Calling all TNs
Comments
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Sorry I posted twice. LOL
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suze such great news high five for you.
sukie I would want any cancer cells out of me, just my opinion good luck
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Suze- *GREAT NEWS!*
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Hi, I have not been on the list too much of late, but wanted to know what you thought of the following tx for tnbc idc, 8 wks of ac every other week and wks of taxol. I start also with Dex, lorazepam and prochlorperazine. I will have surgery when the chemo is complete and then radiation. The mass is 2.7cm, dx stage 2B. Does this sound normal? I start my chemo on Wednesday, Jun 8.....yikes......
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Ok girls I have question? When I was originally diagnosed I was given my pathology report that was er+. I immediately contacted the cancer center where I was treated because I have had so many problems at my local hospital where I was diagnosed. Anyway, after I had My bmx I was told to my surprise that I was TN! My oncologist spent the next 4mths trying to get my tissue from my biopsy at the other hospital. Finally it was sent. It was determined to be TN. it was also sent to a 3rd party and was TN. Would you take legal action? My OBGYN was very upset when I told him because he has to be able to trust the pathology lab!! What if they would have told me it was benign!!!! They never even contacted me to admit the mistake.
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Suze35- I am so happy for you!!!!!!!!! You go and celebrate your clean scan! That is a great way to start your new chemo.
Sukie, I tend to be overcautious, so I would take nodes out. Had over 40 nodes taken out in 2003 with my first bout of bc, and have not had problems with lymphedema, I know that having that many nodes out is rare and even more rare not to have problems with that many nodes out, but I was glad they did it, although only 2 were found to have cancer, one was microscopic, which was the one found with the snb. I am also doing neoadjuvent chemo this time and I am sure I will have them take out some nodes, but not 40 like last time! But honestly, you need to do what you are most comfortable with. Did the docs give you any useful information to help with your decision?
Tiffany, that is horrible! I don't know what I would do, but the lab does need to make changes in order not to have that happen again, and maybe a lawsuit would make them see how serious this is.
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Suze35- I am so happy for you!!!!!!!!! You go and celebrate your clean scan! That is a great way to start your new chemo.
Sukie, I tend to be overcautious, so I would take nodes out. Had over 40 nodes taken out in 2003 with my first bout of bc, and have not had problems with lymphedema, I know that having that many nodes out is rare and even more rare not to have problems with that many nodes out, but I was glad they did it, although only 2 were found to have cancer, one was microscopic, which was the one found with the snb. I am also doing neoadjuvent chemo this time and I am sure I will have them take out some nodes, but not 40 like last time! But honestly, you need to do what you are most comfortable with. Did the docs give you any useful information to help with your decision?
Tiffany, that is horrible! I don't know what I would do, but the lab does need to make changes in order not to have that happen again, and maybe a lawsuit would make them see how serious this is.
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Thanks for the support.......:)
Suze35 great news on your scans...................yes I am doing the AC and it has been rough. I knew I would have side effects but geez I did not know I would get them all on week one....(I know that it can be worse) I sure hope and pray it is not. I got the Claritin, and I have been trying to drink water like so many have suggested but it is not working so much for me and I like water. The acid has been horrible so I have had to add an acid reducer. Glad to hear that the Taxol has been easier on you because everything I have read about it seems as though it is HORRIBLE!!!
TifJ thanks for the info. on the steroids and the eyes... Today thank God has been a bit better.
Now, I have a question for you all. How do you deal with "death" issues. Everytime I say something about not doing this, I get well you have two choices.........do it or die!!! While this may be true being harsh does not help when you are in such a delicate situation anyways. Then I to have a dilemma because I have had no scans at all. The surgeons (I had two opinions) said they see no need for a scan, the oncologist said he will order if I want it but he sees no need and normally would not order the scan, because right now he feels it would be so microscopic that we would not see anything. Maybe they figure since I have to do chemo anyway we will get anything else that might be there. I just don't understand this whole thing. Some get scanned like crazy and some don't get scanned. I have talked to many people and they were never scanned either and things are still well after years with them. I have not shared alot with you all but I am agoraphobic and medicine phobic so all of this is HARD HARD HARD for me (not that it is not with everyone) I am just explaining so you all will know a little about me and why I FEAR things so badly.
I have been thinking about moving to an Oncologist in my area but hubby wants me to stay where I am and so does my surgeon but it seems to me that AC+T are the same treatments everywhere, am I wrong? Also, I fear with all the stuff I read that you are always going to have a reoccurance and that we are fighting a losing battle. I know that is not positive but that is why I am asking you all how you deal with it all. I don't want to die, but are we fighting a losing battle? Oh I have a ton of stuff going on in my mind but I just don't know how to deal with all this crap. Today was better thank God but tonight my tummy is doing all kinds of weird stuff and when does one know when to call the doctor. Like I was constipated for days, then diarrhea and now tonight just gassy and painful but it was not like that until about the middle of the day and after we ate dinner (nothing gassy though). Can we treat our tummies with OTC stuff or do we always have to call the doctor.I guess that is enough for tonight..........thanks gang for letting me vent
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forgot to ask...............does the side-effects get worse with each treatment or better? Like does it accumulate?
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Suze...great news on your scan!! Awesome!!!!
Stupid boob..oh man..I wish I could tell you that you will be fine.but I can't..however...there is a GOOD CHANCE you will be...really... no one really knows..it is so scary..I agree...mentally cancer is so hard to deal with..vent here as you need to..it really does help...everyone has their freaking out moments...but can I tell you it does get a little better after some time?
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Stupidboob - first, we are absolutely NOT fighting a losing battle!! This can be beat, it IS beaten every day by thousands of women. The statistics are misleading - we have a DIFFERENT recurrence pattern from ER+, but it really isn't worse. TNs recur quickly if they are going to do so. After 3 years, that risk drops significantly, and after 5 years, we are back to the same risk as the general population. It is a sharp curve. For ER+, that risk always remains higher, even 20 years down the road. So it seems all doom and gloom, but it isn't as bad as you think.
I am so sorry you are having to struggle with other issues on top of the BC. Would you be willing to go in for a bag of IV fluids? I would schedule a "chair day" with every AC treatment, usually a week after, just to get fluids. It really helped. If not, try other lightly flavored things, such as diluted Gatorade. Something easy on your tummy.
Be sure to take Colace every night for the constipation - the anti-nausea drugs will bind you up. My doctor had no problem with me taking OTC stuff, and I used Immodium for diarrhea and Prevacid for heartburn. Just be sure to let them know you are on them.
Unfortunately, the effects are cumulative, not so much the nausea, but the bounce-back time gets longer. I always felt weird on AC, but I do think a lot of that was the steroids.
Can I gently suggest you try and find a therapist who is used to working with cancer patients? Mine has been invaluable in keeping me focused and grounded.
Finally, scans are a "controversial" thing. I was scanned from the start to rule out obvious Stage IV due to larger tumors and 4 nodes. I get scanned to high heaven now because I still have active nodes, and my doctor is trying to stay ahead of any progression. But statistically, scans do NOT increase survival benefit - finding it has spread early really makes no difference. Hard to believe, but that's what studies have shown. So if you aren't comfortable with scans, that is a reasonable choice. If you want one, then I think that is also reasonable. It is a personal decision.
I really feel your pain and fear, please hang in there.0 -
Sukie - I'm on the same fence as bk - I didn't want those nodes in me. I had 12 removed (don't have a lot), am getting nailed with radiation, and only have mild LE. I've been doing PT to stay on top of it.
Tiffany - that does suck that they got the pathology so screwed up! I know that at the very least, nasty letters would be sent to various levels of management. These are lives these people are messing with!1 -
Suze - what wonderful news about your scans. Hip hip hurray!!
Tiffany - the waiting is the worst. Hopefully you'll get your good news soon!
Well, my bean bag just caught on fire in the microwave. I had to extinguish in the sink. The house smells aweful and my DH is trying to clean the black out of microwave. Ahh and I was so looking forward to relaxing with a cup of tea and my heated bean bag on my back. Oh well
Take care ladies!
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So happy for you Suze!
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Stupidboob: I agree with others who say this is not a "losing" battle that we are facing. According to the Triple Negative Breast Cancer Foundation, most of us will not have a recurrence. I can certainly understand the stress you are feeling. I think most of us would benefit greatly from a therapist during this time. I also found that it helped me to take some anti-anxiety medications to get me through some of the toughest times, even though normally I don't like to take anything. This thread has helped me a lot also (thank you, Titan).
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Suze...congrats on the great news.
Stoopid Boob, I was scanned up the wazoo, but I think it was more a requirement of the experimental study. Couldn't go in it if you had mets.
Lynn thanks for that site.
I have to say I'm impressed as hell by the combined knowledge of the people on this thread. I'm a nurse and finding I don't trust in my caregivers judgement at times.
They put my first IV in my L arm (dominant arm). I asked why. They said, because your nodes haven't been tested yet, we don't want to use your right arm (R-sided Breast tumors) I whacked that IV all day long with my pocketbook, lol On my first infusion day, they again went for my left arm, and I said let's revisit this R-arm thing again, and I got a little more information. We, don't want to use the right arm, and btw, once you have surgery, we'll never going to be able to use the right arm again" WHAT?????? If you can't use the right arm after surgery, why the hell would you want to blow the veins in the L arm now. She said "good question" and called my doctor. We WILL be using the R arm from here on out. What in the hell where you ever thinking??????
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Kymm, Bkj66, Suzie 35. Thanks for your thoughts. I think my judgement might be a little clouded by the fact I saw a really nasty case of LE in the waiting room last week. The poor ladys arm was as big as my thigh. I also really like and trust my Onc so I weigh pretty heavy on her opinion. 4 months ago I'd have let them cut off my nose if I thought it would help but I guess I've had a little too much free time to freak myself into all the things I might have to deal with later. Maybe I'll get another opinion just to ease my mind. It does seem a little stupid to risk it.
Stupidboob,( I love your name) Most of us here really are going to be just fine. Others have said it, our risk is higher for the first couple of years and then there is a dramatic decrease. Be careful what you read. Things are getting better for us all the time. Studies from even 5 years ago are no longer acurate. There is a much better understanding of how to treat us now that we have been identified as a specific sub group. You might not have even been given chemo a few years ago because they didn't understand the benefit..now they do. Hang in there chemo can be rough but its doable. After a coulpe of treatments you'll be able to get ahead of some of those nasty SEs and it won't be so bad. Come here anytime you want, there is always someone on these boards who knows how you feel, there will be lots of times when your non-BC support group just doesn't get it, we all do.
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Suze- HAPPY! HAPPY! HAPPY!0
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StupidBoob -
I have never had any scans either. My doctor says they cause more stress and more procedures chasing false positives. He says if I feel bad or answer his questions with the "wrong" answer then we do scans. At first I had a very hard time dealing with that, but now I kind of understand it, or I'm getting used to it!
During treatment (AC), I felt so gross. I finally told myself that I am essentially being poisoned to kill the cancer. And that helped me to deal with the funkiness that I felt. I took all the anti-nausea meds they would give me. I have an irrational fear of vomiting. I also discovered I only had nausea if I allowed myself to get hungry. I had to nibble all day and I felt so much better. I would even wake up in the middle of the night and my partner would get a little piece of bread with peanut butter on it. Also, take your stool softeners!! I almost took myself to the hospital over this, honestly!
As far as dealing with death... I think our percentage is about 80% for 5 year survival, so why should we assume we are in the other 20%? I want to be in the 80%! And odds are that I am, and so are you!
Love everyone on this site!!
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Hi Ladies!
Haven't posted in a while; just trying to get my head around all that's been going on.Finished up chemo on April 28th and am well into Rads. Don't like the weekly x rays they give me "to verify positioning", but I should be all done by July 8th.
I'm tired and cranky and haven't been eating the best of foods (which I know is a risky move given what we know about TN BC), but I'm also trying to NOT beat myself up too much about it.
I'm anxiously awaiting new hair growth (i have some peach fuzz now) and am posting on the Hair Hair Hair thread as well.
Thank you ladies for being such awesome support!
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sukie10 - There is a fair amount of controversy within the medical community about axilla dissection versus radiation for treatment of nodes. There are several threads on these boards and you may want to do a search. I did a lot of research myself on this back in 2009, and if I have time, I will try and look it up for you. A very recent study showed rads were equivalent to surgery in effectiveness; and another that was just released this week at ASCO showed the benefits of regional radiation (I think in addition to node surgery) in reducing risk of recurrence.
All that said, after an SNB showed 1/4 nodes positive with micromets I decided to have my axilla removed. Ten more gone, and none cancerous. Despite the emerging research, I don't really regret my decision (especially with an aggressive TN cancer), as at least I know my node status, and know that the cancer didn't progress further. And if it had, I would have gotten the mass out. No guarantees wrt to distance recurrence either way, I realize. I'm fortunate to not have suffered from any LE (and by the way, rads can cause LE too.)
It's a very tough decision to consider more surgery. (I was anxious to get on to chemo.) If you have doctors you trust, listen to their views, then listen to your head and your heart.
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Suze: WAHOOOOOOO YAY FOR YOU!!!!!!
Sukie: My first BX (whom I fired) refused to check my lymph nodes (at City of Hope of all places!!??) and said I would get radiation but the BS I decided to go with DID check my lymph nodes and he took only two sentinel nodes, when they were clear he went no further. This is my recommendation having had adjuvent chemo myself. Hugs!
Stupidboob: My first BS had a horrible "bedside manner" and kept telling me if I didn't do what he said then I would die. If you are uncomfortable with your dr's, then get a third opinion at a different hospital. The third was a charm for me and I know of one women who got 7 opinions before choosing her BS, though insurance typically pays for only 3. You have to be comfortable not only with your treatment but with your dr's. That being said, chemo IS our best option for long term survival. I wish this were not so but you can do it! There are no guarantees but you want to go in and give your body a fighting chance and chemo unfortunately is necessary. Personally if I were in your shoes I would want a dr. who is willing to do a full MRI and at least a PT Scan and an US. TN is nothing to fool around with and your dr's need to know how to treat and deal with TN. Big hugs!
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Sugar - I made myself a rice sock, it works great and no meltdowns! I just dumped a bunch of white rice in a long sock and tied it off. I microwave it for 2 minutes, voila! I have found that if I microwave it a second or third time, it holds the heat longer. I hope you were able to get the mess cleaned up, burnt plastic smells awful I know.
slc - congrats on finishing chemo!! Yay!!!
MBJ - good advice on the second, third, or more opinions. I don't regret my choice of BS because she is one of the best, but her bedside manner leaves a lot to be desired. I was able to block that out, but not everyone can. You have to be comfortable with your doctors, thats for sure!
I just got my extended radiation schedule, sigh. I will now be getting zapped through July 6th, thanks to that stinking new node. Oh well, at least the techs are fun and cute, but the 30 minute drive each way is starting to bug.
Have a letdown headache today, hate those. Hope everyone is beating the heat today!
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Suze,
So happy for you regarding your scans!!! YAY!!!
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Well girls pathology back and I got the "all clear" I swear I wanted to skip out of the cancer center!!!!
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Tiffany - yayyyyyy!!!!!
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I've got another routine med onc appt tomorrow but this time he didn't order tumor markers. Fine with me, I guess.
So, a quick "feel" and I'm outta there. After all, what else is there to be done at this point? I feel like they are a waste of time, for the most part; just "going through the motions". And yet I've still got two more years to go.
Sigh.
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Tiffany and suzy 35. I love the good news this week!!
I've got a call into another Onc and another surgeon in another city for another opinion. I'm going to take the first appt. I get and go with the advice that I am given. It's the deciding vote. In the mean time I'll do my own research just to be sure. I really wish they just told me what I had to do because I'd just do it. It's not like you show up at chemo and they let you select your own drugs. If there is never a recurrance this will never matter but if there is I need to feel like I made the best decsion or I'll never get through this a second time. Chemo has worked so well that I really feel like I have a fighting chance now, I'd like to come out of this with as little damage as possible, But I do want to come out of this no matter what.
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heiditoo, I go to appointments and think I could be an oncologist... I tell them things... it's so weird. I had TE surgery last week and the nurses were awful. I don't know what has happend to that profession but I couldn't wait to get out of there ... and everyone of them asked me why I removed both breasts REALLY ....
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Tiffany - wonderful news!
I had two sentinel nodes removed and they were clear so my surgeon went no further. I also don't think I had radiation to my nodal area. My full breast was radiated though.
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