Calling all TNs
Comments
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Inspired, thanks for posting the articles about aspirin. I started taking a low dose aspirin a few weeks ago for cancer prevention. I take it at dinnertime. It's interesting that it seems to help particularly with TNBC. It's such a simple thing to do and I figure it has other nice side benefits.
I'm getting #9 of 33 rads today. The rads seem to irritate my already irritated nerves in my underarm area. I see the RO on Monday and will talk to him about that. My digestive system is seeming to finally get used to taking metformin (also for cancer prevention). I'm supposed to be increasing my dosage this week...we will see how that goes. Since I'm going to be taking it for a long time (at least 5 years), I'm not worried if it takes me a few extra weeks to get up to the full dosage. I know my body WILL adjust, and I will get there with it.
I made it to aerobics class 4 out of 5 days this week. That is huge for me. My stamina and strength have improved wonderfully since finishing chemo and getting through surgery. I know the last few weeks of rads can be rough with regard to skin issues (and also fatigue) so I haven't created any "cast in stone" goals for exercise while doing this part of treatment. I do like how fast rads are so that part is nice. Hubby time it the other day. It's about 5 minutes from the time I go in until I come back out again. We live close by to where I'm getting rads so that is also very nice. Much different than the 2 hour drive each way I used to make for chemo and all my other doctor visits.
I hope everyone is doing okay. Thinking of you all with fondness.
Hugs,
Kay
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simple - glad that rads are going well for you. I found that it got worse as time goes on, and the hardest part for me was the 2 week period after they finished. But we are all different!! You may not get the fatigue - I kept waiting for it, and it never came - so that was a plus. Use lots of cream, and prevent skin on skin contact - especially while sleeping - I used a sock and filled it with cornstarch (very malleable and conforms to your own shape) to slide in my armpit at nights - it worked great. I also exercised all the way through chemo and radiation - I found it very beneficial.
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Read the posts about the relation between thyroid issues and breast cancer. When I was diagnosed with TNBC few months ago, I remember an Oncologist clearly asking me if I have Thyroid or not. Yes, I have hypothyroidism. And she mentioned that there is a suspected link between it and breast cancer, mainly TNBC.
I developed thyroidism in 2008, 6 months post the birth of my daughter. It was all the time under control, except for one episode in oct 2012 wen it showed as a red mark again. I went to an endocrinologist who said that the diversion is not remarkable and didnot change my thyroid dosage. I started having fatigue, skin issues, hair issues, a little bit weight loss and I went again to a different doctor who immediately reduced my thyroid medication dose ( he mentioned my dosage should have been reduced 8 to 9 months ago!) He also mentioned that in a few months I should notice reversal of the side effects caused due to thyroid. But it didnt happen..rather in 4 months I got diagnosed with TNBC. I know another woman who was hypothyroid, got diagnosed with TNBC, had a recurrence after 5 years as bone mets and unfortunately is no more. I am getting more and more sure..there is a strong link between hypo/hyper-thyroidism and TNBC. Pls read the link below
http://hypothyroidmom.com/is-your-thyroid-killing-...
But for women like us who have thyroid issues ( hypo or hyper) and TNBC... is there any other treatment or trials going on??
also
there is a link I am posting here from MD Anderson website, which says that only 40 percent of TNBCs respond to chemotherapy. Can anybody provide some explanation? does that mean 60 percent TNBCs will have a recurrence. TNBCs are usually known to respond well to chemo.
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wow, this possible connection has me thinking. I was diagnosed tnbc last jan. I was diagnosed with hypo in November. I do suspect I may have been hypo for over a year as I had so many symptoms but my doctor just fluffed it off and blamed getting older.
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I haven't commented in a while but read often! This is the easiest way to update everyone...
wwww.katebeatingcancer.blogspot.com
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InspiredbyDolce - I hope my experience helps someone else make a smart decision when they are first diagnosed - there are so many options these days but yet too much information for the mind to consume! Everyone is different and you just have to be smart and go with your gut and what you can handle. It's bad enough we all find ourselves in this situation but to have to make decisions on top of it is mind boggling and live with "did I make the right decision"? I just have to get my head out of the clouds and move forward and be happy I have a full life, a great husband and two wonderful sons.
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My Onc said chemo reduces risk of recurrence by 30%. He further mentioned that means 30% of the TNBC population responds to it. I had always previously thought it meant everyone had a 30% risk reduction if administered.
LP: I too agree with going with your gut. When faced with multiple choices on one thing sometimes our instinct can provide clarity or at the very least introduce additional communication needed to make a decision.
Prayers for Bluebird ... she is back in the hospital being treated for pneumonia.
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LP: What makes you regret not just taking them off back then? Did you have reoccurrence? What treatment did you do? I am trying to help my mom decide what to do to treat stage 2 grade 2 tnbc. She has had a lumpectomy so far. I just want to be knowledgeable to help her if she wants my help. I know the treatment decision is killing her, she does not know what to do:(
Inspired: 30% of TNBC's respond to chemo? Meaning only that percentage of them actually have reoccurrence prevented directly because of chemo?
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OK, so this 30% issue means that we all have a 70% chance of recurrence??! Great! My Onc told me if I did chemo that I had about a 78-81% chance that it wouldn't come back. Is this figure just BS?!! Now I'm scared!
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I think this 30% number is confusing people as to what it means. The number that an MO told me in the beginning is that about 30% of TNBC people getting neoadjuvant therapy will have a pCR (pathologic complete response). Other people (like me) do respond to chemo, but don't get a full pCR. I had a small amount of residual cancer left in two nodes after chemo, my primary tumor was completely gone due to chemo. My MO says I have around an 85-90% chance of survival now. If I had pCR, she would have put that chance of survival up to 95%. I hope that clears things up a bit.
Here's an interesting article about a new approach for us TNBC gals.
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The decision regarding mastectomy v lumpectomy plus rads (if such a choice exists for a particular individual) goes around and around on various threads. There is no difference in outcome, whichever you choose - ie whether you get a recurrence does not change. I just want to caution us all to do research, talk to our doctors and do what what is best for each one of us, and not be swayed too much by anecdotal information we receive on these discussion boards. None of us are experts, and mostly we are simply talking about ourselves.
Unfortunately, too many people believe that a mastectomy removes all breast tissue - that is not possible. There will always be a few cells left. Many also believe that a mastectomy means there will be no chance of recurrence. That is not so. I hate to think that some of us go through a BMX under "false pretenses" believing we are removing all possibility of a recurrence, be it near or far.
Perhaps Luah will chip in here with her knowledge.
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Hello ladies! I'm new here, but have been reading this board for a few days. I'm very new to all this, as I'm only a month out from my surgery. I chose lumpectomy after careful consideration of all of my options. I decided I wasn't ready to lose the girls yet. If I need to later on, well, so be it. But three different doctors all gave me pretty much the same stats...and all told me I was a good candidate for breast conserving surgery. But we all need to make our own choices and be comfortable with them.
Now, I'm facing the start of chemo, which has me a bit nervous. I had my port put in a few days ago and have picked up all the anti-nausea meds, ect. that my MO ordered for me. Monday is more blood work and then start my chemo on Wednesday. My chemo class was helpful, and they told me that the ACS volunteers come in every week to check on new patients. They offer free wigs-whoopee!
Seriously, everyone at the cancer center where I will receive my treatment, has been super helpful. I just hope I'm not going to see many side effects. Wish me luck.Hugs to all, lilyrose53
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Lilyrose, Welcome to a group you never wanted to join! You will find support here, and information, laughter, and will never cry alone.
Good luck with Chemo. It affects us all differently, hope not so bad for you. Try not to be nervous, sounds like the staff at your cancer center are caring and they will take good care of you.
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Im not sure about your conclusion if that is exactly what he meant. I will try to research for all of us. I know of people who have gone over 26 years surviving TNBC without chemo (NoniJones) so even without pCR survival is possible. Ask your Onc what it means if 30% reduction. I think other factors can influence survival so if someone didn't have a response to chemo they might still not recur and those who do have a pCR could still have a risk factor.
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HI DaughterOfaTN - I am so sorry to hear your mom having to go through this but having you around seems like she is in very good hands.
I actually didn't have a recurrence from the original BC but ended up with a totally different cancer. In 2003 I had breast biopsies in my right breast that were inconclusive. My breast were so dense I ended being bruised from my collarbone to my waist from the doc trying to get the biopsies done. In 2004 I had invasive ductal carcinoma stage 2 (not sure of the correct terms) in my left breast so had a lumpectomy, chemo and rads. In 2013 after my yearly mammo, they saw something in the right breast so I had an ultrasound, breast mri and biopsies and they still didn't know what it was. I was given the choice of a lumpectomy to see what the path reports would come back with and if it was anything they said I should go for the mastectomy so I decided why go through a lumpectomy when in the end I may end up with a mastectomy anyways so I decided having both off would make sense seeing I already had BC before. Well I am glad I did go with the double mastectomy because this time around it was TNBC. I was told that I would not get breast cancer again but there is a very small chance that a few cells could have escaped and may pop up somewhere else in my body. I am going with that small chance and trying to live my life as normal as possible if having gone through this there is any sense of normalcy afterwards. We are all different and have to make our own decisions and I don't think I made the right decision back in 2004 but I am still here and am thankful for that. I also had to go through chemo again but no rads. I had the tram flap reconstruction the same time and after a year I am still not back to normal. I am in my 50's, feel young and have a busy life so not having reconstruction was not an option for me. Would I have done the tramp flap again instead of implants I don't know. It was a personal choice I guess but not realizing how long the recovery was going to be, not sure it was the right choice.
Good luck with your mom - I am praying she gets through this and kicks it's ass.
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Lilyrose53 - praying for you and it really does sound like you are in the right place and they are taking very good care of you.
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Hi - I too was told that if I went through the chemo there would only be a 7-9% chance of it coming back but if I didn't go through the chemo there was more of a 20% plus chance it would come back. For me I would recommend doing whatever it takes. Good luck and I am thinking of you.
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Lilyrose, welcome! Have you also joined the chemo thread for April 2014? I joined the chemo thread for the month I started (Sept. 2013) and it has been a wonderful source of support as well. This TNBC thread and my chemo thread are my two favorite threads here. Wishing you the best with chemo. What will you be doing in terms of chemo?
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Meadow - Thanks for the warm welcome! Ya, I'm still a bit nervous, but everyone tells me the anticipation is worse than the actual treatment. We'll see.
LPBoston - Thanks! I'm hoping for the best and I will take all the prayers I can get!
simplelife4real - Hi! I think I met you on the TNBCfoundation boards? I love your name.
Yes, I joined the chemo thread for April 2014. I am supposed to have A/C DD every two weeks 4 rounds. Then on to Taxol weekly for 12 weeks. I will also have rads. I'm just freakin nervous about the side effects...I have a phobia about throwing up. Did it every.stinkin.day of my first pregnancy. ugh. I'm hoping the meds they give me work! I wish all of you ladies the best! Hugs, lilyrose53
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Regarding the misclassification of receptor status, GenOptix has the most advanced testing available to date, for the accuracy of receptor status testing regarding ER/PR status. If anyone is concerned of an inaccurate result with ER/PR, then you might want to consider the GenOptix testing. I had it done to confirm the TNBC status. Here is the link to their website:
http://www.genoptix.com/nexcourse_breast_ERPR.php
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simple: i guess you are right. By 30 to 40 percent MDAnderson website meant what we know as Pcr.
30 percent of us will have a complete response to chemo. That is 30 percent will achieve a Pcr who opt for neoadjuvant chemo.
The ones who just had surgery and didnt do a chemo, depending on the stage etc there is still a small percent of chance of survival ( that is if the cancer never spread and the surgeon did a good job of eliminating the entire thing out)
10 to 20 percent of tnbcs will have no response to chemo ( there are a few subtypes of tnbcs which are highly chemo resistant)
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We were talking about chemotherapy risk reduction, and what does it mean? I found this Q&A article about Chemotherapy on a health website. This is chemo in general, not specific to TNBC, but I'm posting it here for the general understanding of how chemo can reduce risk:
"Breast Cancer Chemotherapy FAQ"
In regards to if chemo reduces our risk by a certain%, does that mean every person has that same %? Here is an article that shows how these %s translates. I think it's beneficial if we know what our recurrence risk is before chemo. I know Oncotype figures that out for ER+ women, and so perhaps we do need to know what our recurrence risk would have been prior to chemo to understand what our survival rate is increased to with chemo.
"Breast Cancer: Making Sense of the Numbers"
Excerpt from above link:
"How does treatment change the odds of survival?"
"Chemotherapy, radiation, and hormone therapy can help more women survive breast cancer. Because these therapies also involve side effects and additional risks, they are not used in all cases. You may have a chance to decide if you will get certain treatments. It is helpful to understand how these treatments affect your chance of survival.
Let's say you hear that a certain treatment reduces the risk of recurrence by one-third. This means that if 30% of women in your situation were likely to have a recurrence, then of those who took this treatment, only 20% would be likely to have a recurrence (one-third of 30% is 10%; 30% minus 10% is 20%). The greater the chance of recurrence at the start, the greater the benefit of the treatment. If your stage gives you a 95% survival rate (5% recurrence rate), you might decide that treatment does not change your risk enough to make it worthwhile. For instance, in this example, a treatment that reduces recurrence by one-third would change the 95% survival rate to 96.5%."
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Hi everyone! Chiming in regarding the LX vs BMX, this is what my Breast Surgeon told me, and I confirmed the information with my Oncologist. Before I had any surgery, and when the only thing we knew was the approximate size of the mass, my Breast Surgeon said that with the BMX, the risk of local recurrence goes down from 10% to 2%-4%. He said prognosis is the same with lx or bmx, but risk of local recurrence goes down. After surgery, and after several tests were done to confirm that I was TNBC, I went back to them and asked what my %s were, now that I had been dx'd as TNBC. I was told with TNBC as my diagnosis, that my local recurrence risk was reduced from 15%-18% to 10%. When considering treatment, whether it is surgery, radiation, or chemo, I always recommend asking what % of risk reduction do you gain by a particular treatment. That knowledge can help you make a better informed choice, and one that's best for your particular case.
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Tekwriter - I loved your idea of how you are going to keep articles you come across in a binder to take with you to your next appointment. That is such an organized way of doing things, and you will know exactly what you want to discuss with your doctor. Being organized and keeping a list of questions is so helpful. I still make a list between appointments to ask my Onc - the list is becoming shorter for him (and I'm sure he appreciates that).
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Lilyrose, I use the same user name on all my "public" threads....so, yes, that is me!
I also make a list of questions before each doctor's visit. If I have a long list, I actually print two copies of it. One for me and one for the doc so we can both see all the questions at the same time. My doc's seem to like that. I have also brought in copies of pages from clinical trials and articles that I have questions about. It does help to move the conversation along and keep things focused. Very rarely do I walk out thinking "oops....I meant to ask about that!"
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Dolce, I am still learning about TN, so forgive what might seem basic questions. So in reading your explanation do I see that the % chance of re occurrence goes down?
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Simplelife4real, What a great idea! I think I will steal that one from you. That way my dr and I can be on the same page! LOL These boards have been such a great source of good information. Thanks!
Hugs, lilyrose53
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Hi Lilyrose, welcome! I'm pretty new here, too.
Regarding LX vs BMX, I wanted to contribute this info. I actually just had a conversation with my BS about it yesterday. I took her 3 pieces of literature (below). From my research, the risk of local recurrence might be slightly less with LX because of receiving radiation therapy. So my question to my BS was - even though I'm node negative and having a BMX, should I consider radiation? She said that there is some data out there that shows those with early stage TNBC who have radiation do, in fact, do a little better - but she said it's very slight. The risks of radiation may not be worth the few percentage point drops in recurrence. I'm meeting with a rad onc at the end of the week to discuss the studies and make my final decision.
I know this isn't exactly what was being discussed, but I thought I'd mention it.
http://jco.ascopubs.org/content/29/21/2841.full
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