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Need to help my mom

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    Posted: Jan 05 2012 at 12:49am
Hi,
My mom has been diagnosed with triple negative breast cancer in the US and I am in Canada trying to understand the differences, sort through tests, treatment options, and why my mom can't have the same treatment that my friends tell me they have heard about. The 2 major things that I am confused about are why they want to start chemotherapy before scanning her body for cancer elsewhere and why the doctor can't stage it before surgery. She has had a biopsy and mri of her breasts but insurance won't cover a PET scan until they stage it and she has not had a full body scan. I am concerned after reading all of the clinical info that they aren't investigating further before treating. The MRI showed something in her other breast so she will have another biopsy but wouldn't they make it a priority to make sure it hasn't gone anywhere else? Please forgive me if my questions seem simple or if my terminology is off, still learning about all of this.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 7:08am
Dear Mouse,

Welcome to our family and sorry you have need to be here. It is very important you understand as much as you can so that you can help support your mom.

it is extremely important, in my view, that your mom see a Breast Medical Oncologist who is TNBC savvy.

Where does your mother live? Perhaps we can suggest a place to go to get a second opinion.

also I am sending you my contact info if you would like to talk.

Also, how old is your mom? If she is <60 she should see a Certified Genetic Counselor with a view to getting tested for the BRCA mutation, as suggested by the NCCN guidelines. If she is over 60 and has a profound family history of breast/ovarian cancer she should also see a CGC.

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mouse Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 10:15am
Thanks Steve, my mom lives in Hendersonville, TN and is 56 years old. She did get tested for the gene but has to call the office to get results which both my sister and I are anxious to hear. I am going to get all of her doctors' names and do some research. Please re-send your contact info, I will call you this morning.
Thanks again,
Michelle
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Post Options Post Options   Thanks (0) Thanks(0)   Quote indy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 1:04pm
Dear Mouse,

I too was to start chemo wthout a pet scan when I asked for one,  my treatment center has a coordinated team who decided one was not needed.  My oncologist over rode them and would not start chemo until I had one which showed NED(no evidence of disease).  Keep persisting and be a pest if you have to,  having overcome all the obstacles they threw in my way(they are good people but sometime we patients have to have things the way we want them), it is worth the try.  I will pray for you and your mom.  Regards, Joan
Diagnosed 9/2011 at 58 TNBC node neg lumpectomy chemo X4 AC chemo X12 Tax, rad 30 treatment starting 11/14 all genetic tests negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote questhaven Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 1:47pm
Dear Mouse,

My heart goes out to you - I found out yesterday that my Mom also has triple negative invasive ductal breast cancer and I feel totally lost. I'm in California and she is across the country in North Carolina - the distance makes it so much harder. I'm going to try to get the number of her doctors so I can ask questions directly - I'm so worried of stressing my Mom out! I don't have a lot of information yet either, but I am here if you want to talk.

Michele
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2012 at 12:52pm
Dear Mouse:
I am so sorry to hear about your Mom! I too was her age when diagnosed.  I am still here!
I am also in Canada! Nova Scotia... If you want to chat send me a PM and we can talk about whatever you want. 
 
We have a wonderful Spiritual Forum here and Carol heads it up with Readings each day.  She is in TN too! My son lives in TN as well.  Steve is in California and is a wealth of knowledge and has been a right arm to me and others here. You will learn much and all will be well. 
 
Trust that you will be able to help your Mom in many ways even through the miles.  My son & his family were instrumental in my healing and strength and he too is in TN.
God bless,
Hugs, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2012 at 12:54pm
Dear Michele:
What I have written for Mouse, the same goes for you my dear.  Have faith and know that things do work out...Bless you and your Mom on this new journey.
Hugs, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lawaz Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2012 at 1:27pm
Mouse,

I'll tell you my understanding about the things you mentioned. I have TNBC and was diagnosed in August, with stage 3a, grade 3. I had a lumpectomy and have been in chemotherapy treatments since September. It can all be confusing and if you are concerned, you can post questions to John's Hopkin's website at: http://www.hopkinsbreastcenter.org/services/ask_expert/ . I explained my situation and my doctor's plans twice to see if they agreed and they responded the same or next day both times. 

There are 3 main types of breast cancer, those whose growth are affected by estrogen or progesterone,by her2 proteins and those whose growth do not seem to be affected by any of the three (triple negative). There are treatments available for the others that limit the effect of estrogen/progesterone and Her2, that will not have any effect on those with triple negative cancer. It may be that the treatments your friend has heard about are effective for one of the other types. With triple negative, chemotherapy is the only effective treatment available right now. 

I still haven't had a PET scan and am getting ready to finish chemotherapy next week. After that, I will be insistent on having one to see if there are signs elsewhere. In my case, the disease was progressing rapidly and their biggest concern was getting me started on chemotherapy immediately. My doctor informed me that anything they found would not change how they planned to treat me and since he would want one at the end, he didn't want to subject me to any unnecessary radiation. 

As for staging, it will be hard for them to stage the cancer until they can see: the exact size of the tumor, it's infection into surrounding tissue, and until they remove and biopsy her sentinel nodes (under her arm). Many doctors, mine included, like to do neo-adjuvent chemotherapy (before the surgery)for stage 3 triple negative cancer so they can see how well the cancer is responding to the chemotherapy (by watching to see if and how much the tumors shrink). In my case, he changed his mind based on some other involvement that the surgeon informed him would not be accessible to remove if it shrunk and went the unorthodox route of starting chemo only 2 weeks after surgery and doing the surgery immediately. Most doctors will not do this because of infection risks and will make you wait at least 4 weeks after surgery. That's another reason many choose neoadjuvent so they can start chemo right away. Since they do not do the surgery until usually at least half-way through the chemo, they cannot stage the cancer completely until later. 

So, it doesn't sound like they are doing anything inconsistent with treating TNBC, but if your mom is uncomfortable with proceeding, I agree with everyone that confidence in treatment is first priority and she should find a specialist. I was ok with the decisions the doctors were making and their reasons, but there have been a few times I didn't agree and I either got a second opinion from the doctors at John's Hopkins or, just recently, I switched to one I felt shared my desire to be pro-active even post-treatment.

You're being a great support asking questions and I'm sorry this was so long. Hopefully it helped a little.

Lee Ann


Edited by lawaz - Jan 07 2012 at 4:15pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mouse Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 8:45am
Hi all, I just got back from a visit with my mom & was able to attend her 1st chemo treatment, meet her dr & be with her for a few days. Her oncologist called the insurance director while I was there and mom is scheduled for a PET scan this week! I'm so proud of my mom, she has really got a handle on this and now she can focus on being well, go with the flow and not have a feeling of total uncertainty. I am sure that she will win this battle. Thanks for all the support.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 11:48am
Dear Questhaven (Michelle)
Where in North Carolina does your mom live? I am a five years TNBC survivor and I also live in NC. I am just wondering if we are anywhere near each other.
I am so sorry you and your mother are so far apart. If you could speak with the doctor, I'm sure it would help a lot.
Do you have any of the specifics about her diagnoses yet. Stage, grade, size of tumor, type (ductal, lobular, inflammatory etc.) This information would help us TNBC sisters be more able to identify with your mother's situation.
Just know that you have found a place on this site to share, compare, vent, ask questions, or anything. We totally understand.

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 11:52am
Dear Mouse,
I am so happy you were able to visit your mother and be with her for her 1st infusion. It does make a difference when you can 'put a face' with what your mother is experiencing. Meeting the doctor and seeing how your mother is handling things has got to take a big stress off of you.
Best of luck to you and your mother.
Please keep us posted.

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
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To the daughters whose mothers were recently diagnosed,

I joined the forum this week because my mother has also been diagnosed with TNBC. We just found out Monday (2/13) when we got her pathology report after her surgery on 2/10. I have spent the week trying to educate myself.

I have gone through the range of emotions that the rest of you have mentioned. It is so scary, overwhelming, heartbreaking, confusing. . . and all of my life who has been the person I have always turned to first when I feel any of these things - my mom! It is an adjustment because we daughters now have to switch roles and be the source of strength for our mothers. Mom and I do cry some together, but I also cry alone. In the beginning, Mom was worrying about me because I was so upset! I quickly saw that I was going to have to "suck it up" because I don't want to add half a second's worth of worry to what she already has.

Here are my mom's details:
63 years old
TNBC
Stage 1
Tumor size - 1.4 cm
Grade 3
Sentinel Node biopsy - three nodes and all clear
Lumpectomy - clear margins, but one side only .5mm (This is a question I have for the oncologist - 1 to 2 mm is preferred from what I have read.)
BRCA - unknown at this time but I am sure she will be tested - no history of breast cancer in the family

We have an appointment with the oncologist and radiology oncologist 2/21. After reading on the forum and elsewhere, I feel certain she will have chemotherapy and radiation - to be honest, I would be more afraid at this point if she didn't have chemo. What I am trying to understand is which chemo medicines are most effective. It doesn't look like we have as straightforward of an answer as there is with other types. Maybe we can compare notes on this forum since we are starting this process with our moms at relatively the same time. Mom and I plan to get a second opinion, and my hope and prayer is that we can get it from Dr. George Sledge in Indianapolis - IU School of Medicine. From what I have read, he is a specialist in TNBC. By sharing information, maybe we can cover more ground than we could alone. From what I am reading, we share a common goal - making sure our mothers get the very best of care!

I will post a response after our appointment on Tuesday. If anyone wants to send me a private message, feel free.

You and your mothers have my very best wishes.
Nadine
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2012 at 10:03am
Hi Nadine,

Dr. Sledge would be a wonderful second opinion; he is on the Foundation Board here as well. I think he is fabulous, have switched my care to him and am seeing him myself tomorrow! Be warned though, he can be difficult to get in to see. If you are having a hard time getting an appointment, you might want to send Steve a private message and see if he can facilitate an appointment sooner- sometimes his contacts with people can work wonders!

Your mom is very lucky to have you helping with the research and the details! Best of luck to her.
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nadine22 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2012 at 12:38pm
Deb,

That is wonderful! I feel that we are very fortunate to have someone like Dr. Sledge in our area - I am in Southern Indiana. Is this your first appointment with him? I noticed you said you had switched your care to him so I wasn't sure if you had seen him already. How long have you been trying to get in to see him?

I would be very interested in knowing what his recommendations are. I realize everyone's situation can be a little different and treatment isn't a one-size-fits-all process. I am just very hopeful we will be able to at least get a second opinion from an expert in TNBC like Dr. Sledge.

I don't mean to impose or pry so please know I will not be offended if you would rather not discuss the particulars of your situation.

You have my very best wishes for your appointment tomorrow. Be safe in your travels.
Nadins
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2012 at 9:03pm
Hi Nadine,

You are by no means imposing or prying! I think most of us here have shared or stories many times over- the more who can benefit from the experiences of other, so much the better!

I originally was in a hurry to get treatment started since the tumor seemed to be growing quickly. When I was nearly through with chemo, the hospital where I was being treated suggested that I should have surgery elsewhere because of insurance conflicts. I was thrown into a sudden need for a second opinion/new surgeon now! Appointments with Dr. Sledge were over two months out, but I made the appointment anyway as an oncology second opinion. I ended up going to Michigan for surgery, but went ahead and kept the appointment with Dr. Sledge, whom I saw in November. I took my husband and a dear friend with me and we all were thoroughly impressed and absolutely loved him. He was incredibly thorough in covering a lot of information. I switched my care to him because I felt like his views were very much in line with mine as far as continuing care.

I don't know that the care I had initially would have been one iota different with Dr. Sledge, but I felt like his approach was geared specifically to the nature of TNBC and not a more generic breast cancer approach. I see him tomorrow as my first appointment after having finished radiation and as my physical to start in a clinical trial.

I think the standard treatment is typically some variation on the ACT scenario with some changes based on facility, patient age/health, etc. As Steve indicated, the BRCA status can affect recommendations also. I had chemo before surgery. This served to shrink the tumor so that I could have a lumpectomy, but also served to tell if the drugs were having the desired affect or not.

I would suggest having someone that can take really good notes or take a recorder so that you can review what was said.

Best of luck on Tuesday!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2012 at 11:58pm
Hi Nadine,

Sounds like you have been doing very good research for your Mom's appointment Tuesday.

More than likely you have some of the following things on your list for your Mom's appointment tomorrow.
Listed some questions in case that might be helpful for you.
You know best what questions your Mom and you need to ask.
        Additional information/plan regarding the one margin side one that was .5mm
        What are the pros and cons of each chemo plan suggested?
                  Names of drugs in each plan. How frequently drugs given.
                  How many cycles(times) drugs given.
                  Expected side effects of each chemo plan.
                  (MD may suggest only on chemo plan and not several plans to choose from)
        Is physician aware of any resources to pay for BRCA testing (if not covered by Mom's insurance)?
                 MD may be aware of resources specific to your area.
        If your Mother's vitamin D level is not known, will physician order the test.
                   (If low, physician can make plan to raise it with Vitamin D3)
        Best time to call physician if your Mom/you have questions after appointment.
        Who is the contact person in physician's office for community/resource information?

With caring and positive thoughts,

Grateful for today.......Judy



Edited by Grateful for today - Feb 20 2012 at 11:59pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 2:31am
Nadine,
 
In case it hasn't been mentioned in the resource section of this site are lists such as "questions to ask your dr" etc. all ready to print out and take with you. They were compiled a couple years ago so you may want to check them against some of the new suggestions. There are many other tips, what to take to chemo, what to expect of chemo etc.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 9:25pm
Hi Nadine,
You are doing a wonderful job supporting your mother and gathering information.

Question: Is your mother OK with all of this fact finding and is she joining in on learning about the disease.

I only say this because my SIL Faye was recently diagnosed with TNBC and her daughter hit the internet. The daughter deluged my SIL with a lot of facts that she was not ready to deal with. Sometimes you have to use discretion. You want to know, but is your mother ready to digest all this information?

When I was first diagnosed I had to take the information in 'bite sized pieces', especially in the beginning.

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2012 at 8:10am
Lillie,
That's a great point that I hadn't thought of.  I was exactly the same way.  I remember just handling the fact that triple negative required chemotherapy.  And then finding out that it had a higher recurrence rate.  That was quite enough for awhile!
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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