Welcome New Members - never liked clubs

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never liked clubs

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=9142
Printed Date: Mar 26 2026 at 8:07pm
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Topic: never liked clubs

Posted By: yankee
Subject: never liked clubs
Date Posted: Oct 10 2011 at 12:00am

Hi, My name is Sandy. I never liked clubs. Thought they were exclusionary. This club is one I hope whose membership will be soon declining. I am a newbie. I had my lumpectomy 9/30. So far I know I am grade 3, TN, no lymphnodes, clear margins, one narrow (which we get clarification on tomorrow, Nurse Navigator didn't know if re-excise was needed) two tumors 1.2 cm, 1.5 cm. No family history. Statistically wouldn't think would get breast cancer. However, 3 years ago 10/5 received a kidney transplant. Side effects of Immunosuppressant medications are cancer, unusual for breast cancer though. My medications have been adjusted to allow my immune system to help slow the cancer growth and hopefully not attack my graft kidney.
I am looking forward to tomorrow to know that step one is done, and the next step can begin. Should be Chemo.
Generally I am upbeat and positive and energetic. Tonight I feel melancholy. Unhappy

I have been reading these posts and do find them helpful. thanks for being there. And providing much needed support and information. It reinforces and clarifies the things I hear from the specialists.

Thanks

Replies:

Posted By: cheeks
Date Posted: Oct 10 2011 at 12:10am

Hi Sandy and welcome.

I had my surgery and chemo in 2009 and it took me until recently to really participate - I came to the site many times and read a little, cried, took a break, read some more but wrote nothing for quite some time - so, you are ahead of me there. I have found the people here to be warm and caring and full of all kinds of information. Not a club i wanted to join as I have never joined clubs either but I am grateful for this one. I will be thinking about you tonight. My best to you for a safe journey through this time in your life. Thank you for letting us know how you are doing.

Blair

-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.

Posted By: 123Donna
Date Posted: Oct 10 2011 at 7:53am

Sandy,

Welcome. This is one club none of us wanted to join, but so glad we have each other for this journey. Please let us know what chemo they'll be recommending. Ask questions, vent or whatever you need. We'll be here for you. Have you had your Vitamin D level checked? Most of us with TNBC have extremely low levels at diagnosis. Have you seen this link about a study Denise posted?

http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771_page1.html%20 - http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771_page1.html

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

Posted By: SagePatientAdvocates
Date Posted: Oct 10 2011 at 8:07am

Dear Sandy,

I would like to add my welcome to the beautiful one that Blair just sent you...

I have a couple of thoughts-

Try to stay positive and find the beauty in each day.

Also, please try to make sure you are getting advice from someone who understands TNBC. If possible, I would suggest seeing a Breast Medical Oncologist at a NCCN or NCI facility. I am not saying your current oncologist does not understand TNBC and you may be going to a NCCN or NCI facility, already. If you are, I would still seek a second opinions; I think they are very important, if you can manage it, even if all the second opinion reconfirms the first. I think there is some comfort in that.

Also, I think you should consider seeing a Certified Genetic Counselor to make certain that your TNBC does not have a genetic component. Even absent a family history of cancer many women have tested BRCA+. The latest NCCN guidelines suggest that every woman under the age of 60 with TNBC be tested for the BRCA mutation. Because of this guideline. most insurance companies will pay for the testing (which is expensive around $3400) even absent a family history.

I am glad you have joined our ‘club' and I hope you find some support here. We have a beautiful, caring family.

welcome,

Steve

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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

Posted By: Barbi
Date Posted: Oct 10 2011 at 10:10am

Welcome to the club, Sandy, and to this site. Sorry you need to be a member. But hope you find this site helpful and best of luck in your treatment.

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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.

Posted By: TNBC_in_NS
Date Posted: Oct 10 2011 at 11:12am

Hi Sandy and Welcome to our site!

We have a wonderful mix of ladies and gents who have been where you are right now and they offer us so much information! I was diagnosed in 2009 as well so this has been a journey for me.

We have various forums inside threads so just browse for the information you are looking for. We also have a wonderful brochure that explains triple negative breast cancer.

http://www.tnbcfoundation.org/TNBC%20Brochure.pdf - http://www.tnbcfoundation.org/TNBC%20Brochure.pdf

Welcome and post often there is always someone on line that can check in with you.

Helen in NS Canada

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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear

Posted By: cheeks
Date Posted: Oct 10 2011 at 11:32am

Hello again Sandy,

I hope you slept well last night.

As Donna posted my vitamin D levels were also very low.

Steve suggests the genetic counseling which is an excellent idea too.

I had to "fight" some to get mine done as I am the first in my family as far as we knew. There were a couple of factors that complicated things. My maternal grandmother is adopted and age 93. I never met my maternal grandfather and knew very little about him. My "step-grandfather" is the only one i have ever known. BUT my mom did tell me her dad was from the Bay Islands of Roatan but when her parents divorced when she was 12 she had no further contact with him or his family. My research began...no luck on my grandmother's adoption (she doesn't even know she is adopted) but I was able to find the name of an aunt which in turn led me to the name of my mom's grandfather who she had never met. I found an online geneaology group for the Bay Island of Utila (very small) off the coast of Roatan where I found people to be very helpful and actually have connected with some 2nd cousins of my mom's. I've been sent birth, death, marriage certificates etc. - all handwritten in Spanish. Although from what I can now tell my original ancestor who settled there in the 1800's was actually an American there could of at some time been an intermarriage with the islanders. This qualified me for BRCA testing (I understand this is changing for Triple Negative patients so it shouldn't be so difficult)

My second "fight" came with my insurance company saying that the lab doing the testing would be out of network for me and I would first have to meet a $4500.00 deductible! So, in effect, I would have to pay cash. Of course, I argued that there are few labs in the US that do the testing so how could it possibly be out of network? I asked for a supervisor and was told the same thing. I then called the lab itself in tears...their answer was, "Blair, of course it is in network and covered at 100%. " My insurance company was only searching out 50 miles from me for the lab and didn't find it. This is what I was told when I called them back...i also requested they make some changes to their system so another woman would not have to go through such a hassle. Not everyone is as persistent as I can be.

This all really shouldn't be necessary and i'm sure it does not happen to everyone but i wanted you to know that there can be quite a few hurdles in addition to our decisions about surgery and chemo treatments and to not get discouraged about any of it - I can already tell you are a "fighter".

Blair

Posted By: yankee
Date Posted: Oct 10 2011 at 3:22pm

Thanks for the warm welcome. I have to have surgery again on Wednesday to get cancer out of that narrow margin. Other than that little bump, the plan is the same. I am to meet about the Chemo and meet the radiation doctor at the same time I go back for my two week post-op. I will be scheduled for my port to be inserted too.
My labs regarding my kidney status have not been reported back to me yet. Interesting about vitamin D. My meds for my transplant strip me of potassium and magnesium which I need to take supplements every day. I will ask if those tests check for vitamin D. Thank you

Posted By: Lillie
Date Posted: Oct 10 2011 at 5:37pm

Hello Yankee,

Welcome to the club.... I'm not a club joiner either (always though they were clicks) and I am not a click joiner....

Believe me this is a whole new experience for all of us. We are so thankful to have this site and each other sharing and caring and praying and listening and understanding, when no one else does.

So Glad You Posted and keep us up-to-date on your journey.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: abcmom
Date Posted: Oct 10 2011 at 6:36pm

Welcome Sandy-

Yep, I was a never a club goer either, but this site and people here have been such a blessing!

Hugs, Keri

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Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11

Posted By: rigatonismom
Date Posted: Oct 10 2011 at 8:36pm

Me neither, but the people here are family instead of a club.

Nita

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DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11

Posted By: BamaRachel
Date Posted: Oct 11 2011 at 9:27am

Welcome, Sandy. I don't think any of us want to be a member of this "Club", but, as one of the other posters said, this is really more like a family. Everyone here is so supportive and full of information. I had breast conserving partial mastectomy (lumpectomy with clear margins) on July 21, and yesterday I finished my fourth chemo treatment of Epirubin/Cytoxan cocktail -- YAY. In a couple of weeks I will start Taxotere for four treatments. Then will have radiation (probably beginning in January). While this is not an easy journey, I've found that having a strong support system around you and this forum to give you the information you need is invaluable to keeping a positive outlook. Since my diagnosis, I've come to realize just how much I am loved -- and by people who I had no idea cared for me or for my long-term health. People really want to help in times like this. My advice is to let them!!! Do not be afraid to talk about your health or ask for help. People want to help. Because of all the help, love and support I've gotten, my goal is to "play this forward in the future". God forbid, but should one of my friends come down with the dreaded disease of cancer, I WILL be there for them -- just like my friends and family have been here for me. We don't truly realize what people go through in this journey until we've been here ourselves!! You can do it. Good luck with your surgery tomorrow.

Posted By: yankee
Date Posted: Nov 08 2011 at 6:09pm

I started my Chemo on 11/2/11. So far, so good. A little this, a little that. didn't like the muscle and bone pain much, or the fever that played games with me for a day. But must say I feel fortunate. Next chemo is 11/23/11. My breast is still healing from the two surgeries. I am sure when it has healed I will feel much better there too. I hope everyone is doing well.

Posted By: abcmom
Date Posted: Nov 08 2011 at 6:17pm

Welcome and hang in there, we are here for you!

Hugs, Keri

Posted By: Suze35
Date Posted: Nov 08 2011 at 6:19pm

Sandy - it sounds like you are hanging in there, that is good. Are you starting with Taxol or AC? The bone pain can come with Taxol, but also with a Neulasta shot if they are giving you one after AC. Be gentle with yourself, and keep an eye on that fever - those can spike quickly!

Keep us posted on how you are feeling - and if you have any questions or concerns!

Best,

Susan

-------------
9/2010 Stg IIIa, AC+T and Carbo
July 2011-Xeloda+Avastin
9/2011 Stg IV-nodes, bones, liver
10/2011-Abraxane/Tig trial - Abx arm
11/2011-progression, Tig/Abraxane
12/2011-Off trial - Eribulin

Posted By: yankee
Date Posted: Nov 08 2011 at 6:31pm

Hi Susan, I tried to enter a signature to show me! Let's see how I did. I do have a question. What's with the white tongue? Did you have that?
Sandy

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DX 8/30/11 Stage I Grade 3 two tumors 1.2 and 1.5 cm,lumpectomy 9/30/11 re-excision 10/14/11, chemo Abraxane Cytoxan, kidney transplant 11/08

Posted By: yankee
Date Posted: Nov 08 2011 at 6:34pm

Thanks Keri, I am trying to stay positive! I want to save my kidney too. It has been very good to me for 3 years and I want it to last me a lifetime!

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DX 8/30/11 Stage I Grade 3 two tumors 1.2 and 1.5 cm,lumpectomy 9/30/11 re-excision 10/14/11, chemo Abraxane Cytoxan, kidney transplant 11/08

Posted By: Suze35
Date Posted: Nov 08 2011 at 6:43pm

Your signature is perfect! Abraxane is a good drug - quite a work horse, and the side effects aren't as bad as Taxol. The white tongue is yeast - be sure to tell your doctor about it, as you can easily develop mouth sores that are painful. There is a special mouthwash they can give you to help with it - you don't have to suffer!

Susan

Posted By: yankee
Date Posted: Nov 08 2011 at 6:54pm

will call them tomorrow. thanks

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DX 8/30/11 Stage I Grade 3 two tumors 1.2 and 1.5 cm,lumpectomy 9/30/11 re-excision 10/14/11, chemo Abraxane Cytoxan, kidney transplant 11/08

Posted By: Lillie
Date Posted: Nov 08 2011 at 7:23pm

Dear Sandy,
So good to hear from you again. Sounds as though you have been through a lot and still have a ways to go. I will keep you in my prayers concerning your kidney, and complete and permanent remission with the chemo.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: BamaRachel
Date Posted: Nov 08 2011 at 10:51pm

Sandy, it's good to hear from you after your treatment. I too have had the "white tongue" stuff. The Magic Mouthwash that the doctor can prescribe for you works good. Watch, too, for those fever spikes. I've ended up in the hospital twice in the last six weeks because of low counts. After last week's treatment (1st Taxotere), I started running a fever on Day 4 and instead of going to the hospital, I stayed in the house for five days. Just got out today for the first time in almost a week. Be careful around others, especially if they have any signs of sickness.

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.

Posted By: yankee
Date Posted: Nov 12 2011 at 5:30pm

Thanks. They put me on Cipro for 7 days for low white blood count and the fevers. The fevers ended a day before they gave me the Cipro. I still am taking my temp twice a day and watching.

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DX 8/30/11 Stage I Grade 3 two tumors 1.2 and 1.5 cm,lumpectomy 9/30/11 re-excision 10/14/11, chemo Abraxane Cytoxan, kidney transplant 11/08