Calling all TNs
Comments
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Bagawk!!!
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Painting..were you in a "foul" (fowl) mood before you saw Heidi's cartoon? HA HA
mwilliams (good name by the way)...I had a 1.8 cm tumor..and I'm still here.
Heidi has alot of info to offer...gaining knowledge of TN and using common sense is the best way to handle the BC diagnosis...when i was first diagnosed I used to practically walk around with a bag of spinach in my hand..ate it like potato chips..but no more..yes..I still eat it (I like it).but everything in moderation..realize that nothing your wife DID caused her cancer...yes there are some thing to hopefully ward off a reoccurence...I like eating better and exercising because it makes ME feel better..if it is helping with a reoccurence..that would be awesome also.
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Question: how do you know if you are rec'ing the correct chemo. Is your tumor tested or is an educated guess being made?
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Hey all! I hope everyone had a great 4th of July :-).
mwilliams - welcome, although I am so sorry you and your wife have to be here. You are a great husband to be doing this, and a great help to your wife I am sure! Heidi did a great job answering your questions, I'll just add my own experience.
The 1.8 node - my initial nodes were pretty big, in the 3-4 cm range. The nodes I had removed in my second surgery were smaller - under 1 cm. I did have extranodal extension (cancer on the outside of the node), but that is specific to me - I have seen plenty of women with really large nodes (> 3cm) and no extranodal extension. Was this on your wife's path report? It should say if this was noted - if not, that's good.
I would push for a PET over an MRI. These scans are "nose to knees" and when done in conjunction with a CT as they usually are, can find stuff as small as around 8mm. All scans can produce false positives, however, so be prepared for that. And surgical changes can show up as suspicious as well.
TN does typically respond well to chemo - some women see their tumors disintegrate to nothing! I would guess chemo works on smaller stuff better in general - less cancer to have to destroy, less time for the cancer to figure it out. At this point, the chemo your wife will have is to get to those little cells floating around. As for reoccurence, doctors just don't know why. Some suspect cancer stem cells are immune to the chemo, and can set up shop. It could also be the immune system kicks back in when the tumor load is gone and can clean up the cells as it normally does, delaying/preventing mets. I wish we had an answer!
Your wife's cancer is not metastatic, and the high grade is very common. I had a 9 on the scale myself.
I still fall asleep as you do - one day, I'm feeling like I can beat anything, the next, well, I'm planning my family's life without me. It sucks, but it does get better, even when things seem so dismal. Hang in there.
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I hit post before I finished, lol.
painting - what lovely pictures! So whimsical
.Kimberly - welcome! Everyone has such a different experience on chemo... I had a rougher time with AC than Taxol, but it was manageable. I was vigilant in getting fluids - I scheduled a time to get IV fluids a day after every treatment. I also found days 4-8 the worst - I felt "gutted," like I was literally starving, but I couldn't eat. That was when my WBCs were at their worst. Once they rebounded, I did better. If you check out the "Chemotherapy" section, you can join a group going through it at the same time, and you'll get a great idea of what to expect!
MBJ - lmfao. I love the chickens...bwak!!
Fighter - right now, chemo is an assumption, at least it was for me. I know that the trend is *starting* to go towards testing for chemo-sensitivity, especially for TNs, and I think that is going to make a huge difference in survival benefit! My next round of chemo will be two agents that my cancer have never seen before - so we are hoping they are more useful since it figured out the platins and taxanes at the end.
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I'm wrapping up radiation on Thursday, yay!!!!, and starting chemo on Monday, booo!!! I'm happy to say that both my supraclavicular nodes are no longer palpable. My MO wants me to get a PET this month, but I'm going to push it off to next month, I'm sick of scans, lol.
On a positive note - I figured out my headaches, sort of. I dropped ALL my supplements, and have only been taking my nightime Ativan dose. No more headaches. So I think it is the melatonin. I am going to add in my Vitamin D (lower dose of 2000), then add in a lower melatonin dose and see what happens. I really don't want to stop taking it, I find it very helpful.
So I will probably be in lurk mode for awhile now, as I am expecting the effects of the chemo to be difficult. I will check in when I can, I promise.
In the meantime, I'm taking a last "feeling good" trip to NYC with my DH while the in-laws watch the kids. I plan to eat, drink, and shop.
Take care everyone - I'll be reading, and will try and post when I'm up to it.
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Suze- I hope whatever cocktail your getting kicks ass and that the SEs are manageable. Maybe when you are finished with treatment we can form a support group for Ativan addicts!! HA!! I keep saying I'm going to wean myself off, but still take one every night. I always have an excuse! Have a wonderful trip to NYC and don't deny yourself anything!!! Will be thinking about you!
Tiffany
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Suze- Have a great week-end! I wish you the best with your chemo. Hope the SE will be minimal...
Big Hugs. XX
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Fighter: There are a couple companies that do testing but it has to be done at the same time as your biopsy. They take a fresh sample and cut it up and see which chemo it works with best. I know there is one in Newport Beach or Costa Mesa. It costs about $3500 and I don't think it's covered by insurance.
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Triple-Negative Breast Cancer With Brain Metastases: A Comparison Between Basal-Like and Non-Basal-Like Biological Subtypes
J Neurooncol. 2011 Jun 9;[Epub Ahead of Print], A Niwińska, W Olszewski, M Murawska, K Pogoda
This clinical study examined molecular subtypes in an attempt to identify predictors of outcome in patients with triple-negative breast cancer and brain metastases, but found that differentiating basal markers did not influence survival.
TAKE-HOME MESSAGEThis clinical study examined molecular subtypes in an attempt to identify predictors of outcome in patients with triple-negative breast cancer and brain metastases, but found that differentiating basal markers did not influence survival.AbstractThe aim of this study was to divide the group of triple-negative breast cancer patients with brain metastases into basal-like and non-basal-like biological subtypes in order to compare clinical features and survival rates in those two groups. A comprehensive analysis of 111 consecutive triple-negative breast cancer patients with brain metastases treated in the years 2003–2009 was performed. In 75 patients, immunohistochemistry was used as a surrogate of microarray in order to evaluate the expression of three basal markers: cytokeratin 5/6 (CK 5/6), EGFR/HER1 and c-KIT. The basal-like (ER/PgR/HER2-negative, CK5/6 positive and/or HER1-positive) and non-basal-like (ER/PgR/HER2-negative, CK5/6-negative, HER1-negative) subsets were selected. Clinical features and survivals were compared in both groups. In the group of 111 triple-negative breast cancer patients, median DFS, OS and survival from brain metastases were 20, 29 and 4 months, respectively. In 75 patients who were evaluable for basal markers, median DFS, OS and survival from brain metastases were 18, 26 and 3.2 months, respectively. In the basal-like subtype, the survival rates were 15, 26 and 3 months, respectively, and in the non-basal-like subtypes, they were 20, 30 and 2.8 months, respectively. No statistically significant differences in survivals were detected between the basal-like and non-basal-like biological subtypes. Factors influencing survival from brain metastases were: Karnofsky performance status (KPS), the status of extracranial disease and age. Biological markers differentiating triple-negative group into basal-like and non-basal-like subtype (CK 5/6, HER1, c-KIT) had no influence on survival. In patients with triple-negative breast cancer and brain metastases, well-known clinical, but not molecular, features correlated with survival.
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Inmate- I don't know if anyone has addressed your question as to have one or both. I will admit, I don't know if I am BRAC+ or not due to insurance questions at the time. But I will say I had 4 doctors recommend having both. I did have lymphnode involvement and my Oc said that I would have to have yearly breast MRI's with mamamograms every 6 months and if they saw anything questionalble I would be sent off for a biopsy with no questions asked. They also gave me a 70% chance that it would occur in the unaffected breast. Then I was told to that it is hard to match the natural breast during reconstruction. I won't say that I don't wish some days that I kept one, but I am glad I don't have to be wondering when and what if because I kept it. I hope this has helped and not made things worse. Take care.
Mwilliams- you are doing a great service for your wife. It is not good for her to read too much during this time. I think it scares much more than it needs to. I would push for a PET scan also it helps a little to know what is going on and where. I had both MRI and Pet and got more info from the PET. I had a large palpable lymph node and 3 out of 12 positive. I am sorry to say I don't know all of the measurements, but the docs are pleased with the out come of it all. I did not have to have radiation either since they removed all the lymphnodes during surgery. But all onc. are different. Take care!!!
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Hi I just saw this...don't come back to the forums as much as I should. But I'm a triple negative, diagnosed February 2003, IDC,2.5 cm, Stage II, 0/0 nodes. 4 a/c and 4 taxol, bmx and reconstruction. They made it sound like triple neg was a death sentence and I was scared beyond belief, but 8. 5 years later here I am!
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Thank you Maywin for your post. And congrats on your 81/2 years....I just love stories like yours.
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Thank you Maywin and congrats! People like you keep me positive!
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Hi maywin! Thanks for your post! May I ask you how old you were when you were diagnosed?
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Hi all,
My daughter is in this forum and was writing for me....
I was diagnosed in Sept.2009 TNBC, had lumpectomy after dose dense chemo, 33 radiation.
After 3 months of finishing had a PET CT which was clear, mammo, tumor markers.
Now i will have my 2nd yearly exam and trying to decide if i will have the PET CT again.
Would like to know what exams are you having. MRI or PET ?
My surgeon insists that there is no need for PET and my oncologist recommends that for the first 3 years it is better to have a PET CT.The thing is that everything seems fine and don't know if there i a reason for an exposure to radiation.
Would like to hear your personal experience with follow up.
Thank you
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Got interesting news over the holidays at a family get-together. I've always believed I was the first and only BC on either side of my family, but when I mentioned that, one of my cousins piped up with, "No, you aren't; great-grandma Carrie died of BC back in 1964." (edit - on the paternal side) My jaw dropped, as I'd always thought she'd died of a stroke. No one in my family had ever been aware of that, either, but that cousin's entire family knew, and just assumed we did, too. They said because she was in her 90s, it wasn't treated, as they didn't think she could even survive surgery.
And if that wasn't enough of a kicker, they also informed me that my Dad's cousin, which my side of the family have very little contact with, had also been diagnosed with BC about the same time I was, had finished treatment and seemed to be fine now (whatever that means).
So... is this significant enough to warrant BRCA testing? I see my oncologist next month, and I'll definitely mention it to him then, but don't know what to think about this.
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hi go for Petscan. it picks up more accurately and for the entire body
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riley702: I don't think those instances would warrant BRCA testing here, but of course it may be different where you are. As we know BC is not uncommon in women beyond age 50, and if there are a lot of women relatives, incidence may be due to chance only. Only 5-10% of BC is considered hereditary; two thirds of that attributable to BRCA genes. (I did have testing due to an aunt and sister with BC)
FYI, guidelines here are:
multiple cases of breast or ovarian cancer on same side of the family, especially
- in closely related relatives,
- in more than 1 generation, and
- when breast cancer is diagnosed before age 50;
a family member with breast cancer diagnosed before age 35;
a family member with both breast and ovarian cancers;
an Ashkenazic Jewish heritage, particularly with relatives with breast or ovarian cancer;
a family member with primary cancer in both breasts, especially if diagnosed before age 50;
a family member with ovarian cancer;
a family history of male breast cancer; or
a family member with an identified BRCA1 or BRCA2 mutation.
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Thanks, Luah. It was just a little freaky finding out your family history isn't what you always thought it was.
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riley: Understand completely... especially when the skeletons come out of the closet belatedly. BTW, I corrected post above on hereditary BC incidence to 5-10% (not 50-10%
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I had a routine mamogram in December 2010 and it showed microcalcifications. I had a stereotactic biopsy and lumpectomy as the area turned out to be intermediate to high grade DCIS. The margins were not clean. An MRI was done and this sneaky tumor was found-showing a "washout" which I knew had something to do with the area having a blood supply. I had a bilateral mastectomy with immediate reconstruction 20th March. The area was Invasive Ductal Carcinoma, Grade 3, Triple Negative (Sentinel was negative) which floored me for sure! I was in shock it was Triple Negative. I started chemo 13 April with Taxotere and Cytoxan X6. I have finished 5 just today. I am happy it was caught as early as it was. I am happy I am stage 1 due to nothing being found in the Sentinel Node and the size. I am worried that it had a blood supply. I cannot get it out of my mind this Triple Negative. In the wee hours of the morning it creeps into my mind that a bit of it can be in me somewhere, just waiting. Will I ever get over this feeling? I To put it bluntly, I am afraid. For those of you reading this I want you to know how much I admire you, your strength, courage, compassion and sheer guts. I mean that from the bottom of my heart and though I may not post much, I follow you all very closely. Joan
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Hang in there, Joan. The waiting for the "other show to drop" is part of everyday life. Some days I feel so good that I could climb a mountain and somedays I feel like I should be getting my affairs in order. I go back and forth. But there are more good days than bad. Check ups and/or scans always send me into a nervous frenzy. Do what you can to get through TX, take good care of yourself. I just finished reading a book called Dancing in Limbo. It was about how cancer pts feel after treatment is finished and it is time to get on with their life. It was very helpful to me.
Good luck...youre almost done!
Navy
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Joan, I'm there with you now. I don't know that I will ever be able to relax completely and not think about mets suddenly popping up. Ignorance was bliss at first - I didn't really understand what TN was and my onc certainly didn't tell me! I found out here and then got very afraid. I signed up for a clinical drug trial before surgery, decided on BMX and when they said it could go either way whether I should have radiation, I took it. I know some think it's overkill, but I'm trying to kill the fear, too. And if it comes back, anyway, I know I did everything I could to stop it. But I also understand it's different for everyone and we just have to muddle through doing what we think is best. Good luck!
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Ok..about this Triple Negative stuff..hmm..I'm trying to think of the best thing to say..ok...first of all..it is NOT a death sentence..yes..to some it is..but maybe, probably... NOT YOU!...
Yeah..we have tn..chances are good that you will beat it...very good..
I dunno..hang in there ladies and don't freak out too much..easier said than done I know...it's hard to put it in the back of your mind when you are first diagnosed and going through treatment..but seriously..as you move on (and you will)..it does recede to the back of your mind...really.
I remember so much the anxiety, the total FREAKING OUT....about having breast cancer and being tn....it pretty much encompassed my whole life...but now..it doesn't encompass my whole life...yes a part..but I can sleep at night..I have alot of fun..I don't think about it like I did...
You guys will get there too...I'm 28 months out on 7/20 (yes..I still keep track)...but really, really, really...it does get better...ok???
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Titan - you are such a voice of reason, thank you. Some days it is hard for me to even breathe, being such a late stage, I just think "this is it." I push forward as best I can.
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On a funny note, I got my hair colored today, figured what the heck since I'm going to lose it again anyway. I told my guy, surprise me! Lol, I have red and dark purple hair!! I should have known, he's quite the drag queen lolol. But I love the pixie cut, and I'm going to rock my grannie look for all it's worth in NYC. Or wear my wig, heh.
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Suze: You must share a picture of you with your new hair in your new car!!!
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Oh Suze..I know you do...YOU have helped so many of us on here (including me)...
Have fun in NYC!
MJB...haven't told you but I love your new pic....your DH is hot!
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My new kitty, Lucy:
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