Calling all TNs
Comments
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To Luvingmymom...I'm sorry to hear of her recurrences, and thank you for the updates. Sending healing and strengthening thoughts your way.
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OK - let's try this again, my post went off to never never land.
Sun & Patti - sorry you have to join us but welcome to our group. Let us know if there are any questions we can help you with.
LovinmyMom - thank you so much for keeping us updated. We are all holding your Mom tight in our hearts. I spoke with Michelle this weekend and her spirit is as strong as ever. She wanted me to relay her good wishes to everyone. I told her that everyone is sending her good wishes.
Annie - that sounds like a hell of a couple weeks. I'm glad that the news appears good for your daughter. I hope the rash is cleared up by now? Any luck on getting a better sleeve for your arm? A sleeve that could cause swelling in your upper arm doesn't sound like a good idea.
Aeryno - congrats on finishing chemo!
Karen - any news?
I started my chemo yesterday. I picked the 6 month regimen of CMF, so it will be a long haul. I switched to a local facility for my treatment and I have to say that I'm very pleased with my new MO and the staff in the infusion center. (I actually think it's much better than the big facility I was at.) At this facility there is a nurse triage that will return your call in 1-2 hours, and they return calls promptly. You will all laugh at what I'm pissing and moaning about this chemo. The Cytoxan is oral and is taken for 2 weeks on, 2 weeks off. Because it can cause bladder problems, you have to drink copious fluids and pee frequently. I'm a camel, I don't drink much. This is like torture to me, lol. I also cut my hair today. They told me my hair would only thin with this treatment. (I was told the same thing last time and I lost enough hair for a small pony by my 3 rd treatment). I had them cut my hair so I don't have to style it and pull on the hair. Looks like shit, lol, but hopefully this way it will stay around long enough to get me through the hot weather.
Hope everyone is well?0 -
Haven't been here in a while, so sorry to hear about Michele - sending healing thoughts and prayers.
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*waves hi to Onvacation *
Welcome Wrenn. You're in the right place. I'm sorry you've been going through all this. You are in the right thread. This thread is not as active as it used to be, but the good news is that it is less active because many of the members are off living wonderful lives!
Whether you do a lumpectomy or a mastectomy is a very personal decision with no right or wrong. There is a recent research study that lumpectomy actually has slightly better success rates than mastectomy. (I miss Luv, she is like a walking encyclopedia for these things. If anybody remembers the link for this study, can you post it please?)
Other ladies on here will be better able to answer your double mastectomy question. I don't know where insurance companies stand on paying for mastectomy on a breast that has no evidence of disease? Ladies, any answers in that?
Also be sure to speak to your surgeon about whether there will be radiation or not. They are now sometimes doing radiation after mastectomy depending on the number of positive lymph nodes.
Please don't hesitate to come and ask questions when you need. I also suggest you favorite this thread so you can find it. (I'd never be able to find my way back without my bread crumb trail of bookmarks and favorite listings!)0 -
Hello ladies!
I was diagnosed on July 8 and am triple negative. I have a 1 cm tumor in my right breast and am scheduled for a bilateral mastectomy on Monday, Aug 5. The recurrance numbers scared me and I thought it made more sense to have a matching set of boobs or nonboobs so I'm doing it. I'm also scheduled for an immediate DIEP reconstruction procedure which they won't do if any nodes have cancer. Not knowing until I wake up how much or how little was done to me is a bit stressful. Heck, the whole thing is really freaking me out.
I elected surgery first, both the BS and the oncologist I met only for a second opinion on surgery first vs chemo first said it didn't matter. I liked having surgery behind me when I started chemo.
I will probably be on here alot with questions once surgery is over and I meet with an oncologist about actual specifics and treatments...
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Wrenn – I had a bilateral mx and only had cancer in my left breast. The insurance DID pay for it. The Woman's Health and Cancer Rights Act requires coverage. I hope this helps.
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Oh, that's great! One thing I've learned is that YOU are your best advocate. If your surgeon doesn't like your idea, ask questions. Make sure she explains everything to you so YOU will be comfortable with what is done to YOUR body. I wish you strength and courage for tomorrow and always remember you have support here!
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Hi Wrenn, welcome to the TN thread. Sorry you had to join the club nobody wants to join. You'll get lots of support from the wonderful ladies on this thread. What part of Canada are you from? I'm from Mississauga just outside of Toronto.
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Michele, thinking of you and praying you start to feel better.
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Thanks for the good wishes on the trial. It took a couple of weeks to have the tissue tested last time. The side effects look really bad, right now I feel really well, I don't know if I want to feel poisoned again. The other trial was immunotherapy, no real side effects. This new trial is a pill used for prostate cancer. It's hard to get a good idea of the side effects, from the men's boards - nothing to compare it to.
Annie - so sorry you've had such a worry. So glad the pups survived their garbage raid.
Good thoughts out to our dear Michelle and those of you in treatment.0 -
Wrenn, welcome. I think there is a Vancouver group of ladies under the Canadian Breast Cancer Survivor forum, not sure how active that thread is, but they have planned get-togethers in the past. As you move through treatment, be sure to drop in on the Surgery, Chemo and Rad threads, as applicable. Lots of support there. But this Calling all TNs thread has been my favorite, so visit often and feel free to post questions. As for treatment options, I would encourage you to go in with lot sof questions and an open mind... it's not about having doubts (though it's better to have those before treatment than after), but being properly informed and making sure your choice is the right one for you. Certainly many women choose MX, and many others choose LX (probably more so in Canada), depending on the nature of their cancer and personal risk factors. Someone mentioned recent research on Lx having better outcomes for TN, here is a link: http://jco.ascopubs.org/content/early/2011/06/29/JCO.2010.33.4714.abstract?elq=4fb8490e0ed5444ab6225f74da463b8f Good luck with your appointments.
Michele: Thinking of you and hope you are doing okay.
Karen: Thinking of you too - hope the trial proceeds well. It's pretty fascinating it involves a prostate cancer treatment, as I have been reading lately that the biology of TN is more similar to PC than other forms of BC. May be a very promising treatment!
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I read that study. It looks like it does not take in account if a women with a mastectomy has chemotherapy. In addition, it also mentions the concept of lvi and nodes affected, in a part of the study. With additional data that was introduced into the article, I found it hard to determine any clear conlcusion on lx having better results than an mx with chemo.
In particular this sentence brings more questions, because I thought the article (based on the title) was going to be about women without nodes affected: "In multivariate analysis, MRM (compared with BCT), lymphovascular invasion and lymph node positivity were associated with increased LRR".
I find for myself, I can type into the internet, the result I want. If I want to find that mx has better survival rates than lx, I can type that in and pull up data to support that. If I want to find that lx has better survival rates than mx, I can type that in and pull up data to support that.
The main thing is to find out from your Onc what treatment is better for your particular situation. We all have different risk factors, and some risk factors might be elevated more and respond better to a particular treatment than that of someone else with seemingly the same diagnosis but different risk factors.
Treatment lowers risk factors, and some treatments might lower the risk factor percentage more than another treatment. So it's important to find out the % of risk reduction each treatment would bring.
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Hi everyone,
I think my period is coming back. Darn it. :-) I haven't had one in 18 months.
I want to know from those who had your period return, when did it return? Were you scared? Did you feel like it was going to change your body and trigger anything?
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October will be 3 years since I've had a period. I was 44 at DX and turned 45 just before chemo. I had a little spotting at the 2 year mark, but nothing ever came of it. Unfortunately, I still have awful hot flashes and night sweats!
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Ok! Thank you so much for the info Tif. I was 43 at dx, and my period stopped right after the BMX, even before chemo. I only have a touch of spotting, so maybe I will be like you! I am 45 now.
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I have had Dawn's (Inmate) name added to the Angels List from the Threads site.
Doreen
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Just stopping by to say hi! My 3 month followup is on Wednesday so of course I am stressing out. Seeing a new doc also as mine retired.
I keep expecting to find a post from Dawn here. Thank you Dor Mac for adding her name, I miss her so much.
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Hi Relocate,
I too opted for bilat mastectomy due to the triple neg numbers as well as wanting matching breasts. I am in the process of recontruction, and am waiting for the final surgery to remove the expanders and put in implants. Sounds like it won't be for a few months yet. You will have lots of support during your journey from some really nice caring women on this thread. Take Care....and Hugs to you....Lori
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DorMac,
Thank you for adding Dawn's name.
Bak94, Hope all goes well with your check up and hope you like your new oncologist. Love your profile pic.
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Debra,
My period returned about three months after my last chemo. It scared me to death at first because I had some vicious cramps and then the flow was heavy and clotted. It was pretty extreme for me when it came back so I went to my Gyno. Turned out my body was expelling the IUD I had had placed when I was diagnosed. Once I had that sucker removed, my period leveled out and became more regular.0 -
OK. Got my wife's genetic testing results back today. She tested positive for the BRCA-2 mutation. She had a lumpectomy on April 23rd. She will complete chemo on August 6th. The plan, until today, was to begin radiation after chemo. Now, however, given the genetic results, we're 2nd guessing. Given the BRCA mutation, we're wondering if prophylactic mastectomy is a better idea than radiation. Can anyone chime in with any insight on this? Sure could use the help!
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AL Husband- we have a gal on this thread that is TN with the BRCA 2 mutation (most TNs- if they are BRCA positive are BRCA 1). I can't remember her name, but I will try to find her for you.
Ladies- does anyone know who I'm talking about?
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ALHusband- The member I'm talking about is cc4npg (Angelisa). I see that she hasn't posted since January, but you might want to send her a private message.
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BRAC2 has a lifetime risk lower than that of BRAC 1. If this were me, I would change course and have a BMX as well, and enlist the most aggressive treatment possible.
Your team might suggest that you are taking the best course already, so if it is that you and your wife opt for a BMX, make sure to convey that there is no other option you want to consider at this point, so that you aren't losing treatment time by going back and forth with the doctors in a debate.
To help you with all things weighing in on your decision, I just attached a couple of links about information relating to BRCA.
I also have read information that shows some amazing great results with BRCA carriers over that of non-carriers. I remember this clearly, as the information was so strong, that I e-mailed it to my genetic counselor, concerned that the wild types (those not BRCA1/2) have a higher risk of recurrence than that of BRCA carriers, in this one study. She was aware of the study and said they are furter exploring as to why that is. So that is very hopeful news for you and your wife. The study downloads into a PDF, but I'm attaching the link here so that you can pull it up if you'd like. You may have to paste it into google and then click on the directly from google.
clincancerres.aacrjournals.org/content/17/5/1082.full.pdf
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Hi ladies - Just had my first mamo post cancer. All is good, which I am very grateful for! I continually try to find info in TNBC with negative BRCA results, to no avail. Are there studies on recurrence rates with negative BRCA results published? Thanks for all the great info and support!
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Loafer ... BIG Congrats to you! Go celebrate!
Well the study I posted above for AlHusband, has the BRCA1/BRCA2/ and Non-Carriers in that study. You can click on the link ( or paste it into google) and read that. When you are not BRCA1 or 2, you are a WildType. Most studies seem to have all types lumped together, but this one has a chart for each type, and even further classifies each subtype by additonal criteria. It's may not be very comforting though, as in this one study, the carriers had higher success rates vs the wild type. I asked the Genetic Counselor about this and she still thought that stats were excellent for early stage TNBC, and told me not to worry about this study too much.
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Inspired...I was 43 when dx..mast chemo rads...my periods stopped after 2nd chemo..actually had it during chemo se weekend...errrrr....then nothing for almost 18 months until I had diep..thought I would bleed to death from period not the 12 hr surgery...then 2 months nothing then 4 weeks later one and now it has been since feb that I had one...not missing it at this point as now it is just a nuisance I do not need as my baby days are over ( my baby turns 21 on the 12th) .
Happy for the good reports...to those in tx hang in there...I feel like I am getting my life back now approaching my 2 yr mark soon...Hugs and kisses to all you brave ladies and supportive hubbies
Maggie
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Oh Maggie, thank you so much for the info! Funny about the 12 hr surgery comment ... ROFL!
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Mags - loved that period from hell.
Talking about periods....if you haven't seen this it IS definitely worth watching. It is the new Tampon commercial that just came out. Very funny and shows how far we have come from "the curse"
http://m.youtube.com/watch?v=xY9o3aDeQOw
Went for my second post dx Mammo Thursday. It appears Leftie has gotten jealous over all the attention Rightie has been getting. There's nothing worse than the feeling you get when the technician comes out and says "we need a few more pictures". When they do the US immediately.....you know it's not good news. Whatever it is it's small and the odds of it being cancerous are minimal. I had the choice of a biopsy or a 6 mo recheck. (Having already just started chemo complicates things. *thumps secretary who rescheduled my Mammo firmly on head*) My surgeon was on board with immediate biopsy based on my luck at "whatever can go wrong will". My other reason for wanting the biopsy is that if it does happen to be positive, it gives us something to check the effectiveness of the chemo by.
Biopsy is Tuesday, as long as my white count is good on Monday. I'm hoping Leftie is just a Prima Donna and it's just a cyst.
Hope everyone is well?0 -
Ladies - came across this link in another thread and wanted to pass the info on.
http://www.cornellmedicine.org/trials/cancer-and-blood-disorders/solid-tumor/breast-cancer/a-phase-2-study-of-tetrathiomolybdate-tm-in-patients-with-breast-cancer-at-moderate-to-high-risk-of-recurrence.html0
