TN Metastatic cancer fear
Comments
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hi there - i've just gone stage 4 - can you advise what treatment plan you did that helped you get to 2 years - I feel my onc is a tad slow on this front. many thanks m
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Hello Miffy,
I apologize if my original post caused any confusion, I am staged at 2b. The chemo treatment I am currently undergoing is AC followed by 12 weekly Taxol.
The 2yrs was my question for the ladies to advise me incase the cancer has mets, that was the timeline my MO gave in terms of the worst prognosis outcome. As you can see from the replies there are many positive responses even from the ladies who are stage 4.Hopefully someone with experience will come along and address your post on treatments.
Hugs,
Zoe
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Hi,
I am TN and I am two years out. My tumor was bigger than 2.5 when I found it. I had chemo first and watched it shrink with every treatment. I had a lumpectomy and rads. I have been clean ever since. I was very worried that it would come back at first but now I just enjoy life. You can't worry about it all of the time. It took me a while to come to this point. I try to find humor in everything. I was told that I have 10-20 years. Fire the doctor who said 2 years and find someone else. You deserve better.
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Hello - I am new to this site but not to TN breast cancer. Eight years ago I was diagnosed with TN in my right breast. I opted for a lumpectomy. At the time I returned to the surgeon's office he said that the margins were clean as were the nodes. I was surprised to learn that I needed to do chemo because of the cancer being TN. After the chemo I did six weeks of radiation and had been cancer free until recently. Originally, I did not realized what the TN diagnosis meant.
A recent MRI showed a potential problem. An ultra-sound guided needle biopsy showed cancer cells in my left breast in two locations. I recently had a masectomy and am now being advised to have a series of four chemo treatments. Again, the cancer was found very early. The tumor size was 0.8. Five nodes were tested and none were positive.
My oncologist has said that my chance for a reoccurence is approx. 15% and if I have chemo that is reduced to approx. 9%. I am reluctant to repeat chemo and wondering if anyone else with a similiar prognosis could share their thoughts on what helped them to reach their treatment decision.
I appreciate this forum and will look to read how others are coping on their cancer journey. There are many brave people out there and I wish you all well.
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Good for you Veggy - each day is a gift and to not live it to the fullest is wrong. Of course, some days are better than others. I made it eight years after the TN diagnosis and was there for the birth of three grandchildren and many other significant family events.
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Hello bak94
I was reading through the blogs on TN and came across yours. I, too, was diagnosed over eight years ago with BC in my right breast and had a lumpectomy, followed by chemo and then weeks of radiation. Again this Sept. I learned that I had cancer cells in my left breast. I opted for a masectomy since the tumors, while very small, were in two locations. I again learned that they are TN. I have had the BRAC test and the BART test and I do not have the gene. I guess it's unusual to have two diagnosis of TN.
What treatment was recommended this time and have you decided to follow the doctor's recommendation. My cancer was found on a MRI and was so small that had it been smaller they would not have been able to do a needle biopsy. There were five nodes tested and none found positive. My oncologist said I have a approx. 15% chance of reoccurence without chemo and with chemo the odds drop to aprox. 9%. I'm reluctant to repeat chemo. Would apreciate you sharing your thoughts and what treatment you are doing. I will keep you in my prayers.
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Mitymuffin - Good morning. I read your blog where you mention having blood work - I'm not aware of doiing blood work as a diagnosis tool. When time permits, I would appreciate some info. You're right about the cancer journey feeling like you are walking on thin air. But, on my first diagnosis I made it eight years and managed some very good days during those years. Granted chemo was hard and i said I would never repeat - but, I'm finding myself considering that option again.
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Good morning. I'm new to blogging - tho not to BC. Could you tell me what AC treatment is? I'm not sure and am trying to follow along! Thank you.
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Adriamycin, aka the "Red Devil," chemo.
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thank you Veggy - I had that the first time - was supposed to have four treatments but after a negative reaction they cut the series to three. My oncologist said I shouldn't repeat....which is fine with me.
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I had that too. I didn't have any bad reaction to it. It was kinda eerie to pee pink though. I'm glad they warned me about it. I would have been screaming.
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The A stands for Adriamycin and the C stands for Cytoxan...One is red which they will inject and the other is a clear liquid which they will they infuse
Both very strong chemo drugs...
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Sharon,
A 2nd TN diagnosis might not be very common, but I don't think it's rare either. I was diagnosed with TNBC the first time in 2002 and had a 2nd primary in the same breast, also TN, in February of this year. The first time I had a lumpectomy, 8 infusions of CMF, followed by radiation. Like you, this time I opted for a BMX (I'd had a biopsy on the other breast 2 years prior) and wanted to be done with this once and for all. Or at least as close as I could get. Following my surgery, I did 4x AC and 4x T DD (my tumor was large this time and I didn't feel I could forego chemo). I react poorly to chemo so it wasn't pretty, but I made it through and am now 4 months post treatment and feeling better every day. Because your tumor was very small, it makes the chemo question more difficult. Best of luck to you.
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Hi Sharon,
I am so glad they found yours early. Mine was not found early either time, seemed to grow right between my mammos and my insurance was reluctant to pay for mri's after 5 years of being cancer free. I sought two opinions and went with the more aggressive one, which included ac for a second time. I think with triple neg it is better to do the more aggressive treatment, but that is just my opinion. I am brca 1 positive and I have heard that it is not that uncommon to have a second breast cancer. Chemo was a bit more difficult a second time, but doable. It seems to be a more difficult decision in your case about doing chemo as it only makes a 6% difference, my decision to to chemo was quite easy as I am at least a stage 3. I did chemo first and had a complete response, then bmx and next radiation. Good luck with your decision, it is such a personal choice, but you will pick what is right for you. Please keep me posted on your decision and feel free to ask anymore questions!
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Sharon, I think the blood work can show indications that there are problems in the bones or liver. Obviously it can't give the information that a scan will show, but can indicate that a scan needs to be done.
I'm sorry you have to go through this again, but remember how successful your treatment was the first time (8 years!).
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Thank you for your response. I wish you well on your journey.
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Thank you for taking the time to respond and for your opinion. It is helpful to hear what others think and what led to their decisions. This cancer journey can take many twists and turns. It seems that we were both blessed with many years in between. I remember being afraid not to do the chemo the first time and I guess I didn't even think that I had the option of not doing it. But, after completing the recommended treatment plan I felt a bit more at peace during those years. I wish you well on this leg of your journey.
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bak94
I apologize if my response to you wasn't clearly addressed. I did select the post a reply button under your response but being new to this I'm not sure how this works. My reply showed up in order of the time it was sent and I didn't put your username on it. I do appreciate the thought you put into your response and your opinion.
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Hi,
I apologize if my posts sound overly concerned about nothing . I thought for TNBC chemo treatment with AC and T should be enough to keep cancer at bay. I am confused with what I am reading in the link about "triple negative patients should go straight into a clinical trial "
http://abclocal.go.com/ktrk/story?section=news/health&id=8312076
I wish I can stop look into internet and make peace with myself that I am treating my cancer to best they have to offer . but I read things that makes me wonder if I am educating myself enough on it.
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A TNBC diagnosis is very scary. I am not as brave as most women with BC. I am now being treated for a secondary cancer caused by my chemotherapy and radiation for the TNBC (leukemia). Anyway, I take Xanax every day to calm my fears and I do not feel guilty for taking it. It really helps.
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Zoe Lily,
I am in a clinical trial at the world re-known cancer center in Houston, TX, The University of Texas M.D. Anderson Cancer Center. This Cancer Center is rated #1 in the world. People all over the world go there for treatment. Look up M.D. Anderson on the computer. There is a wealth of information on the computer site. I hope this will help
Faye
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Once you fire your first onc., it gets much easier. Take your time, maybe find a local support group, ask around about oncologists and consider trading up.
I was dx in 05 with high gradestage 2 IDC, had ac, taxol, and 37 rads, have some ongoing after effects from taxol but i am here.
Hang in there. Hugs
MC
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Oh, niciop - leukemia from treatment? That really sucks! How were you diagnosed? What kind of treatment are you having now? Sending you hugs ((( niciop )))
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Hi Zoe
If you look at it another way, there's a 60% chance that it won't come back!
Have a look at the link below. Not perfect but may help!
http://community.breastcancer.org/forum/8/topic/768161
Alicethecat
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Crabbiepatt, Thank you for your kind words and interest. Yes, it really does suck! Several months after my TNBC treatment was over, a blood test (followed by a bone marrow biopsy) confirmed that I had developed Acute Myeloid Leukemia (AML), another aggressive and deadly cancer! The doctors tell me it is a rare side effect of the chemo drugs and/or radiation. I was diagnosed with AML in Feb. 2011 and I am still getting treatment. I have 3 days of chemotherapy every 4-6 weeks, followed by multiple transfusions of blood and platelets. If the chemo does not work, I will need a stem cell (bone marrow) transplant.
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Yes, sadly it is a rare side-effect of chemo and rads. The same happened to my Mom.. but she only had radiation with a radical mastectomy. They do relay it back to her BC. Back then things were different. I was on a chemo, FEC x 6 which also carries that risk. Rads defo play into it too. As I said, it wasn't chemo in Mom's case.. it was the radiation.
My prayers are with you niciop... please keep us posted!
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mitymuffin -- what blood tests do you get? I've just completed my chemo regime, and my onc is of the no scans no blood tests unless you have sypmtoms mindset.
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i still have my port in and every 6 weeks when they flush my port they check what is called a ca27-29. twelve weeks ago my numbers were 38 which is good 6 weeks later it was 43 and then this last time was 109, so my oncologist ordered a cat and pet which has showed something going on. they biosped a spot on my sternum last week waiting for the results tomorrow. i think it is worth the blood work i would rather have false positives than not, and unfortunately it is,so i pray it is early enough i just finished chemo 9 months ago and rad. 6 months ago
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hi Sharon9282
May I know your first dx? How big was it ? thanks.
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