Calling all TNs
Comments
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BanR - I can understand how testing negative would be frustrating as it still leaves the big fat question of why, but I'm so very glad you're negative and won't have to worry about removing ovaries and/or a hysterectomy!
Meadow - what a beautiful granddaughter you have!
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Well happy 35th birthday to me....my 43 year old sister was diagnosed with breast cancer today. Just can't catch a break this year! In June I'm diagnosed at 34 out of the blue, we have little family history of any cancer and I end upBRCA1+. My sister had a genetic test done after mine and tested positive as well. Her OB sent her for a breast MRI instead of a mammogram and it showed a small spot that was biopsied last week and called and they said was cancer today. She didn't know what questions to ask so she didn't get any information from the pathology report. Her OB is sending the report to my breast surgeon who she's meeting on Wednesday morning and my mom is going with her just like she did with me so I know she'll get all the info. So frustrated and upset right now stupid cancer!
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Julie, so sorry about your sister! Having both of you going thru this at almost the same time must bring out so many different emotions...and your MOM, she has to be strong for you both. I know this will bring all of you into a tight bond to fight for the restored health for both of you. I am so glad your sister's BC was caught earlier because of your own diagnosis ...that's a blessing. Please send a super big hug to both your mom and your sis, and one for you as well.
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Thank you Ally, she is my precious angel!
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Thank you Meadow. My mom is very strong for us I know she'll get my sister through this too. My mom has always said everything happens for a reason even the bad stuff. It's true my sister may have gone undiagnosed if it weren't for my own diagnosis, I am grateful for that!
p.s. Your granddaughter is precious!
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Julie
I'm so sorry about your sisters diagnosis. Completely agree...... stupid cancer!!!!! I'm thankful for the dr's recommendation to get the MRI. Please keep us posted on how things are going for her. You, your sister, mom & family will be in my prayers. Keep those boxing gloves on. You guys got this!!!!!
Much love, hugs & prayers,
G
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JulieAggie03, that is a terrible birthday surprise, so sorry to hear the news about your sister. But, also glad she got an early diagnosis as a result of what you've been going through, so perhaps her recovery will be much easier than it might have been.
Meadow, that's one serious cutie!
BanR, I also had completely clean genetic testing and no family history, which on the one hand is maybe good news for my daughter and nieces but on the other, what causes this, then??? Someone needs to figure that out.
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Thank you everyone and NotDoneYet for the birthday wish! I know any birthday is a good one it means I'm still here!
I am thankful she had the MRI instead of another mamo, she has had 1 or 2 mamos since she turned 40 and nothing had showed up, she was do to go again this month, she does have very large dense breasts so the MRI was the best thing for her to get.
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So much to catch up on! I've been trying to be "normal" since finishing treatment but that is easier said then done... It's very strange going about my daily routine and everyone treating me like I had the flu and now I'm all better....
BanR, I'm in the same boat! Not positive for any genes but BC at 30 and I'm a super healthy freak... It's frustrating not having something to blame but I'm also thankful my daughter doesn't have to worry...
Julie, I'm sorry about your sister! That is really tough! I am so glad they caught it early! And Happy Birthday!
I hope everyone is doing well! Xo
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Julie - so very sorry to hear about your sister's diagnosis. As others have said, thank goodness she caught it early with the knowledge of your being BRCA+. Sending thoughts and prayers to you, your sister and family.
Lillie - I was just telling my husband the other day how odd it is that no one talks about me having cancer anymore...but on the other hand would I really want them to if they did? Unless you have direct experience with cancer, meaning yourself, a spouse, or a close family member, I think it's just impossible to relate. Everyone is so busy these days and I hate to say it, but social media and the news desensitizes things like this too. So many gofundme's for cancer warriors (all well-deserved of course!) and so many stories about cancer in general. It's everywhere and becoming all too normal to come across, which is so incredibly sad. And I think most people see cancer ending in one of two ways...really good or really bad. So for us that fall into that "really good, cured, cancer free" group, they think it's all over and life is awesome. When in reality, yes that's true to an extent, but we're also left with an aftermath of symptoms, anxiety and an adjustment to a new normal. I guess what I'm trying to say is you're not alone. I think everyone feels this way at some point after treatment. Sending you hugs.
And speaking of BRCA...I found out my husband's aunt is BRCA1+. She's not directly related to my husband, as she was an aunt by marriage and they're now divorced, however, she has a daughter, which would be my husband's cousin. She's 30 and has never been tested! She's watched me go through my battle, knows I carry the gene, knows I had a prophylactic BSO/hyst after treatment...and she still hasn't been tested. I messaged her and told her I would have given anything to know prior to being diagnosed. I sent her all the info I sent my own family after finding out and explained she has a 50% chance of carrying the gene, etc. Her mother has chosen surveillance only, but she herself has never even had a mammo. I'm sick about it and want to drag her to my genetic counselor, but my husband feels I've done all I can do and it's up to her at this point. I just pray she at least, if nothing else, starts surveillance.
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Ladies,
I am sharing, because I get questions in my inbox about how I am doing often; which is lovely.
My apologies for not sharing sooner, but life does get busy with trying to stay healthy, managing a family, and trying to have a social life (if that's what you want to call it).
I recurred back in Jan-2014, and I started chemo Gemzar/Carbo.
I then decided to switch to an immune-therapy trial at the NIH in the Washington, DC area, and I am now in remission. I didn't switch because the chemo wasn't working, I switched because immune-therapy was pushed as the cutting edge of cancer care.
The study medicine I am taking is Olaparib. It is a pill and there are no side effects what-so-ever. At least, I am not experiencing any. I am still taking Olaparib, and being monitored by the NIH. I hope my sharing can help someone with making treatment decisions.
By the way Fighter_34 turns 40 this month!!!! At the beginning of this journey I never thought this time would come for me.....
I want to wish everyone a relaxing winter holiday season and continued health.
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fighter - i love it when you check in. xo
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There is a scientific research institute here in Huntsville, AL. Their name is Hudson Alpha. They perform medical research. They are providing genetic screening for women city wide! As a result, Huntsville, Alabama will be the first city in the United States to offer community wide genetic screening for women...at no charge! There are age parameters. But, even those who don't meet the age requirements can still get the screening for $99.00. Hats off to Hudson Alpha!
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Hello, everyone!
I had my 14 of 16 chemo treatments today and will find out from my MO on Friday if that will be the last. We are trying to balance the risk of recurrence with the risk of permanent neuropathy. So....maybe I'm done? Then rads and ovary removal.
@Ally - I tested BRCA1 positive and explained the whole deal to my family. Everyone has turned up negative except for my youngest brother who refuses to get tested, says he doesn't have time. I told him to make sure to,start getting prostrate checked immediately and often, but of course he doesn't go to the doctor either. I know I can't do anything more, but ARGGH! Saw him at Tday with the whole family and used superpower restraint to not mention it once.
ALHubby - that is so great to have such a community resource!!
To everyone that is past the active treatment and still checks in, thank you for the good news. I really appreciate the hope you bring.
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congratulations, Pea! How is your neuropathy now? I found that mine got better for a couple of months off, but I do have some residual neuropathy in my feet. By the end of chemo, my hands were significantly affected, and I could barely hold a pen or a mug. I dropped many things. Now (last chemo in June), my hands are just about normal, with just a teeny tingling in my thumbs and index fingers.
You've got this!
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Congrats Peabrain (probably) for finishing that part! I am about 6 weeks post taxol and my neuropathy is so much better. I have some wrist braces for carpal tunnel that used to bother me a lot a few years ago, and I am now sleeping in those because I was waking up multiple times a night with numb hands (the carpal tunnel braces force you to keep your wrists straight), so if that is something that bothers you it might be a solution.
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Fighter - great to hear from you! My BS thinks Olaparib will be the next big breakthrough for TNBC and it's so wonderful to hear it's working for you!!! Sending you much love and warm wishes.
AL - wonderful news!
Peabrain - GRR, so frustrating! I don't know if I'll be able to let it go either. Even if I offend her, I'd rather that than the possible alternative. On a better note, YAY for making it to #14!
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Pea
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Hi all, I am on the hunt for some advice before I see my Breast Surgeon on Monday. My situation is this. I've completed chemo and then my surgery last month, which was BMX with immediate DIEP reconstruction and ovary and Fallopian tube removal. Basically, my treatment plan has finished and I am trying to find my new normal. I saw my MO today and whilst she would like to see me every 3 months to start, I will not have any scans unless I present with a symptom/ concern down the line that needs to be followed up. I haven't had a pet scan or cat scan or anything during this process and I won't be having one now as my lymph nodes were clear and she doesn't want me to go through the extra scanning.
She did mention that when I see my BS on Monday, she might want me to have regular MRI's to check for anything on the chest wall etc but she thought this was unlikely.
Is this normal? I'm in Australia so maybe they do things slightly differently here.... I seem to remember hearing from people that have yearly scans even after having a mastectomy.
Thanks as always X
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Hi cassylou. I am in Canada and I had a scans right at the beginning of things before treatment as I had headaches and also a palpable lymph node.....that will be it tho. I was told exactly the same as you regarding scans only being given if there are mets symptoms. I think in the USA there are more liberal with post tx scans.....also if you had negative lymph nodes it is less likely to have spread beyond the breast
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I am in the US and had lunch with my friend who is a 10 year TN survivor yesterday and I asked her this very question about scans. She doesn't get scans as her doctors feel that scans expose her to more damaging effects like X-rays and dyes etc that aren't good. She does get blood work every 6 months.
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Ally, no one in my family will get tested either. They had a front row seat so know. Ive stopped asking and encouraging. They're life their decisions.
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Thanks everyone for the encouragement and info on the neuropathy!
Mine is sort of midrange in the grand scheme of everyone's experiences, it has gotten up to my ankles and my wrists, mostly just numb. My fingertips bug me the worst, like someone hit each one with a hammer and then left the pressure on. And the Taxol has loosened all my nails in the beds, so it's a delightful combo effect. It takes five minutes per button and holding a pen is tricky, my handwriting's gone to hell. I think the numbness in my feet makes me unsteady, but it is also the anemia.
I am hopeful it will all fade into an unpleasant blur after chemo.
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Hi All,
I am, again, very far behind on responding, although I have been keeping up on reading.
Figured I'd chime in and join the 'no scan' people. My drs have not yet mentioned having any.
As for neuropathy, - mine is just about gone, but while I was in treatment the onc suggested eating foods high in magnesium to help. I developed a liking for mangoes, and perhaps that helped!
Now if I could just get my hair to grow in like real hair instead of thin wisps!
Meadow, - your grandchild is a real cutie!!
Although I havent written lately, I think of everyone here often and send BE WELL wishes!
I am running off now to PT, which I recently started because of lack of range of motion and discomfort from lat flap procedure. It's getting better!
Hugs to all here!
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I haven't posted here much but have been reading along. I was wondering if anyone who did DD taxol stopped early and didn't do their last dose. I go for my final chemo next wed and have had increasing neuropathy since the first dose. After the 2nd dose I had decreased urination which I read can be a symptom of bladder neuropathy. Anyone have this? I told my mo last week at my 3rd dose and he decreased the taxol to 60%. I am scared to not get the last dose and have a reoccurrence and am scared about the issues I have with neuropathy becoming permanent. Anyone had a similar experience?
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Hi Shopgal
I did not have my last dose of dose dense Taxol. I had a scan afterwards and it still showed residual tumor .8 mm but then after I got my pathology report back from bmx it was just scar tissue. I had a complete pathological response. Hang in there. Stay positive. :-). My neuropathy is almost all gone. My left hand is the worst. But it has gotten better.
Hugs
G
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thanks. I was spinning today and worrying myself into the carpet. I am feeling better. Some days I get freaked about this disease.
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Add me to the no scans post treatment group. The way my BS and onc explained it to me is that survival times are the same for those who find mets early as opposed to those who find it after symptoms present. I hated the idea at first, but now find it less stressful.
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