Calling all TNs
Comments
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@ Titan, true...LOL
Mitymuffin-I get nervous when the word DOCTOR and TEST are mentioned in the same sentence. YES everything hurts when it is close to test time. Perhaps it is nerves. All shall be well.
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Sugar: So happy you enjoyed your trip! Hoping you post some beautiful pictures soon.
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Hi everybody!
I just wanted to post to celebrate my 3 year anniversary! I'm soooo thrilled to be at 3 years!
Take care!
Lorrie
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Morgan: Wow, Congratulations! That is just awesome!!!
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congrats. Morgan...... wooooooooooooohoooooooooooo
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Hi All - haven't checked in for a while - having the last dose of the trial chemo in about an hour and am feeling oddly anxious....dreading the break between chemo and my surgery on the 9th of May as I am fully expecting to obsess constantly about whether or not it's growing back while waiting for surgery. Then, the thought of starting more chemo that I know will be harder than this trial is a little intimidating. But, glad to be reaching at least the first milestone.
MBJ- so glad to read that your lump was just fat - huge relief.
Suze35 - hope you are recovering quickly and can get on to the next step soon.
Sugar - my daughter was in DC same time as you with her 8th grade class - they had a great time and she said it was beautiful.
Mitymuffin - hang in there - I'm so glad you'll get results right away.
OK - I'm off to the last dose!
dlcw
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Sugar - I'm glad you had a great time, it sounds like it was lovely!
Mitymuffin - I'm not there yet, but I do know stress can cause our bodies to act out on us. I'm sure everything is fine
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Morgan - congrats!!!
dclw - boy, do I understand that stress of waiting. But my situation is pretty rare, and I'm sure your surgery is going to go great. The AC/T wasn't all THAT bad for me. I didn't have too many nasty side effects, I'm hoping the same goes for you.
I'm still pretty sore, worse than the last surgery. But I'm managing. I have my consult at Dana Farber May 5th, so we'll see if I choose that route...0 -
dlcw: I had my chemo 1 x every 3 weeks, so waiting 3 weeks for surgery is to allow your body to recuperate from chemo but not enough time for anything new to happen-at least this was how I interpreted this. You should be fine--chemo makes the tumors more manageable and helps to clear the margins. Big hugs and wishing you few SE's on your last treatment!
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Went to a BC convention yesterday hosted by our state organization. Found out I am eligible for BRCA testing due to my TN status due to some research grant (or something like that). Anyway, it will take a long time to get the results (@ a year they said) but at least I'll know for my kid's sake. I'll let you know more details as I have them.. waiting for a call back on the appointment now.
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Morgan, Congratulations!
Thank you all for the words of support! It helps.
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Yay..Lorrie! I'm 11 months behind you..!
Heidi...about the Brac testing..think about it first ok? Maybe your kids don't WANT to know.. ..My SIL is BRAC 2...one of her kids had the test and yes..she has the gene..my SIL's son refused to take the test because he thinks it may possible hurt him in possible employment opportunities (even though it is against the law to discriminate but how do you really know for sure?)
My daughter and I have discussed this possibility..though I haven't had the test...I guess if I had it and proved positive I probably would have my ovaries removed...as far as my DD goes...what is she to do? I have already told her to exam her breasts..she will have a mammo at age 30 (or sooner)...she is already being watched very closely...I don't know..is it a GOOD thing to know this crap..or just be vigilant? Do you you think if you really knew there was a higher chance of cancer it would hinder just living your life? All of us having cancer in the first place makes our children more susceptible anyway..right? I hate that..absolutely hate that.
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Heidi: I am wondering why you would have to wait a year for your results? I got mine in a couple of weeks.
Titan: I understand that some people would not want to know about their BRCA status, but having gone through triple negative, I would want to know. If you're BRCA 1 positive, you know you are at higher risk for triple negative BC. And we all know how fast it can develop, it would probably be a good idea to get MRI's in addition to mammograms. I think there's a lot you can do to catch things early, once you know you are at higher risk, and we all know that is the key.
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First of all, my kids (2 sons) are adults. Second, I feel it is the *responsible* thing to do. (I do not believe in sticking my head in the sand) Third, it creates immediate opportunity for MRI monitoring should I wish to have it.
So, because I am TN and a realist, I feel getting tested is a realistic and responsible thing to do. It would also be furthering the knowledge and understanding of TNBC in future patients, as it is a research based opportunity (and therefore the reason the results will take longer to get). The testing is really for that reason, *not* for my own personal edification. That's why it would be free and the findings longer in coming.
I am also aware of some of the issues surrounding BRCA results wrt insurance, employment, etc. but that is not something I am going to concern myself with now. I had an ooph five years ago for other reasons, so that ship has already sailed.
Consider it my contribution to TNBC research.
Does that make sense?
I'm in bed today. Had 2 medical procedures this week (nerve block for migraine and botox for stiff neck) plus a slight cold. I have to shoot a friend's wedding tomorrow. Today I canceled a nice horseback ride because I'm just feeling a bit achy (and sorry for myself).
Oh to be young and healthy again!
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While I respect everyone's opinions on this issue, I have to say that if I had been given the knowledge earlier in life that this might happen, I would have been far more diligent in screening . . . early mammos and insisting on MRIs. While mine was still caught early (we hope anyway), I would love to have been looking for it and caught it much earlier. I found my almost 2 cm lump a month before my 40th bday - never had a mammo at that point.
I think the fear of it is outweighed by the knowledge that you should be watching more closely than the experts suggest. In fact, the silver lining to this diagnosis for me is that going forward I will be very very carefully watched and, hopefully, any future problems will be caught very early.
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I respectfully agree with lrr4993, from the perspective of someone who didn't catch it early. I spent my life saying I didn't have to worry, cancer didn't run in my family, no one had breast cancer, etc. I still did self exams every so often and had my mammogram, but I was not very vigilant. I never want my daughter to have to go through this, and I did the testing to see if there was more information I could provide for her (and my boys) so they could get better screening down the road.
Heidi - I'm sorry you had to cancel your riding. I hope your head and neck feel better soon and you can get back out there.
I'm a bit of a mess right now. Up and down like crazy. The nodes pulled out on Tuesday were of course malignant, and now I can feel the one above my collarbone - although it is very small, not swollen really. It didn't light up on my PET, so it is either reactive after the surgery, or has a little cancer in it. Either way, it is getting zapped, and I know I'm Stage IIIc regardless. But it just really hit me hard last night when I felt it. I just want some time away from any treatments before I have to deal with this again. I want to get through rads, do my chemo, then have a year to live without it all. The thought of never getting that break just wears me down.
My doctor is going to consult with Sloan Kettering about the next step. She really wants to do Avastin with a regular chemo, but she is also worried about 5 years down the road and leukemia. I told her if it gets me 5+ years, I'll deal with that. At least I have 6 weeks or so to make that decision, as she definitely wants to do radiation first, given the local disease and clean PET scan.
Thanks for listening. I'm sorry to be a downer - stop this ride, I want off!!!0 -
Suze: This is the place for you to get it all out! So don't apologize... it's the whole purpose of this forum. I think everyone will agree we ALL want off this ride! It's hard to get through treatments when the end of the tunnel is so distant that you really can't even see the light. But each tiny step is one step closer to finishing. All of the things you are feeling are completely normal, and I would be shocked if you weren't up and down all over the place! Your PET was clean and that's really good news. Nothing lit up in the lungs or anything... concentrate on that fact. The lymph nodes have been doing a bang up job in my opinion, and remember, that is their primary function. Believe it or not, you ARE moving forward toward the end of the tunnel.0
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suze: I'm so sorry you are having to go through this but I am glad your dr is consulting with Sloan Kettering to see if this is the best route for you. We all want off this train, but here we are. Big hugs to you and know that there are other chemos out there! Big hugs!!
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Suze - sorry you are having a hard time. I know you are ready to just be done and move on. It is all any of us want.
I am curious about your comment regarding luekemia. Is that something specific to Avastin? I don't know much about it. I know there is a small risk of leukemia with chemo, but I have never heard of any doctor considering it to be so signficant that they would question treatment.
On the BRCA/screening issue, you are correct . . . obviously since you agree with me. Ha!
I too have no family history or any reason to have thought this would happen to me. I did the genetic testing at the urging of my surgical oncologist because of my age and a grandmother who died from ovarian cancer - apparently one of the two BRCA genes is also implicated in that type of cancer. I was negative, thankfully, but if I were positive, I would want to know it for me, my sister and her daughter. My sister, who is younger than me, is now getting early mammograms because of my diagnosis, which makes all of us feel better, even though mine is not hereditary. 0 -
Suze35: Your doctor sounds very smart. That's great that she is consulting with Sloan Kettering. I am sorry you can't get off the "roller coaster", that is a good analogy. Your clean PET scan is good news and radiation works well on local disease.
Mitymuffin: Good luck on Monday. I hope you get quick reassurance that all is well.
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While on the subject:
BRCA2 Gene Mutation Linked With Improved Survival in Ovarian Cancer
Elsevier Global Medical News. 2011 Apr 11, S Worcester
ORLANDO (EGMN) - Ovarian cancer patients with BRCA1 or BRCA2 gene mutations have better survival than do those with neither mutation, and those with the BRCA2 mutation have better survival than do those with the BRCA1 mutation, according to the findings of a large, multicenter study.The findings confirm the results of several prior smaller studies showing a survival advantage in mutation carriers vs. nonmutation carriers, and they provide the first direct evidence that BRCA1 and BRCA2 mutations have differing effects on survival, Kelly L. Bolton reported at the annual meeting of the American Association for Cancer Research.She and her colleagues studied 3,531 women with invasive epithelial ovarian cancer who were enrolled in one of 24 studies in the United States, Europe, Israel, and Asia, and for whom survival data were available. They excluded patients who either were known or were likely not to have received platinum-based therapy. Included were 1,178 women with BRCA1, 367 with BRCA2, and 1,986 who were BRCA negative. The 5-year survival was 36% in those with no mutation, 46% of those with the BRCA1 mutation, and 61% of those with the BRCA2 mutation, after adjustment for stage, grade, histology, and age at diagnosis, said Ms. Bolton, a predoctoral fellow at the National Cancer Institute. The difference in survival between the BRCA1 mutation carriers and those with no mutation was modest, although not statistically significant (hazard ratio, 0.84). However, the difference between the BRCA2 mutation carriers and both the noncarriers and the BRCA1 mutation carriers (after adjustment for age at diagnosis) did reach statistical significance (HR, 0.57 and 0.69, respectively). Even after the exclusion of all but high-grade, advanced-stage serous cases, the survival differences persisted, Ms. Bolton reported. A possible explanation for the differences, based on in vitro work and some retrospective trials, may lie in patients' responses to chemotherapy; those with the BRCA2 mutation may have an improved response, but unidentified biological differences among BRCA1 carriers, BRCA2 carriers, and noncarriers could also be driving the association, she said.The BRCA1 and BRCA2 mutation carriers in this study did not differ in regard to tumor stage, grade, or histology. Compared with noncarriers, however, BRCA1 carriers were younger and BRCA2 carriers were older at diagnosis. Furthermore, compared with noncarriers, BRCA1 and BRCA2 carriers were more likely to present with advanced-stage disease, high-grade disease, and serous disease. "The findings don't have any immediate impact on clinical practice, but they do have important implications [for both] clinical prediction and also trial design, particularly for clinical trials," Ms. Bolton said, noting that although germline mutations in the BRCA1 and BRCA2 genes (which are important in DNA damage repair and have distinct yet complementary functions) are rare in the general population, they are present in 10%-15% of those with ovarian cancer. Indeed, the findings - which "may be a very faint silver lining" for mutation carriers with a terrible disease that still has terrible survival - do speak to the possibility that women with these mutations need to be identified in the setting of ovarian cancer, as the presence of mutations will affect thinking about treatment, said Dr. Judy E. Garber, the new AACR president and director of the center for cancer genetics and prevention at the Dana-Farber Cancer Institute, Boston. Dr. Garber moderated a press briefing where Ms. Bolton discussed her findings, Ms. Bolton had no relevant disclosures.0 -
I want to say that I am 63 and too old to be tested except that I am triple neg. and my mom (who is still living) had ovarian cancer. The genetic councellor called today to tell me I was approved for BRCA testing because I am triple negative. I think it is a good thing because I have a daughter.
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Are there age "rules" for being tested? It was never offered to me and I never asked about it.
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gilly- my onc told me I was borderline for testing, and since I had no daughters or BC history there was no need. That was basically OK with me. Wednesday I went to a BC convention and discovered they were actually looking to test more TNs for BRCA gene(s).
So, things appear to have changed due to all the focus on TNBC and, since researchers want more info on it, I figure... why not? I don't expect it to change anything and if it helps create better understanding of the disease then it is a worthwhile endeavor IMO.
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WTF is all that <address> crap in my previous post?
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Heidi - maybe the aliens are putting in secret <address> codes...we haven't heard from them in awhile!
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Sheesh Heidi...wth..I really am starting to believe you do have aliens in your pc.
Suze..yeah..you are going through crap now...I hope you get a break soon..don't you get at least 6 weeks b-4 the next phase of your treatment? ..to let your body rest a little?
Maybe I will have the brac test done...I'll talk to my onc about it at my appt in May..you know what bugs the crap out of me? I dont know how many of you have dense breasts but mine have always been dense...the drs always told me that...so why in the heck didn't I ever get an ultrasound or mammo of my breast instead of or with a mammogram? That bothers me...Women with dense breast should get more of a screening than the ladies who do not...who knows..maybe in August of 09 when I had my mammo..if I would have had a US or mri maybe the cancer would have been DCIS...I know that TN's are fast growing.but really..it had to start somewhere right?..Whether or not I do the test..I definitely going to be on my DD to have an ultrasound or mri..early..if the insurance won't approve it..tough..I will pay for it myself.
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Titan - I completely agree re the MRI for dense breasts. After reading a number of posts here about it, I asked my onco about using them as part of my screening in the future. I had an MRI right after diagnosis that showed an area of dcis that was missed by the mammo. Onco agreed without hesitation, but I don't think she would have ordered it without my asking.
The more I learn, the less I trust mammos.0 -
Hi, Titan! I've been easing back into work. They've opened up a new tower and there's a lot more walking. My feet hurt by the end of the day!
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Just checking quickly before heading out to take wedding photos...
Yes, the gals told me on Wednesday that being TN with dense breasts would *definitely* put me into the MRI screening group not just mammos.
Gotta run!
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Titan & Heidi: Thanks for that info re dense breasts and getting an MRI vs just a mamo. I have a re-check in July and I will push for it.
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