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

LRM216

I'm still here too - knock on wood!  Agree that this thread should keep on going.  Wishing all of you nothing but the best.

Linda

sylviaexmouthuk

Hello LRM216 (Marietta)

It is strange that you should have posted just when I was looking at your original post. I was glad to know that all is well with you. We have met before through our posts. I am glad that I reactivated this thread and that it is now quite lively.

I wonder what happened to CudaShuda. I hope she is well.

Hello to other posters, wherever you are – Stupidboob, anamerty, Lizardbeth6, LintRollerDerby, mrsnjband, and mitymuffin. I wonder what all of you are doing now.

Hello LuvRVing.

I suppose that if we are 50 and over we are not typical TNBCs since we are told these negative receptors are usually found in younger women.

I wonder what is causing it in both lots of ages.

Sylvia

LRM216

Hi Sylvia:  So thankful to you for keeping this thread going.  I too will assist in keeping it up there on the thread.  You have, and still remain, such an inspiration to me.  I only wish that each and every one of us could complete treatment and never again have to deal with this beast of a disease.  If only.......  Be well, dear friend, and am sending love and hugs across the many miles.

Linda

sylviaexmouthuk

Hello Linda

I apologise for getting the place mixed up with your name. I do remember your name was Linda and I do remember all your heartache over the death of your daughter. I also remember one of your posts on another thread where you mentioned loss of eyebrows during chemotherapy treatment. I lost all my eyebrows and eyelashes on docetaxel and even now they are not as thick as they were before treatment.

Thank you for your support in keeping this important thread going.

It will be interesting to see how many people post.

I agree with you that the awful thing about this breast cancer is that we cannot close the book once we have finished treatment. It is hanging over us for the rest of our lives.

I still wish there was more emphasis on prevention. I know that they say breast cancer is multi-causal and there are many risk factors, but with so many women being diagnosed, and very young ones, there has to be something causing it.

Thank you for your kind words. If we can all inspire and encourage one an other, that is a consolation.

Fond thoughts from the UK.

Sylvia xxxx

jf64

Thanks both of you for replying. I am in the Uk and guess options are not so open here.I am very worried about recurrence even after chemo esp.as my first grandchild is due next March.I want to be around to see her grow up!

When I find out about the chemo drugs I shall post again. I have not been offered Brac testing.

gillyone

Hello to everyone who is new - and hi to Sylvia! It seems there is no typical TN. I was 54 at dx, in pretty good health, white, breastfed one kid, no family history, etc etc and here we are! I am 3 plus years out from dx and if you look at my signature line it was not good information to hear! But I seem to be doing fine. I'm a Brit living in the US so have one foot each side of the pond.

sylviaexmouthuk

Hello jf64,

I want to say a special hello to a fellow Brit. Try not to worry too much. You can get through this. Try to take one thing at a time. For the moment concentrate on getting yourself through chemotherapy because it is the longest and most difficult part of you treatment. There are plenty of us on the forum to help you through it.

If you want to come and join us on the Calling all triple negative patients in the UK, you are more than welcome. I have put a lot of information there.

Best Wishes,

Sylvia.

sylviaexmouthuk

Hello Gill

It is always a pleasure to hear from you. I do not see you so much on the TNS now.

I think what we are trying to do on the thread is perhaps work out how many women 50 and up are being diagnosed with TNBC, because we are constantly told that women with triple negative receptors are mainly much younger. It is a way for all of us 50 and up to get together.

Another interesting fact is that if you develop this when you are older it is not easy, at least here in the UK to get genetic testing, even though we are told that triple negative is often associated with the BRCA1 or 2 gene. I was told I could not have it, even though there is a lot of cancer on one side of the family. I was told my case was a rogue case. I was never happy about this because there are always exceptions.

I am so glad to know you are doing so well. I have now gone nearly seven and a half years since diagnosis, when I was told the prognosis was not good.

Best wishes.

Sylvia

julz4

Hi all....I have been reading a while on the TN section. I don't know where I belong as I am not typical even for the not typical group. I was DX this past May with TN DCIS & microinvasive IDC. I only had to have RADS. I go for my first 6 month mammo next week. I can't wait till it's over. I've been feeling some pain & achyness for a month or so, my Rad Onc thinks it's all due to Rads but.....I know what really appears to be the Rads. But some of it reminds me of the achyness & pain that led me to get my mammo 5 months early this year. Oh I can't wait to get this over with. Its so informational to read everyones stories. Has anyone else not had the Chemo because their IDC was so small. I would really like to hear how your doing. I really think I'm such an odd duck!

InspiredbyDolce

I'm chimming in ... regarding the plastic surgery.  It's a personal preference.  I think (in reading the posts) the majority of TNBC patients do have plastic surgery.  I don't know why the classification of the type of bc would impact the decision to be reconstructed.  Is it because someone thinks they won't be around long enough to enjoy their newly constructed breasts? Not in this forum.    We are all extremely positive about the advances in treatment and the posts we get once in a while from some long-term TNBC Survivors.  I've come across a lady recently who was a 29 year Survivor, and her daughter was an 8 year Survivor.  They are here and thriving.  Remember too, that many Survivors go on with their lives, and aren't on here so much as time progresses ... they have moved forward with their lives and that's why we don't see as many of the sheer long-term success stories on here.  

For me, I chose BMX, because I was told "Prognosis will not change, but risk of recurrence goes down" which is in terms of local and local regional.  So I chose it.  Risk of recurrence was estimated from 10% risk down to 2-4% risk (before the TNBC diagnosis).  After the TNBC diagnosis, the risk of recurrence still decreased, but it started at a higher value (can't remember the number) but the mastectomy brought it down to 10% risk of recurrence.  So I was glad I had opted for the mastectomy.  It was not offered to me, as a preference.  My team explained the differences with each one (lumpectomy vs. mastectomy) and left it up to me.  Also, at the time, my original biopsy did not indicate TNBC, but my final pathology report did indicate it was TNBC.

Also, just found a very interesting study in this article, about a vaccination regarding TNBC:

*************************************************************************

Hey Everyone,

I just came across this article.  The first half talks about prelim results of a trial adding a certain mTor Inhibitor.  

But the real exciting thing, is the 2nd half of the article, talking about the vaccination.  

Look at this:  ..."The disease-free rate among the triple-negative breast cancer patients in the vaccine group was 83.3% compared to 47.6% in the control group—a 68% risk reduction. Due to the small patient population, the results are not yet statistically significant."...

www.cancernetwork.com/conferen...

It also said they recommend patients asking if they can go into this trial.  

What do you all think?  That is an incredible difference!

Have a great day my friends!

- TNBC Trial Vaccine, Triple Negative Breast Cancer Trial Vaccine

LRM216

Hi to all:

Sylvia, I too never got my brows or lashes back after the taxotere, as they were before chemo.  Also, my hair, althougth it looks "normal" to the average person, it came back in thinner than it ever was.  I am fortunate that no bald spots - but definitely a lot harder to style because of the thinning that has taken place.  I am out to long to hope it will change, and the drug manufacturer of Taxotere does now state that 7% of us taking taxotere will suffer permanent hair loss - totally or to some degree.  Ahh, the benefits of chemo!  But I am still here, so I have to be thankful for what I do have after chemo.  And thank you for your remembering my loss, I miss my daughter dearly -  everyday - every hour of the day, but life has a habit of going on no matter what occurs, and so must I.

jf:  Since I was diagnosed at age 62 with no family history of any cancer whatsoever on either side of my family, I was denied the BRAC testing as well.  I tried to fight it for my girls sake, but was still denied.  My daughter, however, had no trouble having the test done, since her father died of esophogeal cancer many years ago, and now I, her mother, have the BC.

And sending best wishes for all good things to all on this thread.

Linda

gillyone

I am one of those whose hair is very thin when it grew back. However I had Taxol not Taxotere. My eyebrows are thin (and I'm very pale!) and eye lashes hardly there. Sorry if it's TMI, I can even tell a difference in the nether regions. Like Linda I am too far out from chemo to expect any changes now. The texture of my hair is very different too. I have a theory about chemo hair loss pre and post menopause. It seems to grow back well pre, and not so well post. Just an idea?

I was not offered any testing either.

HollyHopes

dear one,

i am a bit younger than you - 51 at diagnosis, but otherwise am your twin...

sylviaexmouthuk

Hello Linda

It looks as though we pay a price with our eyebrows, lashes and hair with the taxanes. Although some of us have docetaxel (Taxotere) and others have paclitaxel (Taxol), we have to remember they are both taxanes and probably doing more or less the same things, and having the same side effects. When I first started reading the threads, I thought it seemed more common for Taxol to be used in the US and Taxotere to be used in the UK and Europe. I did ask my oncologist why she had chosen Taxotere for me and she said it was because it was less harmful to the heart than Taxol.

It is frightening to know that the drug manufacturer of Taxotere now states that 7% of users could end up with permanent or partial hair loss. I would think it is the same with Taxol. I think that would be very distressing for newly-diagnosed patients. It is upsetting to know that we shall lose our hair, but so much more distressing to know it may not grow back. I cannot think how I would have felt about that. I suppose in order to stay alive I would have had to accept it.

It looks as though we older women are not allowed genetic testing, but I think all women should have it.

I do hope one day we shall all be able to have a simple blood test to show that we are developing cancer. There is a lot of talk about it and it would be so much better and safer than mammograms.

Do you have any other children?

Wishing you all the very best.

Sylvia xxxx

sylviaexmouthuk

Hello Gill

It looks as though we have all suffered with hair, eyebrows and eyelashes. I suppose it is a small price to pay for being alive, but I do hope that less lethal treatment is not too far away. I am another one that is too far out from chemotherapy to expect any changes, but I live in hope! I think there are products for making eyelashes etc. grow, but I would be afraid to use them. Have you heard of any?

The texture of my hair is different as well. It is not as naturally wavy as it was and not as thick.

I think you could be right about chemotherapy hair loss and whether we are pre or post menopause. I have read that our hair is thinner after menopause anyway.

Keep well.

Best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello HollyHopes

It looks as though probably all of us post menopause or 50 plus are in the same boat. I did not have my menopause until I was 55. Apparently that is late and a risk factor for breast cancer.

I am glad you are doing well.

Best wishes.

Sylvia xxxx

LRM216

I wasn't aware that late menopause was a factor in BC - learn something new everyday!  I was 54 when I experienced true menopause and never again had a period, so I guess I'm right there with you, Sylvia!  In answer to your question, yes, I have my first-born daughter, alive and healthy, thanks be to God.  She lives in Minnesota which is quite far from Georgia, where I live, but she flies in often to see us all. Her sister (2 1/2 years younger) was the daughter I lost.  Hard to believe at times that this will be the second Christmas without her - as at times, it seems like just yesterday I was holding her in my arms.  While I dread the holidays without her, as she loved Christmas so very much, I give it my all - with a smile on my face, but a hole in my heart, for my grandchildren, and in honor of her, as that is what she would want. 

And speaking of the forthcoming holidays and Hanakuh (sp.?) beginning today, I extend my warmest wishes to all, and that you may all be surrounded by the love of everyone dear to you.

carlads

Hi All,

I am 4 days post surgery and feeling good. Surgery went well. My surgeon said he was very pleased everything came out clean. He said with the nuclear dye my sentinel node had tiny positive cells. He said it's like being a little pregnant.... so due to that, pathology protcol calls for auxiliary disection. He did say the nodes he removed looked good, but here I go again with the worry. At the time of surgery I was considered aT1. I have searched this sight to try to figure out staging after surgery but I am having a little trouble figuring it out. I know if the nodes are involved it raises the stage but by how much??

I know I should just wait for my appt but like we all know waiting is the hardest part. Thanks for any info.



Prayers to all,

Carla

sylviaexmouthuk

Hello carlads

I was glad to know that your surgery went well and that you are feeling well.

Just wait for your consultant to tell you the results. You should know your stage, grade and size of tumour. You should know your receptor status, whether you are triple positive, triple negative or the most common oestrogen positive, progesterone positive and HER2 negative. Are you having chemotherapy and radiotherapy post-surgery?

Wishing you well.

Sylvia

sylviaexmouthuk

Hello Linda

I have read quite a few times about risk factors in the development of breast cancer. We have to remember they are only risk factors and do not mean they necessarily caused your cancer. They are starting your periods early, having a late menopause, not having had children or having had your first child late, 30 or up. There are all sorts of risk factors, so I suppose it depends how many boxes you tick! Some people may tick all the boxes and still not develop it!

I am glad you get frequent visits from your other daughter. I can understand how difficult it all is for you, especially at Christmas time.

By the way, do you have any osteoporosis as a result of your cancer treatment? It seems that there is a lot of trouble with bones after chemotherapy and radiotherapy.

I have read a couple of other threads that I find interesting, in addition to the ones about triple negative breast cancer. They are Parathyroid disease and breast cancer (Forum IDC Invasive ductal carcinoma) and High calcium (Forum Not diagnosed with recurrence or mets but concerned). You are welcome to post in Calling all triple negative breast cancer patients in the UK whenever you like.

Seasons greetings.

Sylvia xxxx

carlads

Sylvia - I knew from my biopsy size was 2cm and cell grade 2 and TN... thats why I am so thankful for this thread. The TN through me for a loop, but I know Chemo works well and I plan on living to be an old women...



NavyMom - My son is a Coast Guard came a week before my surgery and DH just left to take him to the airport. He is in Texas not out of the States but broke my heart again to say goodbye. I hope you are doing ok and I am happy you will be with your Grandson and Daughter-in-law for Christmas.



Everyone have a great Sunday..



Prayers for us all,

Carla

Luah

I believe the risk factors of early onset menstruation and late menopause (as well as pregnancies and breast-feeding, both of which affect hormone production) relates to estrogen-positive BC, not TN. It suggests the woman may have higher levels of circulating estrogen, which ER+ BC is receptive to.  

Carlads: You'll know more from your full surgical pathology report... and then a full treatment plan can be planned for you.

A key variable will be the extent to which the nodes are involved. Isolated tumour cells (or ITCs) are generally not considered all that worrisome. There is some research now showing that radiation of modes with micromets (> 0.2 mm but <2.0 mm) may be as effective as axillary node dissection. Nodes that show > 2mm cancer cells are generally treated with additional surgery. It is worth discussing these factors with your doctor, depending, of course, on how your pathology turns out. Hope your surgical recovery is uneventful. 

sylviaexmouthuk

Hello Luah

With reference to risk factors, the ones I mentioned are general risk factors. I think it is important to remember what my oncologist told me about my triple negative breast cancer, which was that tumours mutate and that my breast cancer did not necessarily start off as receptor negative because of this general fact about this general fact about mutating.

Apparently long term use of Tamoxifen, after treatment of hormonal cancer, can result in a new tumour that is triple negative. We also apparently have ideas of manipulation of turning triple negative tumours into hormonal so that they can be treated with the anti-hormonal drugs!

There are many risk factors including problems with thyroid and parathyroid glands, metabolic syndrome, being overweight. It seems risk factors are never ending, but as my oncologist and breast cancer surgeon also pointed out, because you have or had a risk factor it does not mean the risk factor caused the breast cancer. I think there are too many women getting caught up in what might have caused their breast cancer and I do not think they will ever really know. No doubt the development of cancer is multi-causal. All we can try to do is eat healthily, keep active, avoid stress that we find negative, and avoid too many chemicals in our everyday life, such as toiletries and household products. The most important is not to let cancer take over and enjoy each day as it comes to the full.

I hope you are keeping well and send you best wishes from the UK.

Sylvia

sylviaexmouthuk

Hello everyone,

Please post here if you were 50 and up when diagnosed.We are trying to find out how common TNBC is in this age group. Also have you developed osteoporosis as a result of your treatment?

Best wishes Sylvia.

Loafer

Hi everyone - glad I found this post. I am 51 and TN. Since I'm adopted, I got the BRCA test covered by insurance and I'm grateful the results are negative. I was healthy and diagnosed peri menopausal which doesn't fit most of these risk factors. I am curious about recurrence rates for this situation as well as info on the vaccine I saw mentioned. I am in 3 rd round (of 4) of chemo treatment with plans to move on to rads now that results are negative. Thanks for all of your support and advice.

sylviaexmouthuk

Hello Loafer

I was interested in your post. Since you mentioned that you were adopted that opens up another perspective on women being diagnosed with breast cancer and who do not know the family history of their birth parents.

I was so glad to know that you were able to have the BRCA test since it was covered by your insurance and that the results were negative. It is one less problem with which you have to deal. I do feel that we all need to be screened for these genetic tests because even if we are told we are not likely to have BRCA1/BRCA2 genes because of the age at which we developed breast cancer, there are always exceptions.

I do hope all will go well with your chemotherapy treatments.

I would not worry about recurrence rates at this stage in your treatment. It is best to focus on your chemotherapy as this is often the most challenging and the longest of the treatments. After that concentrate on your radiotherapy.

I do not have actual statistics about recurrence rates but I have read on these threads and elsewhere that the greatest risk of recurrence is in the earliest years and that after that the risk decreases. Since all our breast cancers are individual, we cannot really know whether there are any hard and fast rules.

I do not know too much about a vaccine but there are a lot of trials in progress for the treatment of breast cancer with triple negative receptors. If you are interested in going into a trial, probably the best thing is to talk to your oncologist.

Wishing you well. Keep looking forward. Your chemotherapy journey is almost over.

Best wishes.

Sylvia

Loafer

Thanks for the response, Sylvia. I was very fortunate that my BRCA gene tests were covered by insurance. Without any knowledge of my family background, my Onc had to write a compelling case. He did a great job because it was approved the first time, despite the concerns of the genetics testing counselor. When you are adopted, it makes it very easy to fill out the forms asking about hereditary medical conditions!



My adopted family has no cancer, so it made this diagnosis, more difficult to understand. Will continue with my healthy lifestyle and focus on taking care of myself.



I am optimistic about this journey and moving forward!



Thanks again for caring!



Ginny

sylviaexmouthuk

Hello Ginny

It was nice to hear from you. It looks as though for medical purposes it would be nice to have the medical records of your birth parents passed on when a child is adopted. I have a friend here whom I helped through her cancer treatment and she told me that she was adopted and knew nothing of her birth parents. She was diagnosed about a year after me, but with hormonal breast cancer. She had a lumpectomy and radiotherapy.

Only those who have been through cancer can really know what cancer patients go through and can help.

You are right to continue with a healthy lifestyle and with taking care of yourself.

Continue to be optimistic.

Have a nice Christmas day and look forward to a happy, healthy New Year.

Best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello everyone.

I see that this thread created by Icudashuda in 2009 is fast disappearing off the first page. Are we assuming that there is no such thing as a non-typical triple negative? If so what is the definition of a typical one??

Kind thoughts.

Sylvia

triplenegativebutpositive7

Thank you Sylvia for your sweet reply! Had port placed today-very painful but still able to sit on computer for support! Start chemo Friday (ACT) and then radiation. Trying to remain positive. Thank you for your feedback and hope life is good for you!!

Andrea