Calling all TNs
Comments
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Hi simplelife4real, I was a little confused by your reply, thinking I never said I was stage IV but I am very new to this and only just started looking into it - am assuming stage IV is the cancer coming back. Thank you for your hugs, hugs are the best xxx0 -
Hi Meadow. I am also glad I found you all, it is amazing talking to others who just know. I am going to have as much fun as I possibly can while I am still here and not waste a single moment. A jumble sale is where people collect clothes and bric a brac etc and sell it really cheaply in a village hall or scouts hut to raise money for Scouts or Guides or some local event or charity. It's like a huge charity shop but just for a few hours and much, much cheaper. All the clothes are just piled on tables and you just rummage through them - it is such fun. As a teenager I had the biggest collection of coats which I bought from jumble sales for just pennies - my Mum had to put up a coat rail just for me xxx
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saskia,
Cancer stages run from 0 to 4 usually denoted with Roman numerals.
Stage 4 refers to cancer that has metastasized and appeared in another part of the body. If you search for it on these boards, there is actually an entire separate thread with all women who only have stage 4 cancer if you are interested.
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Radical2Squared
This time last week I was totally ignorant of everything but it is amazing how quickly we can digest information when we need to. I know I need to check out the Stage 4 threads, have been plucking up the courage - it has been an emotional rollercoaster of a week - but I no longer feel alone and today is the day I can accept I am Stage 4 and check it out. Thank you for your support x
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saskia,
Everyone on these threads is here for you.
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Saskia, we are here for you. (((hugs)))
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Thank you ladies, I really feel I have turned a corner today. I am feeling far more positive, looking forward to a girlie weekend with my daughter and friends and preparing myself mentally for the next fight - which I just know is going to be having another line put in under local anaesthetic, but I did it before and I can do it again - and if I am honest, once that line is in it does take the stress out of it as they can put the drugs in it and take blood out of it without any needles - and I would prefer it in my arm again rather than my chest. Just going to deal with one thing at a time and this is the first thing to deal with as my veins couldn't cope with the chemo. It's not such a big thing really and I was quite proud of my Borg implant last time. And whilst I am preparing myself mentally for this, I could do some research into diet - the Budwig protocol has been recommended. If anyone has any other dietary tips, they would be most welcome.
Being part of a supportive group is such a fabulous feeling - this 2nd fight I will not be doing alone and that gives me strength xxx
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Saskia, I'm glad you are getting a line put in. You are right, it will make blood draws and infusions much easier to do. In terms of diet, there is a lot of information out there and I've done a lot of research on it in the past year since being diagnosed. That being said, as far as I can see there is no one clear winner in terms of what is the best approach to eating. I chose to eat as healthy as I can, organic as much as possible. I wish there was a "clear winner." The two things that my MO has stressed is keeping my vitamin d levels up and doing 30 minutes of exercise five times a week. No matter what our physical condition, getting a little exercise, whatever kind works best for our own individual physical state, helps with quality of life. While doing chemo, there were times when 10 minutes at a VERY SLOW pace on a treadmill was all I could manage. Even small amounts of exercise/movement can help us feel better than none at all.
I'm glad you have some fun things planned for the weekend. ((hugs))
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My Onc told me the same thing. Keep Vitamin D levels up, exercise 30 min 5 X week and get on with living life.
Saskia, so glad you found our little corner. Keeping positive thoughts for you.
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Yes Saskia, I second what the girls above say! And....did you find anything good at the jumble sale?
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Ladies it can always be worse I guess. My wife was diagnosed with Stage 1 TNBC on April 8, 2013. On April 9, 2013, her best friend, since childhood, who had never smoked even one cigarette in her life, was diagnosed with Stage 4 lung cancer! According to docs at Johns Hopkins she had a less than 1% chance of surviving a year! Well, that was 19 months ago and she's still going strong thanks to a clinical trial of a targeted therapy. The reason I bring it up and say "it could always be worse" is that just this week that same woman's 24 year old daughter was diagnosed, after a siezure, with a brain tumor! Now mom and daughter are undergoing treatment at the same time at geographically different hospitals. Please pray for them. Let's just all remember to appreciate each day!
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ALHusband Prayers going up and soaking up the wonderful things around me.
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ALHusband,
Thank you for the reminder....
Prayers for both your wife's friend and her daughter....as well as your wife because she is probably feeling like none of this is fair!
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ALHusband, I'm sorry to hear about your wife's friend and daughter. That's horrible! I'll pray for strength and comfort for them. Cancer sucks!!! AARGH!!!
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Did Lostinmo ever post on this thread? I don't know - she was TN. I just learned that she passed away today. I fucking hate this disease.
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oh Tazzy that sucks
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Oh no!! I hate to hear that news!! Prayers for her family!0 -
My prayers for your wife's friend and daughter, ALhusband.
Saskia, you will be in my thoughts and prayers. Please keep talking to us through this forum.
This disease, desperately needs a cure...
Btw, a small piece of news. Cleveland clinical trial for targetted therapy for tnbc,is on its final stages now. Please do check
Thanks for wishing me on my birthday.... I turned 36. There was a time when I used to dread reaching 40 and now I am eagerly looking forward to touching 40...!!! How things change so drastically....
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AMEN BanR! I'm hoping to at least reach 50! I'm 38. I never thought I'd be diagnosed with BC, especially when I was 36! Just sucks! It sucks for anyone though, no matter the age. I'm getting tired of thinking everything is cancer or related to it. I have had a sinus or upper respiratory infection for over three weeks and my mind is going to it's the start of lung mets or something. My husband had it before me and he's mostly over his but coughs off and on. My cough alters between wet and dry. The yellow color is finally clearing up but the middle of my chest hurts when I do cough and the right side which happens to be the cancer side is tight all the way around and has a bit of a burning pain so I'm scared! I had my three month checkup with the Onc last Monday and he said everything sounds and feels fine. I'm like do they ever not think it could be mets? I know I have to trust them but I still worry. I mentioned my badheadaches and he didn't think they were a big deal because they come and go and the location changes. He said the pressure is likely due to sinus/allergies and fluid behind the eardrums, but I still fear the worst. UGH!! I shouldn't have to deal with this at this age, it seems.
Sorry for being so negative but it's been a rough few weeks...
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ALHusband, Prayers for your wife, her friend and daughter. Cancer has definitely changed the way I look at things. Everyday is a gift
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Still shook up about the news of lostinmo as her post in the summer seemed positive.
I.hate cancer
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I am praying for her family now. Has anyone heard more? Gentle hugs and strong prayers to all of you
Kath
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luvmydobies....forgive me as I am still new to this. For us with TN, do they check "tumor markers" or something? Praying for you.....hope it is all cleared up.
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Tobycc, my Onc doesn't do tumor markers because he says they're not reliable. Many doctors feel the same way. My husband told me tonight that his chest still feels tight. My Onc did tell me Monday that some viral infections linger for awhile. He said with my symptoms like coughing up colored phlegm, post nasal drip, fluid behind the ears, etc. not to worry, especially since my husband had it and is still having the after effects too. Plus I have asthma so that can make it harder to recover. So I'm trying not to worry but it's hard. Thank you for the prayers! Don't let my post discourage you. It's just hard sometimes after treatment. I pray for all of us, including you. XOXO!!!
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I hate it every time I hear of someone passing away for TNBC...from any kind of cancer actually. Luvmydobies, I've had a chest cold too and can relate to the "is it cancer" thoughts. I used to be a nurse, so I can logically look at my symptoms and know it's just a cold, but those thoughts would have never even been in my head before bc. Learning how to live with day to day symptoms post treatment, and just learning how to live with the "unknowns" is proving to be a struggle at times. So far, the fear has never been as overwhelming as it was in the beginning for me.
I'm about 6 months out from my last treatment. I wonder if it (the fear) ever goes away.....particularly doing the first five years post diagnosis. I kind of feel like it's in the back of my mind all the time....just lurking there. I rarely cry about it anymore, ususally only when I really dwell on it, but it's there.
My SIL had ovarian cancer about 20 years ago. She told me she kept thinking she was going to die from a recurrence. She never had one. Every few weeks, she would say to herself, "I'm still alive." Finally, she realized she was going to make it. I'm thinking that with TNBC, it helps a lot to get past that three year mark....and it really helps to get past the 5 year mark.
I just try to make the most of each day and be grateful for each day that passes without a distal recurrence.
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Simplelife - beautifully said.
Could use some advice from you wonderful TN ladies. I just had my first follow up mammogram and ultrasound post treatment, which thankfully, came back all clear. I saw my breast surgeon yesterday and her plan is for me to have a new ABUS ultrasound, designed for dense breast tissue (which, of course, I have) in April and then to have another mammogram in September 2015. Her plan may change, but she doesn't think I need an MRI until April or May 2016. I would love to have an MRI in Sept 2015 rather than another mammogram as the MRI is what caught the early TN in Jan 2014. She as much as acknowledged that the Stage 1 probably would not have been seen on a mammogram, and I remember her telling me that MRIs were good at finding "worrisome" areas in dense breasts like mine. I think maybe she's getting away from the MRI because insurance is often hesitant to cover it, and of course, sometimes you get false positives with it.
I would appreciate knowing what recent early follow up mammos v. MRIs have been for you ladies. I'm sure the protocol may differ in different parts of the country. I'm in Northern VA, which is obviously a major metro area.
Thank you!
Paula
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MomMom= My stage 1a 6mm TNBC was picked up on a 3 d mammogram yearly check up. The previous year I did a 3d mammogram and they went back to check that. Nothing was there. I then was called back for a ultrasound. My BS told me if I had not had a 3D mammogram this would not have been picked up until the follow year. I am going for my first scan tomorrow as my MO has everyone get a scan. I have never had a MRI.
I go for a follow up 3d mammogram after radiation in late jan and then every 6 months.I think that is followed by an ultrasound. I do not know how many years I do that.
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I would certainly prefer an ultrasound and MRI as I don't trust mammograms at all to find TN. A lot of women on this site have had mammos within 6 months to a year before they find the tumours themselves.
My younger sister had a mammo 7 months before she found her own tumour and, unfortunately, it was already Stage 4 and she passed away from TNBC. Because of our family history - almost every female on my Dad's side of the family has had breast cancer but those of us who have had the BRCA test have tested negative for BRCA gene mutation, I volunteered for a clinical trial for examastane. Being on a clinical trial meant that I had very intense follow-ups including MRIs and that's how my breast cancer was found, luckily at a very early stage. We here in Canada get all our medical tests, etc. covered by our provincial health care system - thank god! But, apperently, now that I have actually had TNBC, a mastectomy and chemo - I no longer qualify for MRIs. I practically begged my oncologist for MRIs but, apparently the "new and improved" Ontario Breast Screening Program (the group responsible for deciding on testing criteria) has determined that I am NOT at high enough risk! Screw 'em! I am going to PAY for MRIs myself 'cause I am sure that if it recurs, by the time a mammogram may find it, it may be much more advanced.
Sorry for the rant. I have, for the most part, stayed positive throughout this whole experience - mainly because it was found so early and I'm pretty sure they got it all with the surgery and chemo. But I really feel abandoned by this Ontario Breast Screening Program. Luckily, I can afford MRIs but what about those who can't?
Doreen
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Eileen & Doreen, Thank you for your responses. Eileen & Doreen, do you each also have very dense breast tissue? Eileen, You were so fortunate that the bc was caught when it was at such a tiny size - only 6mm - and yet you also had chemo, which is not surprising for TN. There are so few with a TN diagnosis who do not get chemo.I have also had the 3 D digital mammogram, in addition to the regular mammogram, ever since they became available which was 3 or 4 years ago in my area. I gladly paid the $40 out of pocket fee. 3D mammos are especially good for dense breasts - although not as good as an MRI - at least that's my impression.
I was pleasantly surprised to find that this time, I did not have to pay for the 3 D mammo! I was told in the last few months, Medicare, which is my primary, is now covering them. My RO thinks they will be covered for everyone very soon. They should be!
Doreen, I'm with you...If we need an MRI to possibly save our lives, then we should have them, and they should be covered!
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MomMom+ I pay $100.00 to get my 3 d mammogram. Now I will get a mammogram and ultrasound afterwards. Yes, I have dense breast tissue but,my BS told me they are finding smaller and smaller BC tumor with this 3D's. Again,never had a MRI. My MO in Baltimore and here is Florida were both adamant I have chemo. I am going to do 6 rounds .One more left YEAH!!!!!!!!!!! Then 7 weeks of radiation. Both could have cared less the size. They said TNBC gets chemo. I followed their suggestions.
Today I am not myself kinda down I know I am super lucky it was found so early. Just today is hard for me.
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