Calling all TNs
Comments
-
Laura and Funnygirl: Welcome. You ladies may also want to check out the Calling all Canadians thread under Supprt and Community Connections on these boards. Quite a lively group there too.
Funny: I'm 3 years out and doing fine. There are many, many of us out here, it's just that after treatment, many ladies move on from the boards so you don't hear as much from them.
Laura: FEC and AC are equivalent, although as Christina said, E is known to be a little gentler on the heart. Generally Europe and Canada follow FED-D and US does AC-T. FEC is usually given on a triweekly basis, while AC is usually biweekly. Taxotere (D) is a taxane drug just like taxol (T). Some women find one or the other harder to take. Taxol can be done on a weekly basis. There have been some reports of permanent hair loss from taxotere but it is quite rare. There have been some reports that giving the taxane first is more effective for TNs - you may want to ask your onc about that. Wishing you all the best for your treatment and few SEs!
0 -
Welcome to the newbies!!!
Jan - I hope your surgery goes well. I love being a flat top! It's fun to wear sheer tops, and watch people try to find your boobs!
I am home in my own bed!0 -
Laurazack; Although a little younger I am almost like you I had my by-pass surgery date for August 31 unfortunately I found my lump in May so I guess I am off that list at least for the mext five years. I have the AC/T dose dense but I suspect they are going that direction to hit it hard. Depending on when you had you by-pass they might be looking at options easier on you system as it has been through a lot already.
0 -
Luah - Congratulations on your 3 year milestone.
Dawn - Can't wait to hear about your recent trip.
txjunebug - I am so sorry that you have to join us here. I can imagine how angry you must be when you just got your yearly mammo 2 months ago and everything was fine and now this. I also had a mammo 6 months prior and all was clear. 6 Months later a BC TN diagnosis, unbelievable. Please don't panic at all - your tumor size, and the fact that nodes are clear - everything sounds very very good. Actually, you have a good chance that you will be cured 100%. I am 2 years out myself. My tumor size was much larger than yours, although I also did not have any node involvement.
So, relax, consider having a lumpectomy, but have a tumor board at your hospital decide yoiur case and then go from there. Ask your doctor to present your case to the tumor board, for treatment suggestions. If you have family history of both breast and ovarian cancer, your insurance would approve you to get genetic testing.
I know that our Luah here on this board says this the best but I am gonna try and say it - NO, TN status is not the reason for a double MX. I have had a lumpectomy myself. TN can have the potential to come back on any other parts of your body, not always necessarily the breast, so why have your breasts removed? It could come back in the breast again, but that wouldn't be so bad of a diagnosis. It could be a new primary or a recurrence. It sounds like you have caught this at a very early stage - Congratulations!
I myself had no node involvement but still was recommended to have chemo. I am not sure what the standard of care is today, regarding chemo. But it used to be that Chemo was the best thing for TN's. So, girl, you are at a very good point, count your blessings that you are at a very early stage. I am wondering why you did not have a full body scan, instead are having individual organs tested. Good Luck and have a great weekend. You have nothing to worry about. Those reports tell much more than what we need to know.
0 -
Lovelyface - Yearly mammo is how we caught this. That was 2 months ago but feels a lot longer!! Tech got me all the way to the chestwall in the picture or I don't think I would even know I have BC. Went back to hospital and gave her a hug for saving my life. We both cried.
I had a full body bone scan, CT scan, sonogram of kidneys, pancreas, liver, gall bladder, stomach,etc. Next Thursday a MRI of liver as they couldn't tell exactly on the sonogram what the CT scan saw. Surgeon thinks it's just how mine formed but wants MRI for clarification. Wondering if I should have PET scan, too. Feeling a little like a science experiment right now with all of the testing
Everyone - thank you for the replys and welcomes!!!
It helps to hear from others who are in the same boat. Monday I have my 2nd surgery. Only got .66 mm clear margin on the inferior edge. Surgeon said with my age that her and Rad Onc (which I haven't met) think that a wider clear margin would be better. Right now it looks like we were able to get it all. I feel lucky, scared and nervous.
Did anyone have issues with your employer about treatments and missing work? So far, I haven't run into problem but expect that sometime in the future my boss may have difficulty with it all. FMLA is only 12 weeks and I'm using 3 of that for the surgeries.
0 -
Just catching up after being away from my computer for a bit. I went back to work on October 1st and although I am there every day (part time hours) I find myself SO mentally exhausted that I have been falling asleep when I tuck my son in at night.
Welcome to all the new ladies. Sorry you're here but yes, you will find all the love and support you need. We're all in this together. All the best to those of you waiting test results, surgery etc. The waiting game is the WORST part.
txjunebug: I had a double MX (my choice) even though my surgeon said he'd "get it all with a lumpectomy". I knew for myself that I could not live with the fear of keeping my breasts. I just knew that I would not be able to sleep and I'd worry with every little twinge. So that was my choice and I don't regret it for a second. I had no node involvement and still had dose dense AC-T chemo. I did not have rads (radiologist said I didn't need to). I finished chemo April 5/12. Trust your instincts and yes you're stats look good. It appears you caught it early and that's key.
A little update on me:
I had a complete pelvic ultrasound (routine for me) as I have a dermoid cyst that they've been watching for 4 years now. No change again this year and no issues found with any of my "girly" parts. I also had a bone desity test and it was found that my density is a tad low (probably from chemo) but my lower back density has actually increased. So good news from those tests. Had my yearly physical and all came back fine. So now just to have my mammo (not sure how that'll work after a BMX) on November 5th and my followup with my cancer team late November. I am coming up on my year and it's scary. October 15th was the day my family doctor called me at work to tell me that my lump "was not nothing" after she got my ultrasound results. I can remember feeling SO scared and sad a year ago today. The fear is still there but it's different now.
Hang in there Sisters. We're doing it together xoxoxoxo
0 -
Good morning ladies. Had my usual Saturday lie in and it was delicious. The old feller was at the cafe so I made the most of it.
Karen - you do make me laugh with your flat top. Can just imagine people trying to find your boobs. What is the next step for you now.
I'm sure I have told you that my youngest daughter Mandy and myself belong to the Cake Club. Last year the day after I was told of my cancer we flew to the South Island for our yearly cake conference. It was a really good distraction for me at the time as I didn't have so much time to think. We are going again next weekend and we are driving to the bottom of the North Island, and I am going to put off having my mammo, scan and port removal until I come back because I just don't want any results to spoil the time we are there. It should be a lot of fun and there are heaps of beautiful cakes and sugar flowers that the ladies have made to drool over. We have competitions and the cake shops all over NZ bring their shops with them so we can buy all the latest ribbons, colors, moulds and heaps of other things. So it will be a really good four day long weekend to look forward to.
Titan - just thought I would let you know that we have a long weekend this weekend so have Monday off as a public holiday. Yay.
Do you put your clocks forward or back depending on winter or summer in the US?. A lot of the farmers here don't like that because it upsets their cows but I love it when the clocks go forward cause it means summer is on its way even it we do lose an hours sleep.
Born - very shortly coming up a year also for me from diagnosis. What a year we have been through. I wonder how they are going to do your mammo with you having a BMX they will have nothing to (pinch). That I think is the only thing I regret. I wish I had, had a BMX not only because of the fear of having it in that breast also but because I hate wearing the prosthesis but at the time I didn't even think of it I was so shell shocked.
Well ladies I am off to do some Christmas shopping. I know, I know, its early but I like to do mine early so I can buy more for my grandkids.
Thinking of everyone who is having treatment, getting over treatment, or is just having a sad or bad day. Huge warm hugs to you all. Annie
0 -
Annie - so glad you were able to have a lazy morning. Your cake adventure sounds amazing. I miss doing things with my mom, I'm glad you and Mandy can make some more memories.
Yes, we fall back an hour. I dislike it, because it gets dark so early.
I see my onco Wed. I guess we'll schedule my chemo. I'm having gemzar/carboplatin. I think it said my hair will thin. I'll go get it cut short, to be on the safe side.
The stress and pain pills were causing me strong cigarette cravings, so I bought an electronic one. Have you ever tried one?
Love to all...0 -
Hi everyone, I've been gone for a while. We left for our trip to CA and Hawaii on 10/7. We were supposed to be gone until the 20th, but my mom had an aneurysm on Wednesday morning so we had to fly home immediately. She is, unfortunately, not going to make it and we moved her to hospice today. It's sad, but she also has Alzheimer's and well, this is going to be an easier final journey for her than the lengthy decline of dementia. At least she has been able to maintain her dignity to the end. She looks very peaceful, like she's sleeping calmly. It's the best I could hope for under the circumstances.
I've tried to read as much as I can to get caught up with all of you, including the newcomers. Wishing everyone a beautiful weekend.
0 -
Oh Luv. I am so sorry. Please know that I care about what is happening in your life right now. Wishing your mother a peaceful journey. And even though I don't "know" you, I do know that you have been a wonderful daughter. And Your Mom would be so proud of you, simply for the kind of person you are. Prayers to you and your family. I hope you can feel the warm hug I am sending as you sit by your mother. May sweet memories bring you peace.
0 -
Luv, I am so sorry to hear aboutyur mom. I hope that she remains comfortable and pain free. Hugs to you...
0 -
LuvRVing - so sorry to hear about your mother's aneurysm. Hope you're holding up well under the circumstances.
0 -
Well we came home with heaps of pressies for the kids including a trampoline for my little Caitlin and Ben but they had to deliver that cause the boxes for it were so big and heavy.
Kare -have you ever smoked? Let me know how those cigarette thingy goes and I will try it because for the life of me I just cannot give it up and working from home I smoke more. I know I shouldn't especially now but its so flaming hard. I do hope your chemo goes well and you don't lose that lovely hair of yours. Mine is only just growing back and is very very short with no sign of my own red hair.
Luv - I am so sorry to hear about your poorly mum. Hopefully she will pass peacefully and in no pain. It's a shame your holiday was cut short but you would have wanted to be there with her I'm sure.
I'm getting pretty worried about Kathy and her mum. Kath hasn't been on here for ages and I knew she was worried about losing weight even though she was eating all those Dove bars.
Oh well the day goes on so better go and get something done. Catch you later ladies. Annie
0 -
Luv - I'm so sorry you have to face losing your mom while fighting your recurrance. I'm sending warm hugs as you help your mom in her final journey. Jan
0 -
Luv - I am so sorry to hear about your mom and you vacation plans.
I hope she has a gentle passing.
Annie - I smoke when I have a cocktail - which isn't very often, the pain pills set off the same urge. So far the electronic one is working. Give it a go - I bought a disposable one for about $6 to try.0 -
Luv-So sorry to hear about your mom. My heart goes out to you.
Funnygirl-you are right, I had bad delivery, and I send my heartfelt apologies to you. I had a bad day, and I took your words to mean that those of us that have recurred or had new primaries were negatives and you only wanted to hear from those with the best stories and better outcomes. That hurt me, and hurt me to think of those that have fought bravely before us like LJ and Suze and lost their battle are stories that some do not want to hear about, only the positive, but they were the most positive people I knew. Am I making sense? I don't want to hurt anybody or scare anybody. I understand the loss. I had bmx and could not have reconstruction yet, now I am just a week out from a full hysterectomy. I am moody! My past year and a half I have been in some kind of recovery. It is scary to deal with all this but you will get through it . And I hope to get through my crabbines. And get through these hotflashes.
0 -
Welcome back our kind wonderful BAK
0 -
Thinking of you Luv and your dear mom.
0 -
Luv, so sorry to hear about your Mom, I hope she will be at peace. Sending prayers your way.
0 -
to all the darling ladies new and old (not in age). We try so hard to be positive and upbeat but there are times we say it as it is. Not because we mean to hurt or offend but because we need to share our paths. To love, help and support each other is why we are here. Believe you me I wish with all my heart that none of these forums were needed. I wish we could have all met under completely different circumstances.
When I first posted on here I was scared, lonely and lost. This turned out to be my lifeline. I do not always agree and sometimes do not like what I read however I do know that we all came hear for a reason. To be together through the good and the bad.
All my love
0 -
Luv, my prayers are with you and your familly during this difficult time. I am glad you think your mom is now at peace and is better this way.
Welcome to the newbies. Ask any questions you have. This forum has been a tremendous help to me. I am almost a year out too (from my surgery). I had a lumpectomy because my tumor was under 2 cm. I feel good with that decision as it is not a recurrence in my breasts that I fear, as I feel I will catch it again if it does. It is the fear of it coming back elsewhere that I cannot seem to shake because it took so long for them to get me into surgery and the tumor grew so fast and started to enlarge my lympnodes, even though nodes were neg. Now that treatments are done, I feel I don't know if it cleared all the bad cells out. I met with my MO this week for the first time since the end of treatments. I had a clear mammo a month ago, but like I said, I don't give much credence to mammos because I have dense breasts and my tumor was close to my chest wall. I have had a cough since I had Adriamycin and coughing up phlem. I think it is drainage from my sinuses and ears but it bothers me that it hasn't gone away. I have also lost a lot of weight but am hoping that is due to starting Metformin. I am down under 110 lbs. Weight loss and low grade fever are the only symptoms I had before finding the lump. Anyway, my MO said he would order a PET/CT if I wanted just to get an all-clear for my peace of mind and I am going for it. He doesn't feel they will find anything but he wants to do whatever will make me feel better. He said we could use the cough and weight loss for a reason and he would fight with the insurance if needed. It must have been approved because I am set to have the scan on Tuesday. I hope it will finally give me a peace of mind so I can move on.
The same day, I am going to see a cardiologiest as I have been having funny heart flutters and am scared the adriamycin and/or rads has damaged my heart.
0 -
Luv - while I am new to the board, I will be praying for you and your family.
Again it is wonderful to talk to others that understand.
0 -
BernieEllen: beautiful post.
Annie: the cake conference sounds wonderful - yummy!!
Michelle: thoughts with you at this time.
(((hugs to all))))
I am doing OK on rads. Lubing up lots and using the saline soaks which take away the itchiness. Seems I'll be going on tamoxifen after my trip home to England. Will have to gen up on that as something else which is new.
0 -
wow...I have to think that all of you are the best women I have ever "met"....
Bak...even with the new ladies there still has to be reality....we all want to hear that we will be fine...but we all have to face facts also...I guess we have to come to terms with ourselves about what may or may not happen...
alot of people here say it is a crapshoot and it truly is..
dang..but I always used to live for the weekends...now I enjoy Mondays...well...somewhat...
0 -
Hi Ladies..I haven't posted on this forum before, but I have a question and hope you can help me. I am TN and stage IV right out of the gate. I have not been on any kind of chemo since May 25. I had right mx and finished up rads last month. My last CT scan shows liver stable and 3 nodules on my lung. This is really starting to scare me. And I am finding it very unusual that I am not on any treatment. Onc is just wanting to ((monitor me)) til more scans in Dec. Are any of you not on any chemo or treatment? And If so how are you feeling?
Thank you so much!
Terry
0 -
CatW - I hope you get good news from your PET, so that you can ease your fears and enjoy moving forward.
Terry - Welcome! Great news that you are stable. You may be able to have your questions answered better, in the stage IV forum. Wishing you all the best!0 -
Luv- I am very sorry to hear about your Mom. I hope she is comfortable and passes peacefully. Big hug.
0 -
Did you have chemotherapy? Just wondering what it is like?
0 -
Bernie ellen, did you have chemotherapy? How old were you when you were diagnosed?
0 -
Luv - Hearts and prayers are with you.......
0
