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kag22 
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Joined: Mar 07 2009 Location: United States Status: Offline Points: 4 |
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 Topic: New memberPosted: Mar 07 2009 at 11:54am |
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Hi All-
I took my younger sister in for a breast MRI two weeks ago and while at the hospital the MRI technician convinced my insurance company to allow me to have an MRI -- I had a clean mammogram in September and clean breast check in October 2008.
Sister had a biopsy and was diagnosed with DCIS/LCIS and will have a bilateral mastectomy in March. She has not yet seen an oncologist (going Wednesday). My sister is not a triple negative.
Doctor called the same night I had MRI advised I needed to return the following day for biopsy on both breasts.
Biopsy results on right breast IDC grade 3, triple negative. Unable to biopsy left breast - too close to chest wall. I will have a bilateral mastectomy in early April with 8 treatments of chemotherapy.
Our mom died of breast cancer in early 40's. Doctors are very positive with both of us that we are in early stage, hoping they are right. Doctors also agreed we should be treated separately so as not to influence and/or compromise each other's treatment.
Have not told sister yet -- she is 10 years younger and I have always taken care of her... In addition, Mom and Sister were diagnosed same week 25 years ago..Mom had breast cancer, sister had non-lymphoma Hodgkins. Dr. thinks sister's breast cancer may be result of radiation used 25 years ago.
I've read a great deal about triple negative; sounds scary but I'm very positive and hopeful that this is very early. I keep debating whether to see a plastic surgeon or not. I feel like I need to get through the chemo before I take on any additional problems. I'm kind of overloaded with all this information; feel like one less decision/burden right now would make life a tad easier. Thoughts?
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trip2
Senior Member 
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Mar 07 2009 at 1:28pm |
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Kag 22
I am so sorry to hear you've been diagnosed with tnbc but you've found a fantastic place to be for support, information and whatever else you might need the best we can.
What an experience for you and your sister to both be diagnosed at the same time and now are both facing mastectomies.
What type of chemotherapy will you be using may I ask?
I would really like to suggest with your family history to seek genetic counseling and see if you will qualify for one of the brca 1/2 genes.
http://www.facingourrisk.org is an excellent place to begin.
Of course you are in overload not to mention you have factors going on with your sister's diagnosis. So this would be her second diagnosis? Also I would like to say how sorry I am that you lost your mother at such a young age.
Alot of what you read online will be unsettling but please keep in mind that mostly because of this Foundation we now have some heavy hitters working hard for us to bring attention to our need for targeted treatments and a cure.
Just in the last 3 or 4 yrs has there been much of any talk for tnbc but we are a "hot" topic now so I read in studies and research and again that is a good sign, a cause for hope.
This Foundation was kind enough to provide this forum for us so that we could come together and be with others who understand exactly what we are going thru and our arms are open wide so please feel free to ask anything on your mind and we will try to help.
While doing your research on plastic surgery keep in mind that this is something you can put off until you are finished with treatments. These decisions can all be made thru your surgeon and I think seeing a plastic surgeon for an opinion might give you that added info as to what would be available and when it would be best done.
Immediately after diagnosis we are faced with many decisions and so try to ease up and take it a step at a time or hour at a time if you have to and don't look too far down the road.
Once you have gathered up what you need to know and feel armed and ready to make your decisions with your doctors that you will feel more like an advocate working for yourself and you want that. You don't want them just telling you what you need to do. You are hiring them to get rid of this monster so they work for you.
I can understand your hesitatation to tell your sister and am sure this will happen when you are ready.
I have been diagnosed twice. The first time I had treatments in 03.
The second time was Feb. of 07 and my 39 yr old daughter had also been diagnosed the month before. It was quite devastating to deal with so much, having one of your children hit but this plus her, myself and my youngest daughter also did the genetic testing and my daughters are positive for my mutation. So this information needs to be known.
Now my sister has been diagnosed with CML, a type of Leukemia. My family is nearly gone because of this awful disease. My mother also died at 46 from ovarian cancer.
I hope those who have been thru the reconstruction will pop up and give you their opinions to help you with your decision.
My daughter did have one mastectomy when diagnosed then had the other breast removed and did her reconstruction. Others get going.
If you feel like you are not ready then you have pretty much made up your mind and you really do have alot to think about and do at this point.
Best wishes and stay with us,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 07 2009 at 2:39pm |
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Kaq22,
How fortunate that you had the MRI, as it seems that many bc's are not being dx with the mammograms. There is a new machine now for dx bc, The BSGI, and I had posted an article on that in the news forum. May I ask why... as you said.."Doctors also agreed we should be treated separately so as not to influence and/or compromise each other's treatment", and exactly what they meant by that?
You may want to make an appointment with a plastic surgeon just for a consult to see what he/she may recommend. There is so much information, and I would assume that right now you are in a fog. My daughter Lori remembers very little of the first 5-6 weeks after beiing dx.
If you have a family member or friend who could go with you for both your and your sisters appointments, I know that would help. They could take notes, or in some cases, many have taken a recording device with them to all appointments. Most doctors do not mind, and then you could refer to that when you have a question.
This is going to be a very difficult time for both you and your sister, and even more so for you, since you have always been takng care of her. I am sure you will find the right time to tell her. Do you have any other family members/friends, who will be willing to help you once you begin treatments?
I am assuming that due to you mothers dx and that she died at such a young age, that is the reason for your sister to have the bi-lateral. DCIS/LCIS is considered Stage 0. I know that would be my decision. May I ask your age and your sister's age? My daughter Lori will be 47 next month, and she was dx June, 2007.
Please know that we will be here for you any time you post. I am going to send you a private message with my email address so that I can give you information on how to access the many resources on the site.
Many hugs,
Nancy
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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 |
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kag22
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Joined: Mar 07 2009 Location: United States Status: Offline Points: 4 |
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Posted: Mar 07 2009 at 5:01pm |
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Thank you both... I must admit, I was less anxious prior to finding this website. Sometimes too much information is worse than none.
My sister is 40 and I am 49. My sister had non-lymphoma Hodkins in 1983 and then was dx w/thyroid cancer 5 years ago (thyroid removed no radiation or chemo necessary) My sister is going for genetic testing next week. I do not know what type of chemo I will receive - the oncologist said they would provide that information prior to treatment. My sister is seeing an oncologist next week. Dr's advised we needed invidivualized attention and treatment due to family history and different dx.
The word used to describe my cancer was "garden variety, most common" I was confident that my dx was very early and that chemo was almost as a precaution. I am not having a bone or cat scan. Should I be more concerned?? --- I'm feeling like perhaps I was naive worrying about breast reconstruction when it sounds like this will be battle of the fittest? Triple negative was explained to me has having a few less treatment alternatives -- am I being overly optimistic?
Yes, we have a wonderful support group of family, friends, co-workers, etc. My husband is the absolute best - I am blessed. Edited by kag22 - Mar 07 2009 at 5:04pm |
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Nancy
Senior Member
Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 07 2009 at 5:31pm |
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Kag22,
Well that is the first time I have heard TNBC being described as "garden variety, most common"? Considering that only 10% to 15% of women are dx with TNBC, and so very little is known about it other than is does respond well to chemo. This is not your "grandmother's bc".
It is termed as a very aggressive bc, and that is why almost everyone has chemo,and rads. Chemo is not a precaution, it is very necessary, considering you said there was a tumor close to the chest wall?
You should be requestiing a bone scan, as that can then be a baseline for future scans after a year. If you have Adriamycin, then you need to request a MUGA, as that is very hard on the heart.Usually they do many scans/tests.
Lori had every test/scan that there is. Sounds like an overkill, but her husband insisted, and Lori was glad that she had them, as then they showed there was not cancer anywhere else. Lori had a scare about 5 weeks ago, and had she not had a bone scan when dx, they would not have had a baseline for comparrison. Nothing there in 2007, and now degenerative arthritis. At age 47 in April. Lori even had a brain scan in 2007.
Oh now I understand as to the treatment. Of course, as your sister has a copletely different dx than you.
Breast cancer positive has meds that you can take once you are finished with chemo. Tamoxifen and Herceptin. Triple negative does not, as your cancer is not fueled/fed by hormones. It is good to be HER2-, as the HER2+ is more aggressive.
Kag, you want all the information you can get, as you will need to make decisions based on what you know. Knowledge is power. The less you know the less informed decision you will make. As we say...this is your body, your life, and you must be in control. You must be your own advocate...or if your husband has all the info then he can advocate for you.
Just keep asking questions here, and if you or your husband has the time, you may want to look over the articles in the TNBC News, Resources & Tips forum. There are over 40 pages now, and more every day.
This is not a journey you have chosen, but with the great support that you already have, and this site to come to, I know you will get through this. These women have been there..done that, and are the experts. Your doctor will not even be able to tell you what to expect...but these women will
 Hugs,
Nancy
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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 |
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cduvall1
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Joined: Jun 04 2008 Location: Blythe, CA Status: Offline Points: 148 |
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Posted: Mar 08 2009 at 8:59am |
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Kag22, Welcome I too was blessed by the prayers and support from family, friends, co-workers, and folks I really didn't even know. Take care and don't hesitate to return often to this site. At times you may cry, but at other times you will read the most heartening stories. Keep up your good positive attitude for it will carry you through.
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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 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Mar 08 2009 at 9:34am |
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Oh my gosh, garden variety?
 Most common?
Yes yes you should be concerned. You need a Cat and a Bone scan and go from there before you begin your treatments.
Chemotherapy is a must, it is the best we have. Please research when you can in this website and anywhere else you can find information.
We try to keep our resource section up to date best we can.
I'm concerned you may need a second opinion. Have you considered this? Whomever is telling you "garden variety" needs to do some research themselves, yike!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Mar 08 2009 at 3:55pm |
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I too was told how lucky I was that I had most common. However, I do believe that was in refrence to invasive ductal carcinoma, as opposed to lobular or inflammatory. In that regard, we may be lucky.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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I'm surprised you have not been innundated with replies from our readers regarding your doctor's statement, "garden variety, most common." Those of us who have been coping with our tnbc diagnosis do not find it to be most common. Yes, I too was amazed and overwhelmed and fearful after access our TNBC Foundation website, but it is and will continue to be one of the best sources of information for me. Knowledge is power! Because of the nature of tn, I'm amazed that your onc has not ordered a PET. The MUGA test is also important if you are having adriamycin. A bone density pre and post chemo is also useful for chemo patients. |
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