Not a Typical Triple 3--Am I Alone Here?

mitymuffin

Sylvia, Maybe there really isn't a "normal"?

I was 59 at diagnosis, and thought I was so healthy. 

mrsnjband

I was triple neg & ibc.  I was healthy, a little overweight & white. I was 53 at age of dx, I'm now 56.  NJ

LRM216

I think that Mitymuffin hit it on the head - I don't think there is really any "normal" pattern with triple neg.  We seem to be, on this forum and others I am on, all over the page in regard to our age, genetics, color, etc.  I have no cancer on either side of my family at all, had mammos since age 40 (diagnosed at 62, and just turned 64) with not even 1 call back and skipped 2008 mammo due to my daughter being in the hospital and decided - oh, I'll be fine and just do it in February, 2009.  Voila - guess what they found!  Seems to be no rhyme or reason to the path this disease follows either.  Just doesn't follow any rules.  I wish us all continued success with this beast.

sylviaexmouthuk

Hello Everyone

I do agree that it is hard to put us triple negatives into these boxes of age, race and colour. We just do not have the statistics. It would be useful if we could have yearly printouts of the number of women diagnosed with breast cancer in each country, the divisions they fall into, especially hormonal and triple negatives, and divisions by age etc. However, I do get the feeling that the number of women under fifty being diagnosed with triple negative is probably greater than those who are post menopausal or over fifty. I also think that a lot of women who are over fifty are now much younger in their physical body than previous generations, and that might be a factor in older women getting triple negative.

Breast cancer, and cancer in general, appears to move in mysterious ways, and none of us really knows which path we are going to go down.

Best wishes to all.

lintrollerderby

Hi to you all. I realize that this is an older thread. I just joined the site yesterday, but I was diagnosed last year. I searched the forums for a discussion on this topic, so I was glad to see that others had the same questions that I have also wondered about.

I was diagnosed at age 34. No family history of breast or ovarian cancer. I'm white, but half-Hispanic. Actually, half Irish and half Mexican to be exact. I've had one child, but did not breast feed. I have a history of breast cysts and had my first mammogram at 29. My tumor DID hurt. I was told the same thing by my doctor that many other women with TNBC were--that cancer doesn't hurt. It's high time we educate the medical professionals that what they are telling women is an old myth.

I wish you all luck in your journeys. I wish we didn't have to be here, but I look forward to getting to know you wonderful women.

Betty

sylviaexmouthuk

Hello LintRollerDerby (Betty)

I was looking at the active topics today and was surprised to find that this thread started by CudaShuda in 2009 had suddenly appeared near the top. I used to post in the past and then it went dead.

I was sorry to hear that you were diagnosed with TNBC at such a young age in May 2011. I was even more astonished to read that you had your first mammogram at age 29. That is so young. Was there any particular reason?

I think that with TNBC some people do say that there tumour hurt, so I do not think we can say categorically that cancer does not hurt. We women all know what we feel.

Am I correct in assuming that you have completed all your treatment? If you want to view or post I started a thread 18 months ago Calling all TNBCs in the UK. You are welcome to come and join us. There are several American women that I have supported throughout their cancer journey. They are really great women.

Best wishes, Betty.
Sylvia

lintrollerderby

Hi Sylvia,

Thank you so much for the nice welcome. I am very sorry that you have to be here and I wish that it weren't under these circumstances that we could interact.

Yes, 29 is awfully young for a mammogram. I have no family history of breast or ovarian cancer. Just a couple of days before Christmas 2005, I found a lump in the 2:00 position of my left breast. I immediately went to my primary care physician who thought it was likely a cyst, but took breast cancer seriously; so, he referred me to a radiologist (much to my delight for peace of mind) for a mammogram and ultrasound. It was deemed that the lump was a cyst and I was told to return at 40 years old so I cold begin my regular annual screenings. I found another lump in April 2010 at age 33 and had another mammogram and ultrasound. This one also showed a cyst, but at that time, my breasts had many. I found a lump by accident at the very end of March 2011 and went the next day to my primary care physician to have it looked at. She said it was likely another cyst, but sent me to have a STAT mammogram and ultrasound the next morning. The radiologist told me it was "probably benign" and that I should return in 6 months for a follow-up. I knew I wanted it removed and pushed the surgeon for a few weeks to perform an excisional biopsy. He told us afterward that it was "completely fine" and "consistent with a fibroadenoma", so we were completely taken by surprise on May 11th when we returned to the surgeon for the official pathology report and a post-op inspection of the incision. The surgeon had never heard of Triple Negative. After the initial shock wore off, I decided to seek treatment at Moffitt Cancer Center in Tampa, Florida. I am so glad I did, even if my outcome would've been the same. The level of care was so much better.

Yes, I've completed my treatment. I had a re-excision of the margins (which came out clean), a sentinal node biopsy of 3 nodes (all of those were negative for metastasis), and I did 4 rounds of Taxotere and Cytoxan. I have not had radiation and I'm not sure if I will. I had such awful problems with chemo and I'm still battling those side effects, that I was too scared to jump into radiation. I found another lump the week before Christmas 2011 and I thought I was about to go through it all over again. I had a mammogram and ultrasound at Moffitt and they said it was a cyst. I have another mammogram tomorrow morning.

I apologize for such a long post. Thank you for welcoming me to the UK thread. I will come over and join.

It looks from your signature line that you've been free from a recurrance since diagnosis. Am I correct? I surely hope so.

Warm Regards,

Betty

sylviaexmouthuk

Hello LintRollerDerby

Just a few lines to say that I was interested in all your details. You certainly have been through a lot. I do feel concerned about all your mammograms because of all the radiation. I hope you will have good news with your mammogram today and that you will be able to give them a rest. In the US you do seem to be subjected to mammograms at an early age, even at forty. Here in the UK you do not have screening until age fifty unless there are special circumstances. That screening ends at seventy, again unless there are special circumstances.

I was sorry to hear that chemotherapy was such a bad experience for you. I can understand your reluctance to have radiotherapy, radiation again! It is given in the UK to mop up any stray cancer cells. It is not as difficult and tiring as chemotherapy, but of course none of us knows the long term effects of radiotherapy. It is ironic that the standard treatment used for cancer treatment, is in itself a cause of cancer!

This thread started by IcudaShuda back in 2009 was really meant for older women to post in about how they did not fit into the general framework for those being diagnosed with triple negative breast cancer. We are told that it affects younger women more than older women. From my experience on some of these threads I do get the impression that on the whole younger women seem to be more affected. I remember when I was diagnosed in June 2005 I read that at 62 I was unusual in being diagnosed with TNBC. However, there are plenty of older women on these threads that were TNBC.

I am glad that you have found a centre where you are getting better treatment.

It will be seven years on June 20th this year since I was diagnosed. I have been in the clear all this time.

Wishing you all the best and hoping to see you on the Calling all triple negative breast cancer patients in the UK. I tend to concentrate on this thread as I created it for a special reason, but anyone is welcome to post if they are looking for support, information and companionship.

Best wishes
Sylvia

Lizardbeth68

I was 42 and about 30 pounds overweight when diagnosed. Absolutely no family history of BC and BRCA negative.  I was due for a well woman visit soon but hurried it along when I felt a pulsing pain in my breast one evening.

sylviaexmouthuk

Hello everyone,

 I was just posting to say that it is a pity that this interesting thread does not remain active. It is important to know how many older women are gettting TNBC, a cancer said to affect mainly younger women.

It is about time we knew what is causing this breast cancer.

Best Wishes, Sylvia.

Stupidboob

ICudaShuda I too am white, diagnosed at 44 and BRCA negative and have no kids.  My mother had lung cancer and her sister had breast cancer.  They told me that the BRCA is only 90% correct, because there is just to much they don't know.   Sorry you have been affected with this.......:(   Mine was very PAINFUL

Stupidboob

Sylvia...............I agree with you..............I did not realize that this was an older post.........just thought it was important to jump on and we DO need to find a reason behind it

sylviaexmouthuk

Hello Stupidboob,

I was glad to find that someone had posted on this thread that was started in 2009 by ICudaShuda and has some interesting posts. I do wonder what happened to her.

The trouble with the threads is that women suddenly disappear and you do wonder whether something has happened to them.

We keep being told that TNBC affects mainly younger women, and Afro-American women and Hispanics more than white women, but it would appear from the TNBC forum that there are lots of white women with TNBC and that they are of all ages. We have to know why women are getting these TNBC receptors. I tend to believe that most of the time it is not genetic. I tend to believe it is something in our way of life.

I was sorry to hear about your mum and her sister.

How are you doing?

Best wishes

Sylvia

anamerty

This is my second run in with breast cancer I had the first Jan 99 it was er and pr positive (they didn't do her2) had lumpectomy and rads and it never returned second time aug3 this year triple neg ! Different breast and classed as new cancer , go figure! First dx 43 second 56 I am white but have the brca1 as do most of my family I am the 2nd in the family to get breast cancer my sister passed from it then I got my first 5 years later then my other sister got it about 6 yrs ago them me again but my 2 sisters had er pr pos one thing I had noticed though that other posters have said nothing showed in mammo with the triple neg and that was also the case with me mammography was clear but same day exam Dr felt the lump and a week later cancer triple neg

Stupidboob

Sylvia thank you..............:)
I do agree with you, that we don't know what happened to these women.  I think the threads are way to confusing.  I wish they would fix that.    Yes, I think they are going to find it might be our enviroment, type of work we did or something like that....maybe even the whole thyroid issue.   I also wonder if weight really does play a role but that is such a sensitive subject with most women that it would be hard to ask and not only that but with some women who have an extra pound (not an extra 25-50 or 100) feel like they are fat we could not get truthful answers.....well truthful to them but not the truth.     
I am doing ok...........just have alot of issues to deal with but I go back to the surgeon this month, the oncologist this month and then my mammogram next month.   Everytime I think I have a handle on things, I read the HORRIBLE stuff and I slip back to the beginning in ways.   I don't have anyone to really talk to (a live person) about this type of cancer so I just mainly talk to who will listen or just deal with my emotions myself, but that is not good with a person like me with anxiety as my mind goes crazy with all these thoughts.  Overall though I am good.

How about you?

Stupidboob

anamerty.........my cancer did not show up either on mammography and I found it myself.   I learned that not all cancer shows up.  I will be going next month for the new 3D mammogram and I sure hope it can see what they need to see on my remaining breast.  Some studies are showing it is better than the breast MRI

sylviaexmouthuk

Hello Stupidboob

A lot of what you say makes very good sense. I agree that all these threads are very confusing and those that are not active should go. I think there are probably many risk factors to the development of breast cancer and being overweight may contribute.

I was sorry to know that you do not have anyone to talk to with reference to TNBC. You are quite welcome to post on Calling all triple negative breast cancer patients in the UK. I am quite willing to talk to you on there about anything you like. I am offering this because I am going to concentrate on this thread that I started over two years ago and that I consider to be a serious thread. It takes up a lot of my time, but I am dedicated to it, so I shall probably not post on other threads as it is too time consuming. On the triple negative forum it is mind-boggling to discover 48 pages and 1415 topics (threads). I find this way too much, especially as it is only the first few topics on page 1 that are active.

On the UK thread we do have American women and we can talk about anything connected to cancer, hormone problems and anything you like.

Wishing you all the very best. Try not to worry too much and just look after yourself.
Sylvia

InspiredbyDolce

EXCELLENT ARTICLE RE: TNBC - LIFESTYLE PRINCIPLES FOR RISK REDUCTION

http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html

sylviaexmouthuk

Hello everone,

I am glad to see this thread is still being kept active.

Best wishes,

Sylvia.

sylviaexmouthuk

Hello LintRollerDerby and Stupidboob,

I have been wondering what has happened to both of you. Have you stopped posting. I would love to hear from you. You can post here or on the TNBC UK.

Warm thoughts,

Sylvia.

sylviaexmouthuk

Hello to anyone looking. Please try to keep this thread going.

Best wishes

Sylvia

carlads

I am new to this thread.  I am 51 had regular mammograms just 3 weeks before my appt in Oct I found a lump.  Things have moved pretty quick since then. I had my biopsy on Nov 2nd went in to my surgeon on Nov 7th the only info he had at that time was IDC cell grade 2 size 1.7 to 2cm.  I was ok with all of that he said it looked totally contained, I had already decided on bi-lateral with Reconstruction at time of MX.  He sent me off to see Plastic Surgeon, surgery planned for dec 4th.  I decided I wanted to consult with an oncologist before my surgery to make sure I felt comfortable with him.  That appt was yesterday.  To my surprise he had more info on my pathology report.  He said I was triple neg!  Wow I could have fallen off my chair! I asked why my surgeon didn't tell me, evidently the other part of the report came back after my appointment. 

Really, as he put it nothing has changed as far as my surgery, he did say he didn't think I would need any radiation.  Well, it has changed for me I am meeting with my surgeon tomorrow and I really don't think I will do Reconstruction now.  It seems most women with TN don't do reconstruction.  Am I wrong?  Also he talked to me about having Chemo every two weeks instead of the normal every 21 days.  Did any of you do this?  I feel like I am starting all over again.

I also had my first baby at age 24 breast feed all four of my children. Which is supposed to help cut our chance of BC.  Sorry about the rant!!  Glad to know there are others out there and we will all be SURVIVORS! 

Prayers out to all,

Carla

triplenegativebutpositive7

Hi,

 I just joined this website and am newly dx'd triple negative. Thank you for a GREAT post- this was so informative. I know it is from 2009- hopefully you are all cured and free of cancer. Thank you for your post.

Andrea

triplenegativebutpositive7

Hi Carla,

    Don't ever apologize for "ranting"! We all need to RANT to keep our sanity! I am 54 yrs old and newly dx'd triple negative. No history of breast ca and did not have the genetic testing done. I do have 2 daughters and am now so worried about them. I do agree with many posts here though- there is so much unknown about triple negative. We need to keep posting on this site- I do have good friends for support but no one even heard of triple - breast ca. Its so frustrating because I'm not even sure myself. I'm reading so much about it but at times it seems daunting and depressing. I want to remain optimistic and positive!! Good luck on your journey- I wish you much peace and healing!

Andrea 

sylviaexmouthuk

Hello Carla and Andrea.

I was glad to see your posts on this thread, which have reactivated it.

Try to be positive about triple negative. There is a lot more known about it and it has definitely come out of the darkness since I was diagnosed in June 2005. It was not even named then.

I am living proof that you can survive this. It is now seven years,five months and ten days since I was diagnosed with a large tumour.

Keep looking forward.

Sylvia.

carlads

So glad to see new post on this thread.  Sylvia thanks for the encouragement.  That helps so much. Any info I for us we would so appreciate.

Andrea, we will also get through this!  I have do so much research on it we just really need to be pro-active.  My surgery is Tuesday.  My biggest fear is my nodes.  My BS said don't be alarmed if a few are positive..  I have no swelling and my tumor is still mobile (whatever the heck that means). 

Hope you all have a nice weekend.

Prayers,

Carla 

sylviaexmouthuk

Hello Carla

I have just read your post. I do hope all will go well with your surgery on Tuesday and try not to worry about having positive nodes. The treatment will take care of it all. I had one positive node (the sentinel node) and seven removed in all. I think your tumour described as still mobile means that it has not attached itself to the rib cage and that is good news, because it makes surgery easier.

You are more than welcome to post on the thread that I started Calling all TNBCs in the UK, whatever your receptor status is.

Good luck.

Sylvia.

jf64

Hi everyone,I am new to this site. I am 64 and have just had a lumpectomy with a 12mm grade 3 tumour,clear SN B and clear margins but diagnosed as TN. I have read some of these posts and am glad to see so many ladies who are survivors and so much helpful info. I am due to see the oncologist soon and will have chemo after Xmas, followed eventually by radiotherapy. I saw my surgeon again today to discuss a bilateral prophylactic mastectomy. She said it would make no difference to the outcome, which I find hard to understand but she will consider it later next year if I still want it. I have large boobs and they have been a source of anxiety for years with cysts etc and ther is breast cancer on both sides of my family. has anyone opted for this please?

Good luck to everyone.

sylviaexmouthuk

Hello jf64

I am just posting to say that I have just read your post.

I was diagnosed in June 2005, a couple of months before my 63^rd birthday. I had a large tumour and was also grade 3. I had chemotherapy before surgery, mastectomy of the right breast, three weeks of radiotherapy with boosters. Had seven nodes removed with surgery, but only one was affected, the sentinel node.

You can get through this.

Let us know what chemotherapy drugs you will have. As for a bilateral prophylactic mastectomy, only you can make that choice. There are women on the threads who are opting to do this. I would always prefer a mastectomy over a lumpectomy, but that is my own personal choice. I can understand your reason for a bilateral because of breast cancer on both sides of the family. Have you been tested for BRCA1 or BRCA2? This might be a good idea.

You have not said where you come from. You are welcome to post on Calling all triple negatives in the UK if you wish. I started the thread just over two years ago to bring TNBC out of the dark ages.

On the UK thread people post in from anywhere they like.

Thinking of you and wishing you well.

Sylvia.

LuvRVing

JF64 - When I had a local recurrence in March 2011, I opted for a double mastectomy and my surgeon supported my decision.  It should be your call, especially if you're here in the US.

By the way, I was diagnosed as TN in June 2010 at the age of 60.  I'm white, breastfed 4 children, negative for the BRCA gene, no family history at all, and took hormone replacement therapy for just a year.  Not a typical TN patient at all.