Calling all TNs

bak94

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.

Suze35

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!

Teka

Suze35,

I didn't take AC+T with Avastin along with radiation.   However, I did just take Avastin with radiation.

Sugar77

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.

katfinn

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.

Titan

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.

redgrldj

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..

Suze35

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.

Titan

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...

Suze35

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!!

blondelawyer

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!

TiffanyF4

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!!!

bak94

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.

katfinn

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!

Suze35

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 :-).

MBJ

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!

blondelawyer

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.  

Anonymous

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...

Teka

Hi,

I had a fun day watching my daughter paint my favorite early spring flower "Snow-Glories" on a ceiling tile at the Cancer Center.  She enjoyed volunteering with other artists in the community for BC awareness and find a cure.   

katfinn

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.

kyroheal

Hey Everyone,

I have a question. I had a lumpectomy on May 9th. They got clear margins and there was no lymph node involvement. I will probably be starting chemo this month. The smallest margin was 0.45mm on the posterior side (closer to chest wall). The surgeon didn't seem too worried about this and said I'll just get radiation (which will probably be after chemo). SHould I be worried about this? If there are cells there wouldn't they grow by the time I do radiation? I just don't know if I should insist for more surgery (although I dont think he can go back in because it was close to the fascia/muscle lining).

Any thoughts?

Sandy

MBJ

Hi Sandy,

My BS cut into the chest wall so I could avoid having radiation in order to get the additional clearance--I had no lymph node involvement.  My BS was an onco-plastic surgeon so he is better skilled then many, so I don't know if a regular BS can do this and I also don't know if they can go back in.  I would get a 2nd or 3rd opinion.

MBJ

Heidi:   LOL!!!  I hate and despise her, but maybe that is what she is aiming for-getting a rise out of people.

Teka:  That's just lovely!

Suze35

Heidi - yup, that's her. Also known as "mindovermatter". Her blog is just downright insulting to BCO members, and I think she posts to get material for it. Lol, crazy-glue!!



Sandy - I'm sorry, I don't have any advice. The only positive from my path report was very clear margins. But I agree with MBJ, get another opinion. A fresh set of eyes never hurts!




Teka - how beautiful. And so lovely of your daughter to do this.



Saw "X-Men First Class" tonight. I used to collect the original comic series, have several friends who owned comic book stores. I loved some parts of it, but the fangirl in me was disappointed in how they changed the backstory. Am I alone in my geek-ness, lol?

blondelawyer

kyroheal:  I would also get a second opinion.  My BS wants to get at least 1 cm margins.  I'm doing neoadjuvant chemo in order to shrink the tumor to make this even possible.  Good luck!

Teka

kyroheal,

One of my margins was 0.3cm.   0.3cm = 3mm   0.45mm = .045cm

I didn't have further surgery.

Some BS consider less than 1mm a clear margin. 

katfinn

kyroheal - I have a similar situation where the surgeon only had about 1mm on that side up against the pectoral muscle.  At first he said that he might want to go back in to get more but then he conferred with another surgeon and decided that the radiation would take care of it. 

I to worry that all of this time between the surgery and radiation (more than 4 months due to chemo in between) could mean that something is growing there.  He tells me that the radiation would get anything left there but that this is still considered a "clear margin" (just not as much of a margin as they like to get). 

MBJ - Will there be any complications with your reconstruction due to the loss of any muscle tissue (from the surgeon going in there)?  My surgeon seemed to be concerned about that and also said that the muscle acts as a natural barrier to the cancer (although I question that).  I have no idea what an Aloderm Sling is but did your reconstruction go well?

Teka

Hi,

My daughter is loving all the thumbs up.   Thank You!

MBJ

katfin:  My MRI showed that my tumor was starting to grow towards the chest wall prior to chemo shrinking it so I could have surgery.  I haven't had any repercussions from this surgery and I was quite surprised that I didn't need to have radiation.  He cleared everything by 1 mm or more.  The Alloderm Sling was something I learned about here while researching reconstruction.  Because we no longer have breast tissue after an MX, they use sterilized and processed sheets of cadavar skin to form a sling to hold the implant in place.  It sounds really gross but it gives a very natural look and there are less chances of failure or the implant moving with this type of procedure.  My PS always uses it for recon and I was specifically looking for a surgeon who did this, as it is a fairly new procedure with superior results.

bak94

MBJ. is the implant still under the muscle? Did you have to do tissue expanders?