Calling all TNs
Comments
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RIP Michelle. I know god will welcome her with open arms. May she finally be free of all pain My condolences to her family and loved ones. She was a great lady.
I need some advise. I know some of you ladies have said that your onc wants to know everything that occurs and others that they're giving you the brush off. I think that my onc is giving me the pass the torch to my primary. And he also said that i should stick with my BS that there couldn't be two generals directing the war. But at the same time he wants to know anything that may happen new like surgery etc. I'm confused because I was part of a study and when I joined it they told me they would need to monitor me through chemo and for the next 10 years.
I don't know if to go back to him and let him know whats happening afraid hes going to tell me again that he doesn't need to see me. My relationship with my BS is great. And there's test every 6 months scans in between. But only of my breasts.
I guess I'm scared because no one is worried about the rest of the body. What if it decides to spread to my bones or blood. Who's going to know. I won't be able to catch “the lump“ like i did with my breast. I guess I'm a little freaked of spreading and who's going to figure it out.
I'm definitely going to need a hysterectomy in Dec because of all the past masses they found and all the bleeding. I'm scared of the surgery. I'm 38, I have a beautiful 7yr old daughter and I'm so lucky. But I would have loved to give her a brother or sister and now that can't be. And i feel terrible. Because shes always asking for one. I'm sorry I'm venting. I'm sorry but I guess I needed to say that last part out loud to someone because I've just kept bottled up inside.
Any advise is helpful. Thanks.0 -
Catwhispurrer, thank you for the note. I did not know she refused chemo at the beginning. Ladies, I am sorry about the article if it bothered you as that wasn't my intention. I thought it was some good news as I am not a native English speaker probably did not understand this article completely and my TNBC knowledge is very limited as well.0 -
I am sorry to hear of us losing yet another to this disease....................Rest in peace Michelle. I am thankful that we know that she did not chose to do chemo, because it might help someone else to make a different decision. I know there is no guarantee but as I have been told TN patients need chemo.
Yani just do what you feel is best but I will tell you it was my BS that caught my recurrence. I know how you feel though as my first oncologist just did not do what I felt he should be doing. I am learning the new one and going to be asking for more stuff as it comes. She does not do routine blood work but I am going to ask since two more members of my family have been diagnosed with 2 different types of cancer. If you feel like you are being passed on, maybe you need to check in to another doc. I think they follow us just to see if we are still here....(some of them) from what I have been told though is that blood work really don't tell them anything as far as cancer goes, it will just show if something is off and they need to look for cancer......same thing to me but they sling them words. Best of luck to you0 -
Hi Ladies. I have just been reading your posts. Although I didn't know Michelle and am fairly new here to BC.org I am very very saddened by her passing.....
I'm not sure if I am triple neg. I do know that I am ES and PR negative. I had extensive DCIS with 3 small areas of IDC within the DCIS. They also discovered a previously undetected area of DCIS found in the tissue removed from my mastectomy. Although they got clean margins, they did not get the optimal size clean margin where the new DCIS was because it was so close to my skin. I am nervous about not having any other treatment after the mx. I did see a radiation oncologist and a medical oncologist but they did not think that I would benefit from rads or chemo. Any pearls of wisdom and advice would be greatly appreciated.
Nancy
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Hi all, I am grateful to have benefitted from Michelle's kindness....
also, to anyone dealing with recurrence, you might want to ask your MO about alternatives to Xeloda (platinum drugs, PARP inhibitors , Avastin) as some studies suggest that Xeloda may not be as effective on TN mets as other types of BC. We need more MO's that specialize in TN and not treat us all the same!
Nance
PS Darkness induces sleep (helps the body to make melatonin to sleep). I took a class on brain function and the prof said that for some just the light from a clock radio is enough to interrupt sleep!0 -
Hey Nancy,
I personally would ask more questions because my surgeon got 2" clear margins, and I did surgery and chemo. No radiation and then a little less than 2 years and I got the news that it had returned and so no surgery this time and only in life or death because it went between the pectoral major and minor muscle up to my collar bone in lymph nodes. So, chemo and radiation the second go around. It is just a big catch 22 disease. Ask why they are telling you what they are telling you in everything....
Best of luck to you0 -
Nancyinct, my advise to you would be to get a second opinion. Also, confirm your HER status: if you are HER positive you will need Herceptin. If you are HER negative AND er neg, pr neg, you are Triple negative. From everything I have ever read about TN is that you need chemo. So get busy and get a second opinion. DO NOT be afraid that your current Dr. will be offended by it. Squeeky wheel gets the grease- be your own advocate and get what makes you feel right.I am grateful to be able be outside in the beautiful Autumn air. And to my wonderful Mother....she always has a listening ear when I need to complain about something.
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sorry, I don't think I was clear in my earlier post. I was TN and had chemo, surgery and rads. I researched trials and was in one at Dana Farber last year. The trial I was in involved Cisplatin (platinum drug) plus ACT and another oral. I turned into a research junkie like a lot of us and have read that platinum agent plus taxol might replace AC in the future and Xeloda (which has been the traditional go to drug for BC mets) may not be as effective with TN. Other drugs have been shown to be promising (like PARP inhibitors). TN foundation has some good articles with recent research. I hope for more MO's specializing in TN. Just sharing. Thanks for the concern and advice...
PS Navymom, we're retired Navy and I have a son in the Marines. Tell him thank you for his service and we are grateful, GO NAVY!!!0 -
Thanks, njprn. I also extend thanks for your son's service in the Marines. Where is your fella stationed? Mine is in Jax, FL. Was deployed to Okinawa earlier this year.
I agree with you that the TN foundation is also a very good site for info and education.
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I'm feeling very sad and starting to feel defeated. It's been 18 mo's of nonstop treatment with many more to go. i was so very positive and upbeat, worked through initial treatment, after surgery and during rads. This recurrence and the news of Naan and Michelle just has me so down. I know we all go through periods of depression, but it's new to me. How do the rest of you pull yourself up and start enjoying life again without always thinking about your own mortality. I can't seem to take my own advice.0 -
Jianchi -- don't worry about the post of the article -- there was good news there -- money is being spent specifically for TN research and that is GOOD. I went to my GYN last week for the first time since surgery. He even said that doctors still are just shaking their head over TN, but that research is going on and soon something is going to surface that will provide a targeted therapy.
I didn't realize that Michelle had initially turned down chemo. I went back to her blog site. I looked back to 2010 when she was first diagnosed and she partly based her decision of no chemo on an online tool she had found that told her chemo would only add a few years to her life expectancy. Here is what she wrote:
"The result is that there is a 22.6% death rate from cancer within 15 years. Having no chemo treatment shortens my 24 year life expectancy to 20 years. If I proceed with the CMF chemo protocol, it buys back 229 days. Hmmm.... and that doesn't count any impact from the chemo, like leukemia. I would go through chemo hell for 229 days...doesn't sound like much of a deal to me."
I tried the tool out myself and it told me it would add 2.5 years to my life expectancy if I chose to do chemo. But its a bit confusing (because it said without, it would cut life expectancy by 5 years) and it has several ways to look at it. It also showed that without therapy I would have 77% chance of being alive and cancer free in 10 years vs. 85% with chemo. The tool my doctor used showed (for my specific age and diagnosis) that without chemo I had a 52% chance of being alive and cancer free in 10 years and with chemo that chance increased to 73%. Either way, looking at the percentages shows improved life expectancy with treatment but I definitely like 85% better than 73%. Anyway, we never know whether it will work for us or not, so it comes down to a personal choice.0 -
slowloris - hugs to you. I do not know what I can say to make you feel better. I am afraid that a newbie like me does not have much credibility regarding BC knowledge. I just want to tell you that you are not alone and your feelings are reasonable. I fear a lot of things in this disease as well. I think doing things can cheer you up, spending quality time with family and friends etc. will help you forget this disease and relax. I wish you all the best in your treatment. Hugs to you!
5thSib - I am familiar with the tool your doctor showed you. I was at my MO's today. Second visit. I asked him to show me the tool again as last time he showed it to me, we did not have the information of my lymph nodes yet. I can see from that tool receiving chemo is beneficial to me. I just hope I can take the side effects. Does Dense AC+T starts next week, and I need a lot of positive thoughts. All the best to you!0 -
slowloris I understand how you feel because I took it as hard as you about our wonderful vivacious Michele and feel very depressed. I didn't know Naan so well but each and every passing is a blow. Mainly because we get to know these people so well usually and we love them because they are our sisters but we are unable to stop this happening although I wish we or someone could. It does cause depression but you still have a life to live and the ladies that pass would like you to go on and live this life. It's hard to go on hearing about these ladies and also with worrying about how we are doing but it helps to surround yourself with things that you love or things that you love doing be it exercise, immersing yourself in good books, playing with your grand kids or a hobby you might like doing. The girls would hate it if we gave up because of something we have no control over. Thinking of you and sending a huge big hug.0 -
5thSib - I just lost my mom (Michelle), so there's an emotional aspect to my thoughts here, but I say throw the effing book at it. We try not to look backwards and second guess decisions that were made, but I do feel that if my mom had tried chemo and full radiation with her first diagnosis, she'd still be alive today. She was so worried about what chemo could do to her, but when she was rediagnosed stage 3 and had no choice, she sailed through chemo. She babysat my kids and travelled and chemo did not affect her in any of the myriad of ways she had feared. I know there are people for whom chemo is terrible, but it just wasn't for my mom, and when you're TNS and you have limited continued treatment options... I just wouldn't take the chance. If her oncologist had not been an asshole with a god-complex who ignored her fears and had spoken to her with respect and concern instead of literally trying to bully her into following whatever he said who knows how our lives would be today. I lost my mom to this terrible disease and I don't wish that on anyone else. Hold on to every minute of life you have, take every treatment offered and don't let this terrible disease steal one more wonderful warrior from this world!0 -
LovinMyMom your mum was a wonderful lady who was willing to give anything a go. She was always happy and in for anything that came her way in the way of travel and so enjoyed her trip to Paris. She was also excited about getting her RV. She did love her travelling and she adored her Rick and her family. You must be so proud to have had your LUV as we were all so proud to have known her. I pray every day for a cure for this dreaded disease. Michelle is flying with the angels now and free from cancer at last. I just loved her so much and she will always be in my heart as she will yours. Love to you and your family always.0 -
lovinmymom...thank you for your post. We all loved your mom so much. She was there for me in the beginning so many times. I will always be grateful to her.
slowloris. ..everytime one of our brave warrior sisters passes it does put our own mortality at the forefront of our mind. Allow yourself time to greive and process it in your mind. Cry if you need, scream, rant, whatever you need to do. Then when you have done that--at least this is what i did-- I thought of the ones I love and how I do not want to leave them prematurely so I would pull on my big girl panties and get down to my job of getting better and fighting this monster with all that I have! Warrior mode kicks back in. The ladies who we have lost fought too. They would want us to do the same. I too pray that a cure is just around the corner.
Maggie0 -
Thank you so much Kathy!! My thoughts are with her family at this time.
Navymom-Thank you as well.
Greetings ladies! I am just so thankful to be able to log in and be connected with a wonderful group of women! Life is a gift enjoy it!!!
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RIP Michelle - she was here when I first joined this board, always kind and supportive. She was an amazing lady!0 -
SB and NavyMom, thank you for your input. I think the reason they decided against chemo or radiation was because the IDC was small. There were three areas of IDC within the DCIS measuring 0.1, 0.1 and <.1mm. I'm still very worried that it's going to come back. And I don't even know how they will know if it does come back. I am seriously thinking of getting a second opinion.
Thanks again!
P.S. I'm an Air Force veteran. I service 4 years active duty and 2 years reserve. My nephew just separated from the Army after service 6 years and 3 tours to Afghanistan and Irac.
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Thank you all for your encouragement. Today is better, I've been of meds since Sunday in preparation for surgery, and I think that feeling low physically and mentally from them was partly to blame for my crying jag. I still feel very sad about Michelle, but the fighter spirit has kicked in again. I took my girls window shopping for a new vehicle. Making long term plans seems to help me, and if God wants me in the short term, then I know my daughter (Who will just begin learning to drive) will have a safe car. I only hope that teaching her to drive doesn't take years off my life lol.0 -
I wonder about those tools...since most of us have chemo...how many of us that don't have chemo are there and is the basis on just a couple of women....if only a couple of women decide not to have chemo and one lives and one dies in a few years doesn't that skew the numbers a little...hell I am no math expert but since each and every one of us is so different in our diagnosis and treatments and ages how do we really know what the stats are....
Lovingmy mom..thanks for coming on here and posting...we loved your mom...sorry about the a*** onc...God knows its scary enough to have chemo without someone literally screaming it in your face...that you have to do it...
good news is that I had good news..had the all clear from my onc...how about you Bak? I'm free for another 6 months until the anxiety hits again..but it is all good...I have lots of fun...really enjoying every minute...0 -
Titan- when were your follow ups moved to every 6 months? I have an appt. in Dec which will be my 3 years since end of chemo, but I am currently still on every 4 months.0 -
Tif - my followups were every three months for 2 years and then every six months from that point. I remember being so shocked after chemo and rads for the onc to say I'll see you in three months. It seemed such a huge amount of time after seeing medical staff so frequently during tx.0 -
Tif my follow ups are with my breast surgeon every three months. I wouldn't let him make it longer because I don't see my oncologist now unless a problem arises.
Gilly I felt bit scared and alone when I learn't I would only be seeing my Breast surgeon and not my oncologist every three months but its turned out ok and I can see my oncologist if I feel a real need for it. I suppose I needed to let go and try to get back to normal at some stage.
Slowloris Glad you have now cheered up a bit. I think you are right and its your pending surgery which is making you depressed and then hearing about Michelle was just too much. All the ladies that have passed will always be in our hearts and we will think of them from time to time but I know they would want us to go on and live our lives. Perhaps you could make choosing a car a fun time with your girls \(even though you may be minus your fingernails as I was when I taught one of mine to drive). It took me a long time to make long term plans but I am finally getting around to it. You will have many more years yet because you have to see your girls get married and then their babies come along. So start those plans today and soon your surgery will just be a passing memory.0 -
I was an English teacher for 25 years, and I loved to teach writing skills. With Michelle's passing, I'm reminded of the power of words on paper (or screen). So many of us have expressed the sadness of losing a person few of us have ever met face to face. Michelle was such a special person. I'm so glad I got to know her, even if just on paper.
Grateful for BreastCancerOrganization for helping so many people get through our cancer challenges. Jan0 -
Just a quick question: how many of you here were recommended to do Acupunture? My SO and my survivorship consultant both did. Today I went for the second time in my life (don't even mention I am Chinese :P), and it was so relaxing. Tomorrow I will go to a yoga class that is organized by my medical provider for cancer patients. I hope it turns out to be a good experience!0 -
Special Hugs and Peace to LovinmyMom.
Thank you Titan for some great news!!!
5th Sib, thank you for your post about Luv and I'd like to add to it.
I had to come back to address something that was discussed here on the board.
Someone mentioned that Michelle had started out at such a low Stage at diagnosis but progressed so
quickly. Someone else mentioned that she hadn't taken chemo.
I don't want to scare or worry anyone but in the interest of honesty about this disease, I want to present the truth and reality.
Michelle and I both started at a similar stage. I had a long discussion with her about why she didn't do chemo the first time. (Don't hold me to the exact percentile because I've forgotten, but I know for sure that there was only a 5% difference in the options she was offered). She did her research at her first diagnosis and found that because she was early stage that
if she didn't take chemo she had a 70% chance of no reoccurrence and if she took chemo she had a 75% chance of no reoccurrence. Because of the effects of her diabetes, she decided that the damaging effects of chemo were not worth it for a 5% less chance of reoccurrence.
Now the flip side of this is that despite being at similar stage as Michelle I went for the the whole enchilada, chemo and radiation. My reoccurrence came only 6 months after I completed treatment.
What I'm trying to tell you (as Cocker says so well) it's a crapshoot. The majority of us with this disease will go on to live long NED lives. A certain subset of us (due to more aggressive tumors, age at diagnosis, chemo resistance or any multitude of undiscovered factors) are doomed from the start. This may sound like cruel information but it is the reality of the disease.
Michelle and I had a long chat about letting go with "what If's". I learned from her first decision, made different choices and made out no better than she did.
I just wasn't comfortable with people second guessing Michelle's choices or leaving with false reassurance without knowing the facts of the situation.0 -
jianchi - I went to acupuncture every week starting from diagnosis and am still going weekly. Acupuncture is a great immune booster - my acupuncturist works exclusively with cancer clients andhe is very skilled and has some great success stories. I believe it helped me tremendously during chemo and helped prevent many of the side effects. Now I go for maintenance!0 -
adagio - thank you for your reply. I am glad that acupuncture has been working so well for you. My acupuncturist also works with many cancer patients. I was also told that going during chemo will help boost the immunity. I will begin chemo next week and will be on AC+T as you did. Hope I can get through it smoothly. Wish you all the best!0 -
Kathy - Thanks j0
