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Words of Wisdom???

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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=2940
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Topic: Words of Wisdom???
Posted By: daughter858
Subject: Words of Wisdom???
Date Posted: Feb 21 2009 at 6:19am
This is my first post on this site, so I hope I'm posting correctly.  My mom was diagnosed 2 weeks ago with triple positive metaplastic breast carcinoma.  As you all know triple negative is rare and treatment limited.  Along with the triple negative she also has metaplastic (not metastatic) carcinoma.  This is even more rare than the triple negative with only about 3% of breast cancers making up this group.  Even less is know about metaplastic breast cancer so they will be treating it as they would any other triple negative breast cancer.  I don't have a specific question, just looking for advice.  I know you are not doctors out here, but sometimes I think you patients know much much more than many of the doctors do.  Because my mother hasn't started any treatment yet.  I'm looking for any type of advise out here?  What things have your doctors done that were successful and what things were not so succesful?  If you could go back and start treatment over, would you have done anything differently knowing what you know now?  Any advise in what I should look for in an oncologist?  From what I'm reading being more aggressive up front with this type of cancer seems to give the best outcome, but the oncologists don't seem to be that aggressive that we have spoke with, and these oncologists are from some of the most reputiable cancer centers in America. They feel the "standard" approach should be taken.  Lumpectomy, chemo and then monitor.   I don't want to say that I know better than the doctors who are highly trained in this specialty, but we have one shot at this and there's no going back.  I guess I should mention that my mothers tumor is about 3cm, the MRI doesn't show any abnormal lymph nodes (however metaplastic breast cancer usually is node negative) and no metastasis.  Any imformation at all would be greatly appreciated.  God bless all of you out here and keep up your couragious fights.  You give me and my mother lots of hope.  Thank You.

-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??



Replies:
Posted By: Beth Anne
Date Posted: Feb 21 2009 at 7:27am
Dear Daughter,
I am so sorry to hear about your mom! There is hope and lots of different treatment options.

Although I am not familiar with you mothers exact type of cancer other then the TNBC but on thing I would want to know is the "standard of care" for TNBC or just BC???

I would also look at doing chemo before surgery so that she will know for sure that the chemo they are giving her does indeed kill the cancer. With TNBC not all chemo is equal. You say nothing about radiation... I don't know of too many women that have not gotten radiation with TNBC. Now I could be wrong... I am in Seattle and I was told that this was the standard of treatment with TNBC.

Given that her cancer is so rare I think it would not be such a bad thing to get another opinion.

Now I have my own opinion on a Lumpectomy that I would be happy to discuss with you over the phone if you would like to call me... I will PM you my phone number.

Nancy and Pam (Trip2) have tons of good information on the site about what to ask the doctors and more, and I am sure that they will be responding to you very soon! They are very good about getting to everyone. We are truly blessed to have them!Smile

Please take care of your self and I am sending cyber hug to both you and you mom  Hug.

Beth Anne


-------------
Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!


Posted By: CarynRose
Date Posted: Feb 21 2009 at 8:08am
Dear Daughter,
 
You are right that many docs would prefer to do standard treatment for TNBC.  I'm a perfect example of that type of treatment and I now have Stage IV cancer. 
 
And so, I would, IMHO, suggest being more rather than less aggressive.  If I had to do it all over again, I would have had a double mastectomy, full lymph dissection (NOT SNB), chemo, radiation, etc.   I've been told that if we'd gone that route, I probably would not have had the micromets recurrence that spread to my lungs.
 
The idea of neo-aduvant chemo isn't bad either.  Shrinking the tumor and finding out which chemos actually work are two advantages of such a technique.
 
Has your mom been tested for the BRCA mutation, or any other hereditary risk?  It's very important to know because a mutation can increase the risk of recurrence and/or a new primary.  It also can have an impact on you since if your mom is positive for a mutation, there is a 50% chance you are too.  You'd need to make proactive decisions for yourself.
 
All the best to you and your mom,
Caryn


-------------
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10


Posted By: Shelley
Date Posted: Feb 21 2009 at 6:17pm
Dear Daughter,
I have the same diagnosis as your mom and fall into the rare catagory.  I began this journey one year ago.  I had surgery, chemo, rads.  I am now cancer free and healing great.  I was a rough journey but I learned it is very doable.  The key is focusing on one step at a time.  I trusted my doctors and their expertise.  I did get a second opinion.  Good luck!


Posted By: Nancy
Date Posted: Feb 22 2009 at 7:36pm
Dear Daughter,
 
I am sorry that I have not replied to your post. First to welcome you and then to tell you that these women will hep both you and your mom. Since my daughter Lori was dx in June, 2007, I have gained knowledge from the posts of the women who have been dx TN. While I, as Beth has stated do not know very much about the metaplastic bc, I do know that with TN you have to be very agressive with the treatments/surgery.
 
We have a thread on the Welcome forum..."no chemo-surgery only" on page 2, which may enlighten you, and possibly help your mom with her decisions. This is her life, her body, and no matter what the doctors tell her, she has to do everything possible to make sure this beast does not return. There are no guarantees, no matter what anyone does, as it appears that the same chemo is given to BC+ as TN. As one doctor has stated..."they just throw everything at this and hope that something sticks". Many of the women who are 20 years out from dx had chemo every week for a year.
 
Ask every question that you can ask of the doctors. Get second and third opinions, research on this site, as there are many articles on the news forum which will be very helpful. Then read what these women have written who now have mets.
 
Caryn tells all the members what she wish she would have done. If there is any family history of cancer, of any type, then the BRCA testing is a must. But, as Caryn pointed out many months ago, family history trumps even the BRCA gene test. Meaning, that if it is negative, there are more mutations which they have not discovered. BRCA gene mutation is just one.
 
I have an email saved from CalGal from back in January, who just passed a few days ago, and in it she tells me of how she had asked...begged for certain tests. Certain tests were "lost", and then she found them.
 
Your mom and you have to be adamant as to what is best for her, and with information in hand...proof...even if you have to print out the posts from these women on what worked and didn't work for them, then that is what you have to do.
 
The chemo resistance testing for the tumor is what I feel could save many lives. Do they do that? I don't think so. Perhaps you/your mom could tell them that is what you want done.
 
Because you are researching...perhaps you do know more than the doctors. You want to trust the doctors. However, these oncologists are swamped with patients, and unless they are collaborating with other oncs from around the world, they are not up-to-date on the latest treatments.
 
What is your mother's age? You didn't mention that. Just knowing that she has you doing all this research must be so comforting. Lori could not even function for 5-6 weeks after being dx.
 
Well, please get back to us and if you need any information, just ask and it shall be given...that's a promise.Wink
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: sibu
Date Posted: Feb 23 2009 at 5:30pm
Dear daughter,

Hello and welcome!

I have no words of wisdom on your mom's particular case, so I hope you'll settle for words of encouragement, strength, love and my best wishes.

Much love and light to you and your mom,

Donna


-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: daughter858
Date Posted: Feb 23 2009 at 5:59pm
First I would like to thank all of you for your great advise and support and encouragement. 
 
I just wanted to put up an update on my mother.  We have met with another oncologist today.  Same story. 
 
First off they will not test my mother for BRCA mutation.  We were told there is not a stong enough family history and she is postmenopausal.  I don't understand this.  I think this is something she needs to know for sure, for herself and me and her sisters?
 
Secondly the oncologists will not give her radiation because she is electing a double masectomy.  They say it is not needed with a masectomy.  Do you agree with this?  Should I keep pushing the issue or is it not worth it.  I should note that my mothers tumor is grade 3 and was given a 9 on the proliferation scale.  It the past two weeks that we have been researching our options her tumor seems to have grown from 2.4 cm (on MRI) to 4.5cm (this is by the dr feeling it).  I feel that this is a pretty darn aggressive tumor and we need every weapon available to kill this thing.
 
So the treatment plan at this point looks like this.  She will be given AC + T x4 every three weeks.  She will have a bilateral masectomy.  If cancer free at this point we are done.  If there is residual she will be given radiation then, but no additional chemo.  How does this compare to your treatments?
 
We have one last appointment tomorrow.  Hoping she's a bit more aggressive.
 
Thanks Again
 
I'm sending you all warm wishes and lots of prayers.
 
 


-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??


Posted By: sibu
Date Posted: Feb 23 2009 at 6:25pm
Hi again,

Kudos to you for being so on top of things and being right there for and with your mother! Do you have any idea how many people simply go with whatever their doctors are telling them, no questions asked?

I'm sure several people will chime in on the radiation issue. You may want to go back through the archives and do a search on this. There was a good pro/con thread not too long ago that may be helpful.

A couple random points--each case is a little different as far as chemo first then surgery or vice versa. With tnbc, we really only get one chance for chemo (with other types of bc, there are several different chemo agents they can try; if one doesn't respond, they can move on to a different one). The good news is, we respond to chemo better than other bc. the bad news is that if we don't respond, the outcomes are not good at all.

I believe this is why they sometimes want to do chemo before surgery, because they feel they can see if it worked (debatable, but that's the argument).

So, their argument is that if your mom has a clean scan after chemo and a double mast., she wouldn't need radiation? They would only recommend it if the chemo didn't take? Hmmm, I would call them out on that one. Ask them how long it takes after chemo and surgery for cancer cells to start showing up on a scan if they are going to come back.

You may want to bring a radiation oncologist in on your decision making process regarding radiation. They should be able to tell you for your mom's specific case, how much they feel it will improve her chances. Based on this number, you can decide if it's worth it.

Much love your way,

Donna



-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: Suzanne
Date Posted: Feb 23 2009 at 7:24pm
Hi!  You might ask why the doctors are not proposing giving AC + T "dose dense", which means every two weeks, instead of every three.  Research seems to indicate that it might be better.  In fact, some women have the Taxol part every week.
 
Best wishes,
Suzanne


-------------
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07


Posted By: cduvall1
Date Posted: Feb 24 2009 at 4:36am

Dear Daughter 858,

 I too have been diagnosed with invasive metaplastic carcinoma.  There are subsets of metaplastic carcinoma; complete label for my cancer is invasive metaplastic carcinoma/matrix producing.  During this year of confusion, doubt, fear, hope, I have done much searching online for more information about this type of breast cancer.  Not much is know, and what I have found can be discouraging.  But there is hope too!  The standard treatment for TNBC has, at this point in time, the best chance for success.  In my case it was ACx4 dose dense (had to discontinue the dose dense after the first treatment) and T 12xweekly.  I have found more support for the 12 infusions of Taxol than for any other chemo drug.  Don't quote me though. 

 Right now I am not at my home so don't have access to the reports I have printed out over the past year.  I am in my last week of radiation at Big Horn Radiation at Eisenhower Hospital, and am 110 miles from my home in Blythe, CA.  I do want to tell you that a research report I found on an ocologists' site said that even though a woman has a double mastectomy, the radiation oncologist should consider radiation to the chest wall because TNBC does metastisize through the blood system and tends to go to the chest wall and lungs.  Again, I am not an expert and my memory is not good.  It would not hurt to bring this up with your mom's medical oncologist and with a radiation oncologist.  Doctors can be so obstinate and sometimes don't want to hear their patients bring up stuff they have not thought of themselves.  Push!! push for answers about radiation to the chest wall.
 
Finally, has your mother had a PET?  Insurance companies don't want to pay for it, but your mom's doctors can probably get it approved.  I am also curious about another diagnostic tool called Breast-Specific Gamma I.....??  Don't know last word of BSGI. 
 
Let me know how things are going.   Feel free to use private messenger if you want to respond to my comments, but let me reassure you, the gals on this site are eager for information and news about your mother so feel free to hit reply and let us know what's on your mind and in your heart.Smile


-------------
Carol
dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09


Posted By: Nancy
Date Posted: Feb 24 2009 at 2:55pm
Carol,
 
Here are links and the last word is...Imaging. And...a mammogram is only 40% accurate, so why are they still telling women to have mammos? Because it is cheaper. Mammos miss many of the tumors, and they have time to grow, and if it is TN...grows very quickly.
 
Oh yeah...one more thing...to get the PET..if you have to...you lie.... Tell the doctor whatever he/she needs to hear to order that test. Some idiot the insurance company pays to find ways to deny you tests or coverage for anything, and is sitting in a cubicle and decides whether or not you will live. Many pains can be imagined...but we will never know if we don't have the test. Wink
Nancy
 
http://www.reuters.com/article/pressRelease/idUS149044+29-May-2008+PRN20080529 - http://www.reuters.com/article/pressRelease/idUS149044+29-May-2008+PRN20080529
 
http://medgadget.com/archives/2008/12/breast_specific_gamma_imaging_bsgi_developments_1.html - http://medgadget.com/archives/2008/12/breast_specific_gamma_imaging_bsgi_developments_1.html
 
 
http://www.lvrj.com/blogs/health/BSGI.html - http://www.lvrj.com/blogs/health/BSGI.html
 
 
http://www.imagingeconomics.com/issues/articles/2008-10_15.asp - http://www.imagingeconomics.com/issues/articles/2008-10_15.asp
 
 
 
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: daughter858
Date Posted: Feb 24 2009 at 3:04pm
Thanks again for all the wonderful advice and support. 
 
 
Another update on my mom.  We went to see the 3rd and final oncologist today.  She was a very nice doctor and basically agreed  with what we have been told so far.  So here are our opsions.
 
Lumpectomy (with radiation) or masectomy (no radiation) then either TAC X6 (every 3 weeks) or AC x 4 + Taxol X dose dense (every two weeks).  Or we can do it visa versa, meaning surgery and then chemo.
 
We are pretty confident that we want to go with the chemo first - one decision made!
 
So that leaves us with deciding to go with TAC X 6 or the AC x 4 + T DD??  We need to decide this by friday, as we have her 1st chemo treatment scheduled for then.  What are your thoughts on this?  Standard or dose dense?
 
We also have to decide on the lumpectomy + rads or masectomy no rads, but we have time to think about this one.
 
I'm just glad to be getting her on meds soon.  She swears the tumor is growing!
 
Why does this have to be so difficult??!! 
 
ps  I don't know if you guys all know of the new vacinne trial geared for TNBC at University Hospitals in Cleveland, but since that's were we'll be going I asked about it.  We were told that it's still in the prelimary stages so it's not available ???Unhappy???
 
Sending good vibes and prayers your way.
 
 


-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??


Posted By: Nancy
Date Posted: Feb 24 2009 at 3:17pm
Daughter,
 
We have an article about the T being given for 12 weeks, and I will find that for you. I would imagine that the tumor is growing. I do wish they could do the chemo resistance test to see which chemo it will respond to. Have they told you that they will be doing some sort of testing after a few chemo treatments to see if it is working? That is a must!
 
I think that most will agree on dose dense, I know I would, after reading all that we know of TN. Will they be doing a bilateral mastectomy? I have articles for no rads after a bilateral, and then rads after a mastectomy...all sometimes very confusing, but I will look for them.
 
I will send you a private message with my email and send the articles. Lots of reading, but they may help with your decision.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: kirby
Date Posted: Feb 24 2009 at 5:00pm
If your mother is in good health dose dense has shown better results in not having a reccurance.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: cduvall1
Date Posted: Feb 25 2009 at 4:32am

Go with dose dense if your mother's body can tolerate it.  Her white blood cell count will most likely drop, so keep an eye on that.  Ask the oncologist about research on the success of Taxol x 12 (given weekly).  Also, has she had a PET scan?  With the grade and size of your mom's tumor, I'd think a PET would be useful too.  We would think our doctors would want to back up their decisions with documentation so we would feel more confident in their methods of choosing treatments.  Good luck to you and your mother.  You both will get through this!  Tell your mom that a hairless head doesn't feel too bad!  LOL  Hey! we try to keep a sense of humor throughout this whole process. 



-------------
Carol
dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09


Posted By: daughter858
Date Posted: Feb 25 2009 at 5:35am
Do you know where I can find information to back up the Taxol X 12 research?  I would like to print this out so that I can take it to her oncologist.  Thanks so much for the info.  With eveyones responses I think I've definately decided on the dose dense method. 
 
You guys are wonderful. Tongue


-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??


Posted By: cduvall1
Date Posted: Feb 25 2009 at 7:35am
Try this    http://www.breastcancer.org/treatment/chemotherapy/new_research/20090417c.jsp - www.breastcancer.org/treatment/chemotherapy/new_research/20090417c.jsp  
 
If that doesn't work, google Taxol 12 treatments.
 
Hope all goes well. Embarrassed


-------------
Carol
dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09


Posted By: Nancy
Date Posted: Feb 25 2009 at 7:59am
Carol,
 
Your link came up not found, as many of them do when they expire. I did what you suggested, and this is the same exact article we posted many months ago. You saved me from searching sweetie.
Thanks,
Nancy
 
http://www.breastcancer.org/treatment/chemotherapy/new_research/20080417c.jsp - http://www.breastcancer.org/treatment/chemotherapy/new_research/20080417c.jsp


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: daughter858
Date Posted: Feb 25 2009 at 8:17am
Thank you ladies.  This is great information and I will definately bring this up with my mother's oncologist.
 
SmilesTongue


-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??


Posted By: vickyann
Date Posted: Mar 06 2009 at 2:36pm

Dear Daughter,

I have two daughters, I know your mother would be touched by your concern.

What I would do diifferent?

I would go to the best...

I tried to get into MD Anderson in Houstion Texas, after chemo to find out the latest on triple negative. They would not see me at that point.

The no after care plan for us sucks. So of course you worry about recurrance. If you have a wonderful doctor, a good support team, and a understanding family then you are doing the best you can.
Your mother does not want you to worry about her. Enjoy and laugh with her, nothing is better for mom than that sweetheart.
vickyann
triple negative survivor


Posted By: shellieh51
Date Posted: Mar 06 2009 at 3:54pm
I believe that came out of San Antonio conference 12/2008.  I listened to a summary on lbbc.org and you should be able to download it as well.  I think the content of the conference is also posted some place on TNBC.

Best wishes to you and your mom - you are a great daughter and a real trooper.

Take care.


-------------
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -


Posted By: daughter858
Date Posted: Mar 09 2009 at 5:16am
Carol,
 
Thank you so much for posting.  As lonely as it is being a triple negative fighter it is even more lonely to be fighting metaplastic breast cancer.  So little is know and it makes it very frightning.  I too have been doing lots of research and too have found that following the TN treatment plan is our best bet. 
 
My mother is currently on chemotherapy.  She is receiving AC X4 dose dense followed by Taxol X 4 dose dense.  I am seriously considering talking with her onc about having the Taxol X 12 weekly.  I just don't know what the best choice is.  I have read articles that show that TNs seem to do a lot better with the X12, but these studies compared the weekly taxol to taxol every three weeks.  I would love to find a study that compares weekly taxol to the every two week dose dense taxol. 
 
I too am very concerned about her not receiving radiation with a masectomy.  Her onc told her she would only do it if something unusal was found at the time of surgery.  What really concerns me about her dx, as you know, is that lymph nodes do not always show up positive.  Therefore, I feel that all metaplastic breast carcinomas should be treated as lymph node postive and handled a bit more aggressively.  This includes radiation.  Hopefully we will have time to find a dr that will do this, if her dr continues to say no.  We actually have an appointment with the radiologist this week, so I am very anxious to find out what he has to say.
 
She did not receive a PET scan.  Her original dr (we have since changed) told her that she did not need one since she was having a complete body bone scan.  She also had an MRI of the breast and lymph nodes and CTs of the pelvis, abdomen and chest.  I do hope this was enough testing.
 
Thank you very much for posting.  I will be watching for your future posts just incase your dr maybe comes up with an idea that my mom's dr didn't.  I too will send you a message if my mom's dr comes up with anything on this end.
 
Sending lots of hugs and prayers!
 
 


-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??


Posted By: mainsailset
Date Posted: Mar 09 2009 at 6:41am
Dear Daughter: I'm on my way tomorrow for a meeting with my onc. I'm scheduled for a dbl masc in late April followed by radiation and no one on my team has ever, not once, suggested that I drop the radiation after surgery. I will bring this up again tomorrow but as you know TN don't have many options for treatment which makes radiation all the more important to keep in our toolbox.


Posted By: daughter858
Date Posted: Mar 14 2009 at 4:15pm
mainsail,
 
Would you mind if I asked what stage you were diagnosed with?  Any lymph node involvement?  My mom is considered stage lla with no lymph nodes, however her lymph nodes have not been biopsied and will not be biopsied until after chemo when she has her surgery.  This doesn't really bring me much comfort since being negative after surgery doesn't really mean she is negative now.  Also, I asked about the size of the tumor, since it was estimated at 4cm.  I was told that they only do radiation with a masectomy if it is 5cm.  Does one cm, especially when the size is estimated, really make that much of a difference?  Also the radiologist told me the size wouldn't matter anyhow because they will be basing treatment on the size of the tumor at surgery, not the original size, which makes no sense to me.  So if someone with a 5cm tumor has a masectomy and then chemo, they would get radiation, but if they choose to do chemo first, they wouldn't.  I'm sorry, I don't really expect you to answer my questions, I'm just venting a bit.  Why does protocol have to be followed so closely, especially when the protocol is based on the "standard" breast cancer? 


-------------
Amy

My Mother Laurie
DX 2-6-09 at age 55
Invasives Ductal Metaplastic Carcinoma (metaplastic part is very rare)
TNBC / grade 3
2.5cm - 4cm ??
BRCA??



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