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

Frankie1

Hi everyone



This is my first time posting on here although I have read a lot since being recently diagnosed. I am confused as just received pathology report and I have dcis high grade with microinvasion. I am due for radiotherapy in 2 weeks after having left breast masectomy in December. I have been told will only receive radiotherapy and no other treatment due to triple negative status. If anyone could help me out as I have really dont understand and have read lots of conflicting stuff on the web. Thank you for your time.

gillyone

Hi Frankie. Please remember we are not doctors here when we give advice. We can only comment from our own experiences and research. That saying, I believe that you are receiving rads because of your DCIS diagnosis and had a mastectomy. It has nothing to do with being TN. TN status affects what kind of chemo/hormonal treatments you may receive. TN means you are not hormone receptive (er-/pr-) and so would not benefit from the anti-hormonals like tamoxifen or femara. Many TNs do receive chemo - that usually depends on stage (0 - IV), lymph node involvement or distant mets. The other component of TN is the Her2. Those who are positive usually receive herceptin, but it offers no benefits to TNs. Hope this helps!

sylviaexmouthuk

Hello Frankie1

What gillyone has said is perfectly true. We can only relate our personal experiences and can encourage, comfort and support other women. You should keep talking to your oncologist and breast cancer surgeon and decide what is best for you.

I have friends who had just lumpectomies and radiotherapy for small tumours that were either IDC or DCIS. It was not thought that they needed chemotherapy. If I can be of any more help, please let me know. You can get plenty of help on Calling all TNS or on the thread that I started Calling all triple negative patients in the UK, where anyone can post from any country, not just the UK, and where we have a lot of lively discussions. I devote a lot of time to this thread.

Wishing you well. Takes things slowly and one day at a time.

Best wishes.

Sylvia

sylviaexmouthuk

Hello Andrea.

It was good to hear from you. I hope all will go well on Friday when you start your chemotherapy. Focus on this for the moment. What kind of regime will you be on, weekly, two weekly or three weekly? Get plenty of rest, drink plenty of fluids and keep looking forward.

If you would like to come and join us on Calling all triple negative patients in the UK, where we have other women going through treatment, you will get plenty of support from all of us and go through your treatment with others going through it. Women post here from all different countries.

Best wishes.

Sylvia xxxx.

netty46

In regards to not being typical. My doc just attended San Antonio Confernce in December 2012.  Said they realize there is  subtype of TN.  There is the group that gets TN and recurs within 2 years or under 5 and then the group who goes on past 10 years and still no spread of desease.   This might help to find a cure.  I know a few women in this second type.  There is one here past 19 years, 25 years, 26, years etc.

sylviaexmouthuk

HelloNetty46,

I think when this thread was first set up it was about age. We are told that TNBC affects mainly fairly young women and women of 50+ were posting in about being diagnosed.

Best Wishes,

Sylvia.

sylviaexmouthuk

Hello everyone, I though I would bump up this thread to try to get it active again.I am interested to hear from older women diagnosed with breast cancer with triple negative receptors as this is supposed to affect mostly younger women.

Best Wishes, Sylvia.

Mishi

I'm Caucasian , 52, neg genetic profile, this is a secondary cancer probably the result of radiation treatment for Hodgkin's lymphoma 23 years ago. Tumor was found on routine mammogram after I had had a negative ultrasound 6 months previously.

Missy123

I was 53 when diagnosed.

sylviaexmouthuk

Hello Mishi,

I was most interested in your post. I was especially interested in what you said about being diagnosed with triple negative breast cancer, probably as a result of radiation treatment for Hodgkin's lymphoma twenty three years ago. It just shows me even more that both chemotherapy and radiotherapy treatment can come back to haunt you years after the treatment. We need to find alternative treatment that is not so lethal or even better spend more money of prevention.

I do hope that everything will go well with your chemotherapy treatment. I have noted that you are on a combination of carboplatin (Paraplatin) and paclitaxel (Taxol). This is not the common combination for treatment, but you probably already had the other ones with the Hodgkin's lymphoma.

I think there are not quite a lot of women in the 50+ age group being diagnosed with triple negative. I wonder what is causing this?

We do have a man on the Calling all triple negatives in the UK thread and he had Non-Hodgkin's lymphoma in the past and he is waiting for treatment again. I hope you will not mind if I copy this post onto that thread as well and please feel free to come and join us if you want. People are posting from all over the world.

Take care and let us know how you get on.

Best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Missy123,

Thank you for your post. You are yet another person diagnosed with triple negative breast cancer and in the 50+ bracket. It is obviously affecting post-menopausal or pre-menopausal women in quite great numbers. Have you any idea why?

I hope you are keeping well.

Love.

Sylvia xxxx

JaneB1

Also 53 when dianosed with triple negative.  I had none of the triple neg risk factors.  I'm Caucasian with no family history.

Spica16

I'm yet another Non-Typical!

I was diagnosed with TNBC just one month before my 58th birthday. I'm Caucasian with Eastern European ancestry (Czech/Polish/German). No family history of BC, but some possible cancer suspects from my Dad's side. I have a male cousin who had pancreatic cancer, an aunt (mother of the cousin with pancreatic cancer) who had some type of fast, agressive cancer - I was too young to know, and now all those family members are gone, so I will never know, but the genetic counselor and I wonder if it wasn't ovarian cancer, by the nature of it's agressiveness. And now me, with TNBC. However, I am BRCA negative. My Mother's side of the family also has no known suspect cancers, but is too small a sample to be reliable.

Being under 60 years old and TNBC allowed me to be tested, and have the test covered by insurance. It is a great relief to be BRCA-negative, because I have 2 daughters. It would also affect my brother's family, as well. The BRCA mutation can be passed on by either parent, with each child having a 50/50 chance of receiving it. Each generation is at risk.

With no family history of BC, and no BRCA mutations found, it seems I just "won" the luck of the draw for a sporadic breast cancer. Lucky me.

Sylvia - I think they will soon have to change the description of the "typical" TNBC patient. There are so many older women, with a far wider range of ethnic backgrounds presenting with TNBC. 

sylviaexmouthuk

Hello Spica16,

I have just read your very interesting post. I do agree that we shall probably have to change the description of the typical TNBC patient. It is true that lots of older women of all different ethnic backgrounds are being diagnosed with these triple negative receptors. I do not have any statistics at hand but when I first started reading about TNBC I think I remember reading that African-Americans and Hispanics were more likely to get it than whites. That may have changed.

Although older women are getting it, it could still be that it is affecting greater numbers of younger women. I find it very disturbing to read on bc.org that more and more women between the ages of 20 and 39 are being diagnosed with metastatic breast cancer. I have not had time to read it in full yet.

How are you feeling post treatment?

Best wishes.

Sylvia xxxx

po2

I was diagnosed July 2012 at age 52 with TNBC; no family history of BC.  I am a dietitian and have tried to live my adult life decreasing the risk of breast cancer (healthy diet, physically active, breast fed all three of my children).  Somewhere on-line I read a small article that connected women with scoliosis and triple negative breast CA.  They think that x-rays performed just before and during early puberty could be a promoter.  I do have scoliosis.  Is there anyone else out there with scoliosis and diagnosed with TNBC?

Patti777

It is just very converting to see others with this. Did any of you have to have 6 months of Chemo? Just wondering why so long

sylviaexmouthuk

Hello po2,

I was surprised to see that this thread had been reactivated. It seems to come and go. There are a lot of interesting posts on here. I was diagnosed with TNBC in 2005 and with hyperparathyroidism at the same time. There is research which says there could be a connection between the two, but not conclusive about what causes what. It also says that both may have been caused by something such as x-rays as a child. It would certainly be interesting to know of more cases of scoliosis and BC. You might be interested in the High calcium thread in Not diagnosed with mets but concerned thread, as well as Hyperparathyroidism and breast cancer thread in IDC invasive ductal carcinoma.

Wishing you well.

Sylvia.