Calling all TNs
Comments
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blondelawyer: I am sorry to hear your tumor didn't respond to Taxol, but like others have said, it is good to find out earlier. Hoping AC will work well for you.
Stupidboob: I know what you mean about not trusting mammograms. Mine did not show up on a mammogram. But now I go to a different place that my BS highly recommends. Also I will get MRI's.
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Bolonde lawyer. I read the study about Taxol first and wondered why it wasn't offered to me. If its any help, AC knocked my 7cm tumor right out after only 3 treatments. I could actually feel it working, there was some mild pain. I'm sure this will fix you right up. It's good they are monitoring you so well. Neo adjuvant chemo can be a really good thing. Good Luck.
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No..I really don't trust mammograms.....but I do get a great breast exam every 3 months..I think my tumor wasn't found because of my very dense breasts..but that is another topic..
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MBJ- interesting thoughts on the joint pain; I'll keep it in mind.
Pompeed/Mindovermatter/Patzee--- what an *sshole. But then again, what can you expect from an individual with multiple personalities? I thought from the getgo that she was..... weird. I stopped following her post months ago though, so I didn't realize she'd.... morphed.
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swiftbird - my onc uses the date that all surgery/treatment was finished. I had surgery Jan 2010 and chemo ended May 2010, so my date is May 20, 2010.
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Anyone else out there having very little follow up care? This is primarily by my choice. I see the once every 6 months now, whew. I hated going every 3! I've declined tumor markers and he says he's fine with that since they're not terribly accurate. So all they do is CBC bloodwork on me, we talk about how I'm doing, and that's it. I know if I had any symptom he'd immediately suggest a scan but since I don't, I'm more than happy to avoid the anxiety of a PET or MRI - those machines make me cry just looking at them!
I had a double mastectomy with reconstruction, so no mammos for me either. I've heard of people having ultrasounds to check on reconstructed breasts, but again, I don't want to submit myself to the anxiety and I have no need.
Maybe I'm burying my head in the sand. But I don't see the point in getting a bazillion tests unless something feels MAJORLY wrong - and in that case, I don't even know how much it would be worth it, with no treatments for Stage IV TN beasides chemo, which I do not think I could do again.
This month I am officially 2 and a half years out from diagnosis/surgery. Sometimes it seems like it all happened to another person... and in a way I guess it did.
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OMG, Heidi, she had 3 different names she was posting under???? Maybe she just went off the deep end. I don't recal her posts here to be crazy but then I don't recal her posts at all and I wasn't following this particular thread either. WTC crazies!!!
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I should just stay on this thread only. I posted something on the same thread as Titan, and also got my post deleted. I did not use any cuss words. I just pointed out some disturbing things that were on that person's blog.
This thread is the best. Hope everyone has a great weekend.
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Thank you Titan! I have a wig, hate it! Only wear it to work, it the dew rag for me!!! I have all colors!
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Hi ladies, wow some interesting stuff going on, cant beleive titan got deleted lol you are so positve and encourageing this lady must have really got your panties in a knot lol I have read some of those threads where everyone fights just kind of makes me giggle the ingnorance of some.
Anyhow I am day one out of treatment 5, so far just headache and some cramping but I know from past it will get worse before better but hey now I can officailly say I more to go
sorry to tired to reply to all just giving hugs
Kymn
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Kymn - Yay!! only one more, that is so great!!!
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Kymn: One more to go will be done before you know it! Big hugs to you!!!
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Minxie, congrats on 2 and a half years out! I think you should do what you are comfortable with. If you do have symptoms or pains that last more than 2 weeks, please tell your onc. WIth my first breast cancer 8/9 years agoI had very little followup after the first 2 years, my onc. retired and I was followed by my primary physician, and I was stage 2b and triple negative. It was a mammo that found my cancer in the other breast, a new primary , not recurrence. This time around my new doc is scan crazy, but I am stage 3 this time so it is understandable. I think my mammo a year ago missed my lump, as I have dense tisue. I should have fought the insurance company for more mri's, which they did cover no problem for the first few years and then it was a struggle to get them to pay.
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Kimn - one more to go, yay! You can do this!
Lynn - don't feel bad. That poster is a real piece of work. Her blog was just the most insulting thing.
Minxie - great milestone!! And you are right, we are different people, come what may. BETTER people.
Frustrating day, I feel like a yo-yo. RO doesn't want to mix chemo/Avastin with radiation, so doesn't want me to start until after Juy 7th. He said my MO agreed with that. I was NOT happy, so called my MO. She was shocked - thought it would only be a one-week delay, not 3+. She's not comfortable waiting either, so she's going to consult with other ROs and talk to mine some more. So I have no idea when I'm back on chemo. ARGHHHH!0 -
Suze - hi, when I was going through treatment I asked about doing chemo with rads at the same time and I was told it couldn't be done with my regimen. I know a woman who did her's at the same time but it was 16 years ago and the chemo regimen she was on back then was okay to do together. From what I understand, it can make certain chemo drugs very toxic. Hopefully they'll get it sorted out first thing next week. Take care.
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Hi fellow Triple Negative ladies. Can I ask if any of you are getting Cytoxin and Taxotere? It seems like most of you are receiving ACT or Avastin. I went with 4 cycles of CT and now that my last treatment is near, I worry that I should have had the more aggressive AC. I also wonder if I should consider a mastectomy and skip the radiation.
Mine was not caught on a Mammogram either but via Ultrasound (dense breasts). I'm only stage 1A, no lymph nodes but grade 2/3. They didn't think I was a TN until they did the FISH test on my tumor as the HER2 status was not clear. (but definitely ER and PR negative from the beginning). My docs don't really think I need to consider a mastectomy but my surgeon said he would support it if I don't think I can live with the worry of recurrence. They say I'm so "gray" that there is no simple answer to the mastectomy question.
Any help is appreciated. I know that most of you have higher stages and tougher treatment than me. I pray that you all kick this thing and continue to stay healthy.
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Kymn! I think it was Suze that had her panties in a knot..ha ha...one more chemo hey?..Yes!..You are going to make it through..good stuff...
I still see my onc every 3 months...I think that when I see him again in August that I may go to 6 months.. that will be 2 years from the end of chemo.IF I get to do this...I'm thinking that maybe he is comfortable with not seeing me for 6 months...maybe a good sign?
Yes..we are all different than we were before BC...but maybe the *bbIItch** in me is coming back a little since I've started yelling/swearing at a poster on here.
And Kymn..you were correct when you mentioned reading some of these threads and giggling.
Don't tell anyone..because I probably shouldn't even say this but sometimes I read them for the pure entertainment value..oops.prolly shouldn't have said that.
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Saw my ONC today.. Things are looking good.. I go for CT and Bone Scans sometime in July and then see him again in August... It looks like the Chemo did it's job...
Sometimes I can't believe I am stage 4... Kinda freaks you out.. then other days you are like of well, I'll just keep fighting the crappy fight and liveing my life anyway I can..
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Teka - thats interesting, as the Avastin seems to be my ROs sticking point. He's fine with starting at least Xeloda. He's worried about rebound effect and wound healing. But I have very little skin damage, and the last 3 weeks are one small field, so I'm not sure it is as big a concern.
Sugar - thanks for the input. I don't want to put my health in danger, that's for sure. Well anymore than it is lol.
I feel like with the new node, I should be doing chemo rather than radiation. But we've started, and it is kind of like antibiotics - you don't want to stop mid-treatment. And my RO was like, your scans were clear, you'll be fine waiting. In fact, he's very optimistic overall. But my gut is saying chemo, and I ignored this feeling once before to my detriment...ugh. I may have to drop radiation to start chemo, I don't want to have to make this choice.0 -
Oh Suze..agree with you..I wanted to have the treatments all at the same time..was freaking during chemo that not having rads yet that BC cells were leaking out of my breast...
The things we we have to freak out about...
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Titan - lol, yea, she chaps my a$$! I like to read for entertainment value also, but this woman just irritates the crap outta me!
redgrldj - I am SO glad the chemo is doing it's job, yay! I'm not Stage IV, but close, and still wake up every day in shock. It sucks, I want a rewind button!!0 -
Katfinn: I am currently thinking a lot about the lumpectomy vs. mastectomy issue and I'm definitely leaning toward mastectomy (and bilateral at that). My tumor is large and I'm stage 2b (as far as we can tell). What I have heard is that survival is the same for lump + rads and mastectomy, but that the recurrence rate is slightly different. I'm afraid of recurrence, especially with being triple negative. I think that you really just need to do what feels right for you. Good luck with your decision!
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I had TC x4 and a bmx. I also had 40 rads. I feel confident in the treatment protocol I was given. My best advise would be to voice your concerns to your oncologist. I am sure he or she can explain why your treatment plan was chosen for you. Wishing you well!!!
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Katfin, have you had genetic testing? I wish I had with my first go around and then I would have probably done bmx. I did lumpectomy with radiation 8ish years ago and now have a new primary in my opposite breast, maybe it could have been avoided if I had bmx the first time. I am brca1 positive and that greatly increased my chances of a new primary. It sucks doing this a second time, plus I was diagnosed at a later stage this time.
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bkj66- When you ask about genetic testing, do you mean the Brca testing? My onc says that it wouldn't be covered since I don't have any family history. Plus I've heard from several women who were had negative results from the test but it "is" in their family. The docs admit that there are still several "unknown" types of breast cancer out there.
8 years and then you find a new BC in the other breast??? Ugh! Why didn't they find it sooner? Do they just do mammograms each year? I think we need at least an ultrasound since most of our tumors were not detected with mammograms (the dense breast thing).
I really wasn't leaning towards a mastectomy as I heard that the cancer can really come back anywhere but now??? I'm sure there are several other stories like yours. Thanks for sharing and good luck. So, your new primary is also a TN I see (or was the first one something else?). Are you doing a BMX now? So sorry!
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katfinn - I had zero family history of ANY cancer, but because of my age (41) and TN status, my insurance company paid for it. Maybe call your company and ask? I turned out negative, but I do think it is important information to have.
It seems dense breasts is a very common theme with TNs :-(. Mine were ridiculous, and I just had no confidence in mammograms anymore. I will say that my recovery from the BMX was much easier than I expected, and my BS did a great job. I put off reconstruction for now, but maybe in a year or so if things continue to go well.
Second day of rain here in the NE, yay! We needed this so much. And I'm so excited - my fruit trees are fruiting! I put them in last year, and I have apples and pears coming!! Along with my blueberries, but we've had those awhile. I love gardening, I can sit outside just examining my plants for hours. I have to figure out how to post some pictures so I can show off my fruit and veggies :-).0 -
Katfin: I had 6 rounds of TC and I was not given a choice for lumpectomy or MX although they asked if I wanted to keep my other breast and I decided yes. Knowing what I know now, I don't think I would ever have a lumpectomy. Women with large breasts do much better with one. It's such an individual choice and I felt very strongly, after I was given the facts, about which direction I had to go. My first BS told me I was stage 3 and wanted to do radiation, MX & chemo my chosen BS said I was stage 2 and needed only chemo & an MX. I had no node involvement.
Suze: That really sucks and I hope they get it all sorted out! Argh!!!
rdgrldj: I think for many of us it's just finding the right chemo coctail and I am glad you have had such a great response!
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I also have no family history of breast cancer, but my insurance paid for the genetic testing with no fighting because I am 33 and TN. I also am BRCA negative. One thing that I didn't know about until talking to the genetic counselor was that BRCA positive can have implication for ovarian cancer too.
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Suze/Titan... OK, who are we talking about here? Pomped/Patzee? If so, I agree, she is damn annoying. Makes me want to put Crazy Glue on her toilet seat...
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Beautiful! Someone told me that they do this so we have something to look at when we are getting our radiation. I would love to look at your daughter's beautiful tile.
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