning this as your BRCA risk information might help your physicians
in determining the best treatment plan for you.

If your head is spinning with all the information you are trying to absorb and all the things that are
happening, please know things do fall into place and one does feel somewhat better once there is a treatment plan.


Sending you plenty of caring and supportive thoughts for Friday's appointment.

Grateful for today.............Judy
Back to Top
ashbash View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 11 2012
Location: MI
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote ashbash Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2012 at 3:10pm
I have an idea of what you feel like- I just got diagnosed July 13, 2012, (ironic that the date was Friday- 13) and have been going through a lot as well- I have had 3 surgeries so far, a lumpectomy, a partial mastectomy, a port put in, and 2 sentinel lymph nodes taken out and I just finished a surgery on Thursday, they took out 14 lymph nodes and found no cancer in the 14 they took out! Amazing news after receiving all the bad news. I transferred over to the University of Michigan hospital where my current doctor confronted me about this. I have triple negative breast cancer, I am 24 years old, the only people in my family who had breast cancer were great aunts, so it was interesting when I found out I had cancer. The doctor told me that her recommendation given my age, the size of the tumor (4.3 cm) and the fact that it was an invasive cancer, wants me to get a BILATERAL mastectomy. When I first heard this I couldn't believe it! It is a lot just to deal with cancer but then to have to go through all this and she also told me I would need both chemo and radiation! Its a lot to deal with. She did tell me the reason she wants the mastectomy is because of every year that I get older, there is a 1% chance of the cancer coming back, and not only on that side, but the other. I will be getting the bilateral mastectomy after radiation so I don't feel lost- they will do reconstruction right away. I don't know if that helps at all, it could be that I am a special case given my age and other factors, but I hope everything goes well for you! Have you started chemo treatments? If so, how are they going? I have heard many scary stories and I am supposed to be starting in about 3 weeks. Let me know how things go! You will be in my prayers!
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4456
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2012 at 3:41pm
Dear Ash,

Welcome to our TNBC Foundation family. I am very, very sorry you have need to be here, especially at such a young age. My daughter was diagnosed with TNBC when she was 36, 8 years ago and she is fine, now, after having several surgeries both breast and gynecologic.

You did not mention the BRCA mutation. I am assuming (always dangerous to do) that you were informed about the mutation and met with a Certified Genetic Counselor. The University of Michigan has an excellent high risk clinic and I want to make sure you are aware of the mutation. We were not aware as you can see by this story-


You have assimilated a lot of very difficult information and have a lot to deal with. We will try to be there for you as best we can. I love the members of our family. Lovely, caring, knowledgeable folks.

One thought and you may have seen her already but if you can get a consultation with Dr. Lisa Newman at UM I would suggest it. She is a brilliant researcher, surgical oncologist and a wonderful woman. I am honored to call her a friend. I think she can help put everything in context for you and please tell her I say hi. She is on the TNBC Foundation Medical Advisory Board.


Please try your best to try and find the beauty in each day...and some days that may be a real task but please try. I have been told by many women I have helped that it helps. 

I am a volunteer patient advocate and I am going to send you my contact information if you would ever like to talk. I am not a medical professional and I will never give you medical advice but maybe it would be helpful if we could talk? And if we do speak, it will be kept confidential.

Good luck to you as you start this arduous journey but you can get through this....

warmly,

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
Back to Top
 Post Reply Post Reply Page  <12
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.