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

violet7

I do not know if I am a typical Triple Neg.  Here are my stats:  I was diagnosed at 44.  I have quite a mixed background:  Swedish, Norwegian, Danish,German, Polish (possibly Jewish via this branch of the family, still tracing it), Russian, Tatar, & Mongolian.  I am ashamed to say that I began smoking at 14 and continued on-again-off-again until I was 33.  During that time I was a slender vegetarian who got plenty of exercise.  I did take birth control pills a couple of years, but did not like them.  At 33 I got pregnant with my first child.  My weight sky-rocketed.  I was eating more than previously and I added meat, but I mean I really blew up from the 120s to the 220s right before giving birth.  I was terribly swollen with water.  One 2 week period I gained 16 lbs!  My hormones were insane in my opinion.  I nursed my daughter for 8 mos.  Lost weight.  A few years later I got pregnant with my son and once again I blew up.  I nursed my son for 16 months.  My weight is currently in the 160s.  I eat a whole foods diet and I walk at the beach nearly everyday.  Last year I was dxed with endocervical cancer.  I had a radical hysterectomy including ovaries out and was slammed into menopause at 43.  I was prescribed a local estrogen cream to keep my vajayjay from atrophying and producing false positive pap smears.  It is not supposed to go systemic.  I've stopped using it because I don't know...I don't trust anything...  I had had breast tenderness and a twinge under my arm for about two years occassionally in the two spots where the cancer was discovered.  I was on time w/mammograms.  The lump appeared out of nowhere and was hard to distinguish from other breast tissue.  Until my hysterectomy I had always come up increasingly estrogen-dominant on my pap smears.  I was shocked to discover I was negative for these factors. 

bf2009

Guess I belong to this group as I'm triple negative, white and 50 ( not young). I do not believe there is any family history either EXCEPT there was mention of my mothers mother dying of mysterious causes in her 30's. Because they were in the country in europe and had no access to medical care, and it was also during world war 2... they really were not sure what she died of and it was said "most likely hard work" as they were farmers. I'm starting to wonder if she had breast cancer.

Other than that, I had no reason to believe I would be triple negative as I am not from a low socio-ecomic status either. I fit non of the criteria I read online about it.

I do not have children and thankful as it would be a terrible thing to have a daughter who could have the genes or whatever it is... from me. I've always worked and maybe due to high stress I have this, or all the right conditions to make it show itself. who knows, but I'm triple negative and fit none of the criteria listed as to who usually gets this.

PauldingMom

Don't feel like I fit into the triple neg. mold either. Pre-menopausal, okay thats me. But as far as I know I am white. My dad was adopted but have little doubt he is also white. Blondish hair, when I had hair, and blue-green eyes. Braca test came back neg. Mom has B.C. too but not till she was 70 and it's not genetic. So go figure?? I'm average weight which basically means I need to loss a few. I stay active and exercise at least 5 to 7 times a week. So what gives??? Where did this big ole lump come from and more importantly is it going to come back. 

I often wonder now that I have completed surgery, chemo, and radiation if I did the right thing going with the lumpectomy.  My surgeon was behind the decision 99%, but after the pathology report said the tumor was more than twice th3e size originally thought to be, I'm wondering if is still the right decision. 

I have three children and all were breast fed for at least 6 mos. One for 16 mos. He was just a pig,  

carolinachick

PauldingMom,

I also had a lumpectomy, although my tumor was smaller than yours (1.7 cm).  My surgeon recommended it and said that the lumpectomy and radiation were as effective as a mastectomy.  Most of the time I am glad that I chose to keep my breasts, but I do wonder if I would be less worried about a recurrence if I had chosen a bilateral mastectomy.  Knowing how aggressive TNBC can be, I'm not sure if I made the right decision.  I felt so rushed to make a surgery decision once I was diagnosed.

Jennifer

kmartin

I was dx at 48, am white, no fam. hx, BRCA -

 Kathy

hope2

hi ladies,

i dont think there is a typical trible negative, i am 35, white and irish, no children the lord was not willing. there is no family history either but the one thing we seem to have in common besides tnbc is that all out lumps were painful. i had two lumps and both were extremely painful, it got so bad that wearing a seat bealt was a struggle. After the inital mammogram i thought i would cry with pain in my left breast, those lumps really objected to being squished, not helped by an absecess the size of an orange in breasts that were already quite small. my tumour was just over 8cm and had grown on the chest wall.

Does anyone know how to releive neck and shoulder strain, i do all those stretching exercises but i am like i have a constant crick in my neck, i think it is from the way i am lying in bed as could not turn on my left side for so many months. would a special pillow help? my side is fine now but orignally the lymp node scar and tube scars were very painful and was scared of lymphedema.

starwatcher

55 at diagnosis.  I found lump and enlarged lymph node.  Daughter (age 29 at that time) diagnosed 2 weeks later after finding breast lump and biopsy later revealed + lymph node as well.  She had clinical breast exam approx 3 months before with nothing noted.  No other family history and she tested negative for BRCA.  We went through treatments together, but at different facilities and compared notes.  Seems that diagnosis of TN leaves you in limbo after completion of chemo, surgery, radiation.  Oncologists rely on symptoms, etc.

Karen3

Hi Wink and all my other triple neg sisters

I am in the UK and was diagnosed with Basal Triple Nagative on 8th September. My lump was very painful and still is at times (I am having chemo prior to surgery). It was suggested that, because they only have chemo to treat this type of cancer, I should have chemo first to ensure they 'got it right'. I am supposed to be having 8 cycles of chemo in all every three weeks. I began at the end of September with cyclophosphamide (Cytoxan) and Epirubicin (Ellence). But after two cycles of this, an MRI scan showed that the tumour was not responding and had actually grown! So, they switched me to Docetaxel (Taxotere) and I have had two cycles of this. Although my last infusion was Taxol (not sure if Taxotere and Taxol are the same). I have another MRI scan on Wednesday and they have said that if the tumour is not responding to this chemo, I will go straight in to surgery. My great worry is that, as they only have chemo to treat me and I will get no follow up drugs then what next? I cannot tell you how very scared I feel. I too have felt annoyed about the lack of treatment / knowledge about this type of cancer.

I am also being tested for the BRCA gene. I have a strong family history (mum with ovarian cancer, maternal aunt with breast cancer and maternal uncle just died from pancreatic cancer). I have been told that basal triple neg is very common with the BRCA 1 gene. They are trying to get the gene test done before Christmas because if I test positive, then they recommend the removal of both breasts and ovaries. So, knowledge about my BRCA staus will inform the type of surgery I have to deal with this.

 Karen X

 

NavyMom

Hi Karen,

Hang in there.....you are not alone.  Please let us know how you are doing with chemo and your test results.  Waiting for information and results is very difficult.  Stay strong--you can do this.  We are here to help.

Navy 

PauldingMom

My doc . said not MRI because it would just show up stuff that wasn't important. Anyone else here NOT getting an MRI scan?

sylviaexmouthuk

Hello Karen3

I read your posting with great interest, and hope that you will have read some of my previous postings, as I think they may be of help to you.

I was particularly interested in your case because I have been searching on the forum for someone in the UK with triple negative breast cancer. I was diagnosed with TN in June 2005 and at that time it was not even referred to as triple negative. I did a lot of research on my own. I was told that my triple negative was probably basal, but I do not think they tested for it.

I had a very large tumour in the right breast and had the same chemotherapy treatment as you are having, prior to surgery. The tumour did shrink a bit. I had four cycles of Epirubicin and cyclophosphomide and then four cycles of docetaxol (this is also called Taxol or Taxotere). Sometimes paclitaxol is used (also a Taxol). Docetaxol is a very effective treatment.

You do not mention your age, and this is very important with reference to hereditary breast cancer. I was told it was more likely to be hereditary in a younger woman. I was 62 when I was diagnosed and was told my cancer was unlikely to be hereditary, even though my maternal grandmother died of breast cancer with secondaries at 70, and two of her male children died of cancer in their 50s and 60s. I was told I did not qualify for genetic testing. If you are getting the genetic testing that is a good thing.

Try not to worry too much. I am still alive four and a half years after diagnosis. Following chemo I had a mastectomy with removal of seven lymph nodes, only the first one, the sentinel, was affected. I had a good pathology report after surgery. Finally I had three weeks of radiotherapy with boosters. After that I had CT scan and a bone scan, and was told there was no visible sign of cancer in my body.

I also felt worried that there was no follow-up treatment, unlike the 85% of women diagnosed with hormonal cancers, who are put on Tamoxifen or other drugs, or the other women who are put on Herceptin. However, these drugs all have serious side-effects, so I learnt to look at it in a positive way in that I could do everything in my power to get my body strong again. Try to be positive, look after yourself, and take one day at a time. Remember that trials are going on to find treatment for TN cancer.

I was interested to know that you are a teacher, as I am a former teacher, now living in retirement.

Wishing you all the best.

Sylvia

Karen3

Hi Sylvia

Thanks so much for your response - it's also good to find someone else in  England who has been through the same treatment as me and come out the other side! You are a teacher too so we have a lot in common!

I was diagnosed just after my 46th birthday in September this year. My mum had ovarian cancer when she was 48 years old. Her sister was 65 when she was diagnsed with breast cancer and my mums brother has just died of pancreatic cancer earlier this year and he was 62. Hope this helps with the research XX. I am not sure about the family history before then because both of my mums parents were adopted and so there is no recored of previous family history on mums side.

I had an MRI scan on Wednesday to test whether the tumour is responding the Taxol / Taxotere. I know they were hoping the tumour would 'melt away' but I can still feel it and at times it is still painful. Anyway, I get the results from the consultant Oncologist on Monday. I have been told that if I am not respondinf sufficiently well to this chemo I will be straight in to surgery. I'll let you know what happens.

Best of luck to all my other 'triple negative' sisters on here and thanks NavyMom for your good wishes.

swastew

First diagnosis - Nov '98 - left breast, triple negative. Lumpectomy, chemo and radiation followed. Celebrated 10 years of being cancer free....then diagnosed again in Jan. '09. This time it was the right breast - almost mirror image of where the tumor was on the left breast. Found I was BRCA-1 positive - had a bilateral mastectomy in Feb. - followed by chemo.

I have lost many family members to cancer, but NOT ONE had ever been diagnosed with breast cancer. I am white, English decent, 41 at first diagnosis - 51 at the second. 

Thoughts and prayers to all that are battling this nasty cancer!!

Anonymous

I am also a part of the "atypical" TNBC club.

TN tumors often hurt *because* they are so fast growing... they quickly displace nerves & tissue and therefore result in pain.

Believe me when I say that I tell ALL of my friends to NOT disregard a painful lump because of standard thoughts/practices on what constitutes a malignancy.

herlanda1

LouAnn

Your situation is exactly what brought me to this thread. Had simple masectomy of left breast  (stg I,gr 2, 0/3 nodes inv.) in Nov. 08. Finished chemo Aug 7 09. Due for reconstruction soon (2010). Wondering if I should just get the right breast done (masectomy with recon) as well. No family history of BC or gene related cancers (exception being those that smoked). I am 58, TNBC as well.

sylviaexmouthuk

I have noticed that everything is very quiet. I hope this means that every one is ticking along nicely with no major problems. Best wishes to all of you.

jjhuntt

Hello everyone,

I'm new to this board, but after reading all of your situations, I thought I'd add my two cents.  I work for a breast cancer surgeon in an office of 14 women. Statistically, someone was going to get BC, but no one would have guessed it was me. 41, caucasian, no family hx of cancer at all, and no medical issues.  Dx. back in Nov. triple neg. with a 2.7cm tumor, ki-67 100%, and p53 100%.  Mammos were clear in May, found the lump on Halloween.

After reading this board, most of y'all realize that there is no rhyme or reason to this disease. Researchers are targeting triple negs now because our rate is slowly increasing.  There are some theories:  un-identified gene, dietary connection? I have diabetes in my family tree even though my health is perfect other than BC.  They are really looking hard at the p-53 gene now because when it functions normally it's protective, but when it gets mutated its seems to "allow" the tumor to grow much faster. But, no one has proven how the BC got started to begin with.  My doc thinks it's still a combo: stress, diet, genetics, environment, etc., and when the conditions are right it happens (like a tornado). 

Good news is that therapies are getting better and more targeted. I am doing a fairly new chemo regimen with promising results, will have double mx at the end of Feb, and do some follow-up chemo then reconstruction. 

As far as testing, if you have no relatives with breast or ovarian, most insurances won't pay for BRCA testing and it's a $3500 test in the US.

swastew

JJhunt - so sorry to hear of your diagnosis  - you have come to the right place!

Could you explain what the P53 gene is??

LouAnn

jjhuntt

I'm not really sure exactly because I'm a social worker, but our pathologist says it serves a guard gene sometimes called the "guardian angel" gene. It keeps a cell from dividing if it's damaged. Not sure how it works, but if p53 stops doing its job a mutated cell (that's what cancer is) can go ahead and divide.  Someone on one of the earlier pages explained that she had ki-67 of 100% which meant every one of the cancer cells they saw under the microscope could divide or was dividing and a high p53 means the cells contain the damaged p53 (I had 100% on both) which is why I had to do chemo first - to shut down the BC factory.  It's working by the way, my tumor has really shrunk. I have 2 more rounds of chemo before surgery.

JJ

angelsabove

JJ---------my ki-67 on pathology report was 88%...I thought it meant it was a fast divider.....

Not sure about the P53 thing....Is that on the PATH REPORT?????

 I am also grade 3.....I was once told....grade and Ki67 go hand in hand....

Not by Onc......I think it was on one of the forum.....

Would appreciate more explanations of this....

MAY GOD BLESS US ALL 

sylviaexmouthuk

Hello Alex in Zurich Switzerland.

I have been wondering what has happened to you since we were last in touch. I have tried to find your reference in the forum but have had no success. I am posting this in the hope that you will see it and hope to hear from you. If anyone else in the forum has any news I would love to hear from them.

I was also wondering how Karen3 in the UK is getting on. I would love to hear from you.

All you triple negative ladies will be interested to know about a short article I found in a UK newspaper about TN cancers by Dr Justin Stebbing. He is a clinical senior lecturer at Imperial College in London.

In the article he writes about a new class of drugs called PARP inhibitors, which could be used to treat TN cancers. He wrote that interesting data have now been seen in TN breast cancers, which have a similar genetic make-up to the tumours in patients with a strong family history of breast cancer.

He further wrote that there are two PARP inhibitors in late-phase drug development and there are studies with other drugs, such as Avastin, which inhibits the blood vessel supply to tumours.

Best wishes to all.

sylviaexmouthuk

I have noticed that this forum for women who do not consider themselves typical Triple negative breast cancer patients has gone dead. What is happening? I have noticed that the Calling All TNBCs Forum is very active. Has everyone switched to this forum? Since it is mainly being an older woman that makes a person not typical,does it mean that fewer older women are now being diagnosed?

I  have now gone past the five years since diagnosis for a very large triple negative breast cancer.

I would love to hear from older women. I am coming up to 68.

LRM216

Sylvia :

I was diagnosed Feb. 23, 2009 at the age of 62.  There are quite a few of us here and on the TNBCfoundation.org site that are our age.  Seems to hit too many of us, no matter what our age.  So encouraging to hear you are 5 years out - that is my prayer.  Wishing you nothing but the best,

Linda

EllenGrand

Yes, I'm not typical either:  white, postmenopausal, age 58 @ Rx, no family history of BC, BRCA 1 and BRCA 2 normal.  Dx in 2007 and all check ups and tests to date have been normal.

cc4npg

Talk about not fitting... I'm in total shock at my diagnosis.

Ok, so I do have Hungarian background, but not Jewish to my knowledge.  I was diagnosed Sept 2, based on Microcalcifications!  There was NO lump.  Furthermore, biopsy showed grade 2 tumor.  I will have surgery Oct 7.  I am white, 43.  I had the BRCA testing done.  My half sister had breast cancer 6 years ago, single mastectomy, ER+, and is doing well.  No idea about her testing but she said she volunteered for a blood test which was negative.  And my results?  With being triple negative??  Just came in yesterday as BRCA2!  I can't find hardly anything online about being BRCA2 and triple negative other than it's a rare happening.  Scared to death... don't know what that does to my chances for survival... but I know I have to at least have a double mx and may consider ovaries.  I don't know why some of you have gotten hysterectomies instead of just ovaries done.  

Godsgirl

I was 42 when dx on 10-31-05, TN, grade3 9/9, stage 3c, 3 tumors in my breast, which only one could be felt the other 2 were deeper, actually one was right behind my nipple(pagets). They stopped counting after 7pos nodes & just cleaned me out. PET CT revealed more tumors under my collar bone. I was told that they would hit me hard & try to keep me around for as long as they could but that I would die. I'm caucasian by the way, with a lil asian & who knows maybe some African American in my ancestory.  We have no breast cancer in my family, but plenty of other kinds on my father's side. I'm here & I've been called a fluke, miracle...I will be having my 5yr PET CT this month. Please pray for me! If I pass this all I have to worry about is all the effects that the chemo, radiation, scans...have done to me. :-)

Godsgirl

Oh my BRCA1 was neg. but my BRCA2 was iffy at first, but a yr later was told enough research had been done to see that the abnormalities which had showed up were not cancer assoc. If I remember correctly, if my BRCA2 was positive it wasn't as bad as if the BRCA1 had been. I definitely remember them saying that my male children would be more effected by a pos. on BRCA2. 

I breastfed all 3 of my children for a year to year in a halve.

sylviaexmouthuk

I was just wondering what has happened to Cuda Shuda and other older women that were posting on this site. This thread has been silent for too long. I would also like to hear from newly diagnosed older women to find out whether older women are still considered  to be not typical.

Sylvia

mitymuffin

Sylvia, I'm one of the "not typicals", that is I'm older, was a vegetarian, normal weight, and an avid exerciser with no history of BC in the family. But....here I am.

sylviaexmouthuk

Hello Mitymuffin

I was interested to know that you are one of the older ones and thus defined as not typical. Like you, I have been a vegetarian, but I now eat some fish, but do not touch meat or dairy products. I have always been tall and slim and very active. My maternal grandmother had breast cancer with metastases and died of it, but she was 70. I was told that this meant that I would not be one of those with hereditary cancer because my grandmother was too old and, at 63, when I was diagnosed, I was told that I was too old to have hereditary BC and thus did not qualify for genetic testing. I think that if you are 50 or over you are probably counted as not typical. On the other threads for TNBC there does seem to be a lot of younger women. It would be interesting to know what percentage of TNBCs are over 50.

Wishing you all the best.

Sylvia