Not a Typical Triple 3--Am I Alone Here?
Comments
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Raye,
FAC is from what I understand three different chemo drugs. The same as A/C but with the added drug that starts with an F. At least that is what I understood it being. Dont really know I will get all the details when I go for the treatment. I will see Onc. before I do the treatment. I was also pretty active when diagnosed. I thought I was what was considered (healthy 36 yr old woman)..Freinds joke and say dang girl when you get sick you (really) get sick....I am like yea tell me about it. What is an ooph? I did a double mastectomy right off the bat. I was offered lumpectomy, but I said oh NO....the left one failed me so the right one goes too. Then started chemo 3 weeks after surgery. Did you do radiation? I have to do that next....just trying to get through chemo first.
Kittycat,
I dont know about the pathology report not saying whether or not you were her2 + or not. Mine had three different sections which stated the er pr and her2. Mine is a little wierd because although the er was stated to be 0% the pr was 3%.....and her2 negative. Talked to Onc. about the 3 % Pr and she stated she considers anything under 10% to be negative. So I guess I am a bit wierd on that one......
Navy,
Good going on the exercising. I am truly gonna have to work on that one. I do manage to get on that treadmill at times. I know it is important to do so I need to just DO IT. I struggle with the eating thing right now because of chemo....I only have a taste for some things. I will be working on that too.
May God Bless Us All
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Yes, I know exactly what you mean - I was a very healthy person and BAM. People told me the very same, when you get sick, you really get sick! ha.
The F in the FAC is fluorouracil - I looked it up online.
Ooph is the removal of the ovaries - oophorectomy. Yes, I had radiation. Didn't want it, but wanted to do everything possible to get rid of the cells. I too, told me bs the next day (she wanted me to wait 24 hours before giving her my decision) I wanted a mastectomy, I knew that is what I wanted right away.
Yes, take it one step at a time. Chemo, rads.
Raye
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Raye,
Thanks for the reply. Yes it is very true. ONE STEP AT A TIME. I do not know if I will have a hysterectomy. At first my Onc. did mention it. Then I did the genetic test and it came back BRCA negative. She did say that could still be an option so I guess we will see after we get past all this other stuff.......Yea the radiation is kind of troublesome....You are right gotta do what we gonna do to KILL this stuff.....I just find it strange that we are all so different yet we have these tumors which seem to act in some ways so much alike. Someday soon I hope and pray they have an answer for this.
May God Bless Us All
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Robyn, I had a similar response to chemo. I could feel it shrink and then get bigger. My onc totally ignored it, but I spoke to the BS who said I should do an MRI which showed the tumor had gotten slightly bigger. I stopped chemo and had my surgery and...
Angels, I too was shocked when they told me my tumor was 5.3cm after surgery. It had come up as 3.8, 3.9 and 4.1 on the scans. This whole thing has been shocking really. lol
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I think that I'm a pretty typical triple negative. I was 46 at diagnosis and caucasion. I have no history of breast cancer or any cancer in my family. I did not get tested for BRCA because I have no family history. I have 2 children with the last born when I was 34 and breast fed briefly with the first one. My tumor hurt too.
Maybe we could think of more questions to ask of each other to dig a little deeper to find more of a common thread beside younger age.
Lorrie
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I know of several white women over 50 who have triple negative - I being one of them. I was 54 at diagnosis.
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I was diagnosed June of this year. I am caucasion, 40 years old. Two kids, breast fed and am BRCA negative.
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I had a lumpectomy May, 2009 after discovering I had a fluid filled cyst that was drained showed that there was also another cyst which was solid. Could not get clear margins, had unilateral masc. with diep flap reconstruction. I am triple negative, and cannot do the A part of TAC, undetected heart issue I never had before the surgery. Have completed 4 out of 6 treatments of TC and will be heading for radiation afterwards. I am 56 years old and working full time through my treatment. I did not know much about being triple negative and am still puzzled about the future. I hope that there will be some breakthrough for the triple negative club in the near future. I am still looking forward to having some good years with my family.
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There are a couple of things to consider. Maybe there is another gene doctors are not yet aware of...that causes triple negative breast cancer. I am Triple negative and I am as white as a ghost. I do have the BRAC 1 mutation on the exon 13 line.
You may also want to have your tumor slides tested again for the triple negative status. They did that with my sister who also was dx with TN and her tests came back differently the second time around.
There are so many mysteries with breast cancer. They have discovered a lot, but they have a ways to go yet. Good luck!
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I was Dx at age 45 in Dec. 2008, caucasian, 2 children that I gave birth to at age 19 & 22. Breast fed both. No hx of BC in the family.
I think my TNBC came from stress and radiation exposure. I had lots of x-rays as a teenager because I have scoliosis
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Hi Ladies, I'm new to the discussion board...I'm an 39 African American with 2 kids( 23 and 6)..single mother...never breast feed...BRCA 1&2 negative...familiy history-aunt and cousin on fathers side 8 years ago...they had no recurrances.......Doctors say TRIPLE NEG. Cancer scares them- it scares me that they say that. I'm not sure how I go this but its controlling my life daily. I try to be positive but its hard...I had first Chemo treatment on 9/24...going for 2nd does thursday....very scared ...side effects are horrible....also wonder daily if this thing will come back... Does anyone know the stats on recurrances of Triple Neg.? I was told it was high
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Just keep your spirits up. I had a very large tumour removed by mastectomy in 2006, after six months of chemotherapy and then post-surgery three weeks of radiotherapy. I am still alive to tell the tale, after four years, three months and sixteen days!
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Thanks Sylviaexmouthuk! I needed to hear something positive from a triple negative sister! Congratulations!!!
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@ Dershell- I am 38 and an african american mom of 4. I was diagnosed Nov. 1 of 2007. I don't have any family with breast cancer and BRCA neg. Chemo actually went well for me. I was very lucky. However, I kept myself in my routine of work and family and I think that helped A LOT. Take it one day at a time and try not to let it become you. You are stronger than this. We all are, but if you let it, it can dominate your life and you don't want that. As for the reoccurence, yes it is high, however, it also responds well to chemo. I think that anyone who has been diagnosed will always live with the fear of the future. I guess the best advice is to deal with the present. Get through one round at a time. I am coming to 2 years since my surgery, and in the process of having my breast reconstructed. I do find myself noticing things more. I have been watching the trees all week looking for the colors of fall. I do appreciate it more. Welcome to a sisterhood that noone wants to be a part of, but blessed to have the spirit and companionship once you are here.
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I am not a typical TNBC. My "2 x 4" showed up in my breast out of nowhere...not only did I get yearly mammos, but I had had a clinical breast exam at my obgyn about just two months before I was diagnosed ! I am caucasion, 44, Irish and scottish, three kids, breast fed the second and third, only was on the pill for a little while in my twenties. All of a sudden I have this terrible 4 cm cancer in my breast and a 3cm lymph node postitive for cancer. I got a pet scan negative for anywhere else and my BRAC test came back negative. I only had one aunt on my dads side with BC 20 years ago when she was 60. There is an uncle on my moms side with colon cancer. i wonder could it be enviornmental? Was it just lingering in there and then just pop out? Or did I just get exposed to something recently? These questions haunt me at night. Thank God my husband found it when he did. And yes, it was painful and yes, I was told breast cancer isn't painful. But I persisted with quick appointments and tests so everything moved really quick. I have already started chemo every other week and am bracing for the hair loss. I refuse to dwell on statistics, they scared and depressed me at first and I truly believe that continuing a good diet and exercising will help keep this away forever when I am done with all of my treatment. I feel for all of you so much and what you are going through with me. Here I don't feel so alone. Good luck and God Bless.
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Not sure if there is a typical TN then..is there.?.I am Caucasion, diagnosed at age 49, had both kids before 30...had first period at age 11 or 12...did not breast feed..was on the pill several years,..then depoprevara for a couple of years..not very long really...don't know if I'm BRAC because no breast cancer in first degree relatives..my paternal grandmother had it...she had 2 daughters..no breast cancer with them...their daughte's or grandaughters do not have it..I'm the ONLY one..! !!! the only thing I can think of is that at some time we were exposed to something...but no one knows what that is!!!.
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How much Vitamin D has been recommended for you?
Blessings,
K
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K,
I take 1000 IU of vitamin D a day. I also take a multivitamin and calcium pills. I do struggle with my diet. I know I should be proactive to try to prevent a reoccurence, but I am such a grazer. I would love help with that.
Angie
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Hi Angie,
I post daily on the TNBC site, and have posted many articles about the benefits of vitamin D3. It is my daughter who was dx with TNBC in June of 2007. I do not know if I am permitted to post these same articles here, but I would invite you to go to our site and view them, and I do not believe you have to join to access the articles.
ps...we would love to have you join our site also
We have had many many discussions as to D3, and some members are taking 8000 IU's a day and even more. One member took 8000 IU's all through her radiation treatments and her onc was amazed at how well she did. No burning, no fatigue...nothing.
However, to get the full benefit of calcium, (have your body absorb the calcium), you must take the D3, and to have your body absorb the D3 you must take the Magnesium. D3 is really a hormone and one that everyone needs. My daughter Lori also takes Selenium and many more supplements/vitamins. She has eliminated all processed foods from her diet, all sugars...glucose, and eats only organic veggies and fruits, grass fed beef, free range poultry, no white flour, and uses Spelt flour to bake her bread. Her D levels are 82.6,which is where they should be for a person dx with cancer. Have you had your D levels checked? That is also very important.
Lori runs, hikes or bikes daily and works out at a gym 3 times a week, and this has been her routine for almost 27 years. So when she was dx, she asked not "why me", but "how me"?
I loved your term..grazer
Aren't we all?Hugs,
Nancy
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Hi Nancy,
I have been on the TNBC site only a few times. I can't remember if I joined, when I first found it, I was a little nervous to do a thorough look.
My D levels were fine, but I was anemic. She said that we would keep an eye on it. I don't think much of it because both my mom and I have had that problem off and on for years. It doesn't help that I'm not eating a balanced diet. I will have to look into taking more vitamin D.
Your daughter sounds like a great role model. I actually followed that same eating until I was diagnosed. I ate well through chemo, but now, I keep telling myself that I'll eat better tomorrow. I know I should be eating to stay healthy, but I just eat on the run. Horrible. Just maybe your daughter can inspire me
Ironically, when I was dx'd, I didn't ask why me, I asked why now. It was Nov. 1. We have 4 kids and the holidays to shop for. LOL The stress of parenthood;)
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I am new to the board and this is my first post also. I too do not fit the mold. Diagnosed at 37, stage 2B with both ILC and IDC both triple neg. with 2 positive nodes. I am white, BRCA 1& 2 Neg have one Aunt on fathers side that had BC in the 70's. Seemed to pop up out of nowhere!
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Welcome RWW. Sorry you have to be in this club but glad you found this site. Did you start treatment yet?
Navy
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That TNBC is for "young afro american" is a myth. You can see that from the stats of the posters in this thread. The real statistic is that once a gal gets BC, it is 40% likely to be TNBC for an afro american women whereas it is 10% likely to be TNBC for others.
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Have you been BRCA tested? If not, get that done please.
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Sylviaexmoutuk:
You asked about ER-/PR-. Her2- and triple negative. You have to have all three to be triple negative, but it is possible to be ER-, PR- and Her2+. Her2+ is also aggressive, but can be treated with Herceptin. Researchers say that there may be four different BC classifications--Luminal A and B, Her2, and Basal. They say most TNBC cancers are basal. By looking at cancer this way--according to its molecular composition--they think they might be able to find better treatments, especially of TNBC. Check the types out here:http://hormonenegative.blogspot.com/2009/02/new-breast-cancer-classifications.html
Researchers have been spending more time studying TNBC lately--yes, it's about time--and new treatments are being studied. So there has been some progress, but it has been slow. Diet and exercise help--go for low-fat, at least five servings a day of veggies and fruit, and regular exercise.
Pat
hormonenegative.blogspot.com
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I am also one of those square pegs that doesn't fit into a round hole. I was 58 years old at time of diagnosis. I'm as white as snow with absolutely no family history of breast cancer on either side. I had a mammogram in May that came back as fine and found the lump myself in October. My lump was also hard and sore to the touch. When they did the ultrasound, the lump was described as being 3 cm. in size but when the surgery was performed (about a week later), the lump was 1.5 cm. If there's one thing I've noticed about triple negative breast cancer and breast cancer in general for that matter is that there is no real normal. Every single case seems to be different so it becomes very difficult to pinpoint the cause. Because of that and other factors, I've done a complete 180 when it comes to all aspects of my lifestyle. I found a wonderful naturopathic doctor who's been fantastic in helping me make this journey. I noticed a few postings about Vitamin D3. It is one of the supplements that I take. Shortly after diagnosis, when I had the Vitamin D level in my blood checked, it was only 37. Now, less than a year later with a hugely different diet, lifestyle and supplements as well, my level is now at 111 at last count. It would be interesting to learn how many women with breast cancer have very low Vitamin D levels at time of diagnosis.
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43 @ DX... 2 children, never breast fed, caucasion.......
BC does not discriminate.....
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thaxs NavyMom! yes I completed treatment in Feb 08'. I was diagnosed 9/07 did 4 rounds of AC and 4 rounds of Taxotere. Had double mastectomy in April 08 and no radiation. Drs had me on Tamoxifen when I had went to another Dr for my hormones and thyroid and discovered my estrogen was 3 times the amount it should have been....so I questioned why it would be so high when I was on Tamoxifen....it got the Drs looking and a new Dr took over, went thru my files again and took them before a panel of Dr's and discovered I was Triple Neg and the first Dr had "missed" it! So here I was on Tamoxifen for 10 months and did not need it! How it was missed is beyond me, but looking thru my reports there it was clear as day! Its very important we educate ourselves of our pathology reports because had I been "aware" of what to look for on my reports I could have questioned this move alot sooner......at the time you are so concerned with getting thru treatment and the shock of it all, that the numbers and mumbo jumbo on your reports dont make much sense til much later when you've been "schooled" on breast cancer. Love my new Dr and grateful he caught the mistake
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Is there anyone in the forum that was diagnosed with TN BC and hyperparathyroidism at the same time or diagnosed with hyperparathyroidism before or after developing TN BC? I had the two diagnosed at the same time and think that there is an interconnection. Research shows this in quite a few cases. The diagnosis is usually made through a blood test looking for elevated calcium and elevated parathyroid hormone. I would like to hear from you if you fit this description.
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I just wanted to let anyone concerned know that I had the full surgery to remove one of my parathyroid glands and the adenoma on it on Wednesday November 11th. I was able to leave the hospital the next day and am now recovering at home. The high calcium level became normal immediately and now appears to have stabilised in the middle of the normal range. I have had very little discomfort following the surgery. My voice is completely normal and I am just very tired from the anaesthetic. My consultant told me the other three glands looked normal and that they must now be kicking in. I have a small 2 inch incision mark on the neck. I have a follow up consultation with the consultant in three weeks. I am hoping to find out what my parathyroid level is now, because all the tests have been about calcium levels. She did tell me that the adenoma was big and that she thought I had had it for some time and before the breast cancer. I am consequently still convinced that there is a connection between hyperparathyroidism and the development of breast cancer. I tend to think that the hyperparathyroidism has caused the breast cancer, with the connection being calcium deposits. I shall now concentrate on trying to cure my osteoporosis.
I hope that this message will reassure everyone thinking about having a parathyroidectomy. I look forward to any comments you might have and am still hoping to hear from anyone who has triple negative breast cancer and hyperparathyroidism.
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