Calling all TNs
Comments
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Wow, Monica! Glad you're back, but what a horrible thing to go through! And what if you hadn't persisted until someone listened to you?! I assume the port is gone? I've been told I can get mine out between chemo and surgery.
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Monika, so glad your new doctor listedn and that you are back with us!
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Monika...what an ordeal, so glad it turned out well. I was told I couldn't start chemo until I had an echo cardiogram. Also, I hope your new doc is sending a report to your other doc. Maybe, he/she will listen to the next patient.
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Monika, I am so glad you finally found a doc that listened to you!
About the birth control/HRT link -- I took the pill for appx. 14 years. I had a complete hysterectomy at age 46, and took HRT for 3 years. Research was just coming out then suggesting the link between HRT and breast cancer, and I remember asking my ob/gyn about it. She basically pooh-poohed the research, mentioning that most of the trial participants were in their 60s-70s, so of course they would have a higher incidence of cancer. Three years later she refused to write HRT scripts anymore. I really wish I would have questioned her more closely at the time.
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Monika:
Thank God you switched doctors. So very sorry you had to go through what you did, and thankfully, you are alive. That is just so deplorable that your doctor didn't do what every other doctor considers mandatory, and that is either the MUGA or the Echo prior to the A/C. He should be hung by his you-know-whats.
Linda
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Monika - what an ordeal, I am so sorry you went through that and I'm glad you didn't second guess yourself and found a new doctor that listened.
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Monika: Thank goodness you pushed for an answer. So glad you found out the reason for the shortness of breath and that you have a new doc.
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I thought that the HRT was responsible for er+pr+ postive cancers? Or am I'm wrong???
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monikav - all I can say is WOW!!!!!!!!
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Pamela - I love reading your posts!
MonikaV - OMG!!!!! That's scary, I'm so glad you pushed for an answer and that you are ok.
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Titan: since ER PR + cancers feed on estrogen and progesterone, that would certainly make more sense. Needs more study, for sure, before any conclusions.
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I have been lurking on this thread and am amazed at how many of us there are. I was dx at 43 no family history. Golf ball exploded in my chest overnight was 3 months overdue for annual mammogram nothing there and then pow 3.5 centimeters. Had left mastectomy then 4 rounds of TC then had a prophylactic mastectomy on right. Did do reconstruction after 2nd mastectomy went the implant route. Did convince insurance company to cover BRCA testing it was negative. Was on depo shot for several years and unfortunately research is saying birth control can and does cause TNBC.
Who knows its all a crap shoot but told my 18 year old don't really want her on it.
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MonikaV - Holy Cow!! So glad you listened to your body and saw another doctor. Thank goodness are with us and so sorry you had to go through that!
I too did not have a MUGA or Echo before my AC treatments? No one has even mentioned them to me - hmmmm.... what is a MUGA?
Thanks for the words of encouragment - it just seems like Oct. is soo far away! I just want to be done with treatments! ;-0
jax65 - thanks for the link! I was on birth control pretty much from after the birth of my daughter until now so 22 until 37 yrs old! Because I am BRCA1 pos. the drs. put me on birth control thinking it would help not realizing that I would get TNS!! o- boy I don't want my daughter on birth control!
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kad--a Muga Scan is a nuclear test to assess heart function. I had an echo before chemo and another at the end of chemo to check for any damage which might have occured during treatment. Fortunately, there was none.
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wow I thought a muga and ehco are standard before chemo is started. So glad you pushed for answers. How scary that is!
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Me, too, Jenni! Especially since Adriamycin has caused a lot of heart problems with patients, some irreversible. I think it should be standard practice to do heart checks pre and post chemo, and especially if you're getting Adriamycin.
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When I requested my records from the Cancer center where I received my treatment, they said they had no records of my pre-chemo tests. I think I'd like to try again, but I wonder how long they must keep the records on file.
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I had an echo but not the muga...haven't had anything since but they ask me about shortness of breath and check my ankles for swelling.
I thought something like this was standard too..your onc. screwed up.
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Wow, so many posts here and it's so late and there are too many to respond to, so I will just put in my ten cents worth. The most important thing that we can do to survive this ordeal is to begin to listen to our bodies. If you don't feel comfortable with a dr, with a decision, if you don't feel right and no one is listening it is so important to speak up. I know that I am not alone as I have just read and in the past have read many of your posts--we have to listen to our gut and keep pressing for better care, for better answers, and sometimes we have to learn to ask the right questions. Pamelajo, no doubt your cancer was from environmental exposure and the ladies here that took BC pills that resulted in BC--from reading polls on this it seems that we get cancer as an inheritance, from pills or from our environment. It also seems that once we get it we have to be vigilant for life. Yes, our blood is thicker, our body temp is lower, our Vit D is out of whack--these are all signs of having cancer. We all have to become fighters. Sorry, it's late, I'm ranting, time to go to bed.
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I had an ECHO before each treatment. Matter of fact, my last echo was done the day before my last treatment so a cardiologist would have time to read it. Ejection Fraction up 5 percent, but I still declined the adriamycin. No thank you Sir.... I'll take my chances with BC coming back rather than KNOWING I'll have heart problems.
It's a no win situation, but sometimes even losers get lucky.
I'm not going to blame my bad luck with cancer on anything in particular. Environmental, birth control (didn't take it), HRT, acid rain, pink hostess snowballs, recycled toilet paper, or body lotion. Like MBJ said, you just have to listen to your body. If you feel something, don't stop asking for it to be checked out, especially now.
One thing I have learned though Ladies, is this: Now that you have HAD cancer....... doctors are ready to listen when you come up with a symptom that COULD be cancer. They hop around here when I have the slightest bump lump or whacky mole. No waiting Ma'am, to the front of the line with you. Thank you. But, if you don't have a doctor that listens immediately, find one that does. Tons of em out there. I have two family doctors....... why two? Well, one is for colds and kids, and kids colds, and allergies, the other is for lumps bumps and whacky moles, also for yearly blood work, physicals, and such. The "cold" doctor is a family friend who my kids have went to since they were infants. My "lump" doctor has been my doctor since I was a teen. He knows me........he knows my anxiety level and how much bullshit I can take before I spazz out over that there whacky mole that has been there since birth, but I think it just might be a little darker/lighter/whackier...... and he doesn't judge me. I don't yet have that sort of trust with my Oncologist. Hoping for it eventually, but we haven't bonded yet.
TNBC is scary, for sure......but if you listen to your body, inspect yourself regularly, and keep those all important dr's appt's, it will be kept in check. This is my second go round with BC, and both times I've caught it in its earliest stages. You all will too should it rear it's ugly mug again.
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hello girls had a ruff week this taxter is kiking me in the but i just keep thinking two more then done with chemo.
Pamelajo thank you for your post i get alot from them
Kelli we can do this i so dread every treatment but i know ill fell better soon and its working mine has shrunk almost to nothing do like Pamelajo said count down it helps.
have a grate week girls we are gona kik but!
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I remember begging my docs not to make me take the last Neulasta shot, they agreed but let me know that it wasn't in my best interest. I reluctantly went ahead with it. I read in my records that "the patient is extremely tired and ready for treatment to be completed" or something to that effect. You girls can do it, you really can!!!
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I had to be dragged to my last two Taxol infusions. I knew what was coming in the days after, and I was tired of feeling like crap. On my last treatment everyone was excited that it was over, but I knew I still had 7 Neupogin shots to give myself and several "down" days to get through.
But...I got through it. I knew that I had done everything I could to stay alive. My second diagnosis, of a new primary, ER+/PR- BC came as a total shock. Once I found out I am BRCA 2+ I felt I couldn't trust my body any more. I had a total hysterectomy/oophorectomy to try and avoid ovarian cancer. I knew I would do anything I could to educate my family about their possible BRCA status.
I am very aware that I could be diagnosed again and I keep on top of my medical care. I have a great Onc and see her twice a year and probably will for the rest of my life. 5 years "out" means nothing to me. I have no idea what causes my genes to mutate or when it could happen again. I choose to stay positive and live my life the best way I can...
Linda
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Linda
Did you have bilateral mast.? The cause of the gene is usually inherited from one of your parents, probably the male side your Dad. Did you find out from which side of the family you inherited genes from?
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I had a mastectomy after each diagnosis. My PS told me that a bilateral the first time was "over kill." So much for his 2 cents! I should have listened to my gut.
We get the gene from my dad's side, as his mom died of breast cancer before I was born. Just like eye color, genes can come from either parent. In my case, my dad. My 84 year old dad is from the generation that doesn't want to be "blamed" for us having this gene. My sister and I have each spoken extensively with our geneticists and are pretty confident that this gene came from our dad. My mom's side has no breast cancer, but a few cases of other types of cancers that are linked to smoking.
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I just hit my one year mark or cancerversary on the 19th, the 25th will be the one year anniversary of my surgery. I have always liked my primary dr and just recently had an MRI for my back and they found the usual stuff, but they also noticed a cyst on my ovary. I am sure it's normal, probably from being thrown into menopause from chemo. But..I was really happy with my primary dr's response, she said she was sure it was fine, but given my recent history there is no wiggle room and we should check anything that seems "out of the ordinary", she then made the appointment with my GYN for me (I go to a large hospital/clinic facility). I am really glad that she is keeping an extra careful eye out on me.
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Hi,
I was 43 when Dx in August 2008.
I had been to my Dr (ob/gyn) in February 2008 when I found a lump in right breast. He examined me and said it was fybrocystic change, nothng to worry about, and joked about it being the size of a golf ball and sent me home. Onnly later did I foind out that the mammogram had said because of breast tissue density of there was a palpable mass - ultrasonography would be of benefit - but he marked on the mammo report - stable redo 1 year.
In September (2 wks after dx) I started 4 rounds of DD neaodjuvant AC. Dec 1 had double mastectomy. Dec 29 started 4 rounds of Taxotere),Mid April 30 rounds daily radiaiton, first 2 weeks with a BOLUS to bring the rads closer to skin surface. 4 weeks in had to take a week off becuase of severe burns. Final Rads was June 1, 2009.
TE placed Dec 16, 2009, Exhange for silicone implants May 27.
See Dr every 3-4 months. He only does blood work. I worry is this enough - shouldnt he do annualy PET or something?
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pppinaz - welcome to the TNS thread. You'll get a lot of support from the wonderful ladies who post here. I'm so sorry to hear your doctor didn't follow through initially. You've been through a lot How are you feeling now?
Sherri
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Jenn..good luck with your appts about your cyst..I am going for a pap test soon and I'm not too happy about going..guess an colonoscopy is in my near future also...YUCK!
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LOL Titan, you poor thing. Throw in hemorroids and you've got a trifecta. UGH!
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