Calling all TNs
Comments
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Ladies I know this has been discussed before. So, forgive me for asking because I can't find the discussion. Does anyone know the "official" date you start the 5 year countdown from? Is it diagnosis? Is it from when the cancer is removed (Lx or Mx)? Is it from last chemo? Seems to me the answer kinda depends on who you ask.0 -
peggy, alhusband and debra, thank you for your comforting words. I think the thing that freak me out was the MRI saying a enlarged low right axillary node is concerning for metastatic disease...
I feel better now. Will meet my surgical oncologist today soon. Thank you all for letting me vent, I really needed it.0 -
Al, I know everyone counts their cancerversary different. I count the up to 5 years from the day I had surgery to remove the cancer tumor, however, my cancerversary is from date of diagnosis. So Oct 10th was my 2 year since diagnosis. Feb 8th since my partial mx to remove what was left of my tumor. I did have rads that ended May 17th, 2012.0 -
Please report back Jianchi, we are on the edge of our seats and praying for a good update from you! You made it through the weekend ... and that's so hard!
AlHusband - It depends what the 5 year mark is symbolic of? Is it symbolic of when someone found out they had cancer, and from that minute they count themselves as a survivor? Or is the 5 year symbolic of being cancer-free and so they count it from a surgery date or a treatment date? It could be that you find people count from different points in time, because of treatment and surgery schedules. For instance, someone who had chemo first, might count their 5 year from surgery date. For me, my Onc told me it was from my surgery date, of when the tumor was removed, so I go by that date. I too have seen it vary like you mentioned, so likely it depends on each person's specific case.0 -
Inspired if it's up to each individual...then I say we ALL count from today's date 5 years ago and call us all cured and the last person out of this blog shuts the lights off! Hell, I can dream can't I? And what a nice dream it would be! In all seriousness, my own opinion is that it should be from when the cancer is removed. So, since I can, I shall use lumpectomy date of 4/23/2013 as the starting point! My beautiful wife is now 6 months and 5 days cancer free! Woo hoo!0 -
AL- My oncologist counts from when I was suppose to be "cancer free", meaning from the time he removed what was left of my cancer at surgery, after I did neoadjuvent chemo. So I say I'll be 3 years out next february.0 -
Hi all, Tina, I too am a nurse and got addicted to research which lessened over time. I did neo adjuvant chemo before lx, then more chemo ending with rads ( I did a clinical trial). Try to trust yourself and your docs and the fear WILL get better. Some days will be worse than others but time and distance helps. Just think how many times you reassured your patients. Now it's YOUR turn to be comforted! Personally I think October is tough. If you're affected and especially new with raw emotions, it's difficult to get a break since it's everywhere! Awareness is important but it's "in your face" to those who are affected. Be strong and look to this sight for support because everyone here understands and gets it! On a positive note, I participated in a walk this weekend and met an 18 yr TN survivor! She certainly brightened my day/ month!! It's almost November.... XO Nance
PS the 18 yr survivor shared that she NEVER thinks about BC!!0 -
Wow, your post gives me goose bumps Nance, about meeting an 18yr survivor! That's awesome. I've posted before that there are some 25 year survivors who post about once a year just to keep us all encouraged!
ALHusband, - congrats to your wife and in just a short time we will being celebrating your wife's 1 year with you! With all the dates that are feasible for us to use for the tracking to the 5 year, it was important for me to me to choose the one that reflected the most positive note for me in my continued health and well-being - and that for me was when the tumor was out. When I asked my Onc what date I should reference for that and he said the surgery date, I was in total agreement with him.
Ladies, do you know what the term animal protein is in reference to ... does it also include fish items? I'm asking because much literature that I have been reading lately has recommended limited animal protein, but I don't know if fish is included in that. Then I came across a nutritional article last week that recommended fish 4 times a week. So if fish was part of the term animal protein, where is everyone supposed to be getting their protein from .... in the same literature it recommends little to no dairy. Of course peanuts and beans have protein, but it really leaves a limited amount of low in fat items.0 -
Debra, I was told anything with a face or comes from an animal with a face is an animal protein. LOL My onco puts it into easy terms.0 -
For those of you who asked for the info.. I just emailed 16 of you... I went through the PMs and hope I got caught up with all the requests. If I missed you please PM me which info you wanted. I created a new email account not on yahoo so I'm able to organize and send the information easier. No emails have gotten kicked back either so I think I got them all right.0 -
LOL! Okay .. then it's beans for dinner! PS- I just noticed your quote .. .I love it!0 -
Debra,
What about whey protein? It does not have lactose as milk. I add it to my morning shake for breakfast.0 -
Al..you wouldn't believe how fast the time goes...after treatment you and your wife will be working on getting back to normal..and conquering the se's of treatment....mark the time on how she felt last week compared to this week...it is usually better...maybe not the same aches...maybe remembering how to make that fav dish with all the ingredients...maybe having the same pair of socks on instead of two different colors...! it takes time..but it really does go fast....and you can begin enjoying life again..going out to dinner..having that first real haircut...walking or jogging without pain...actually sleeping....life does get good again and bc will not be on your minds all the time....it will like a nightmare that you really can't remember much about.....I sincerely hope that this happens to you and everyone else on here......0 -
Jianchi...I am so sorry you have to worry about it....for me the rib pain was trunkal Lymphedema. It was helped by wearing a compression tank that I purchased over the counter....its a flexees and it still helps me whenever I have a flair of fluid build up on my LE side.
I count from the day I had my BMX which was the first thing I did in my treatments. My bloodwork done before I started chemo included a CTC (circulating tumor cell) which came back 0 so works for me---2 yrs and counting
Maggie0 -
Thank you mags! My rib pain seemed to be gone today. I was also achy all over over the weekend, then I figured out maybe it was from my flu shot. The rib pain happened before the shot though. I am more relaxed today after seeing my surgical oncologist.0 -
18 year survivor and never thinks of BC.............that is a strong person.....yay for her but wow I wish she would have shared her secret to not thinking about it...........hmm.....I just don't see how it can be done. I know I can't do it....:(
I think it is great that we can share things we need to on here but I do think that not every thought in a persons head needs to come out of their mouth...........if it won't help and will only hurt there is no need to say it and especially when we are all at different stages of our disease. Something that a long time survivor might not find offensive might really offend a new person being diagnosed. I know we all have a right to our feelings but it never hurts to make sure that they are warranted when replying to others and not just venting. It might cause someone to not seek the help they might need here. I know there are some who are going to say well they need to just harden themselves, suck it up or whatever your favorite phrase is but sometimes we just need to not say anything at all.
J I will definitely be thinking and praying for you as you find out what is going on with your rib.
There are many games on the internet to play that takes your mind away. I play a lot of the Facebook games because sometimes I want to think about other things and sometimes I want to just mindlessly click...........just to get away.
wishing everyone the best of luck and a wonderful week0 -
Stupidboob, (what is your real name?) I get what your saying. In commenting to another care and concern needs to be #1. I will say, when I am venting about something that I am scared of or something that is upsetting me, I will not use a filter. It's about me and how I feel. If I ask a question, I am serious in my inquiry. Breast cancer has taken the lives of ladies that have been here- ladies I have come to admire and gained strength from their words while they fought. I cannot censor my words and deep feelings from those ladies that came before me. We are all here to support each other- through every moment of our diagnosis, treatment and yes sometimes hospice/death. There is not any "suck it up" conversation here. It's all about supporting each other through the good and the bad of this disease.
I was a "newby" 2 years ago. I learned so much about my treatment, what to expect, and what to ask my onco from ladies that have now passed away. They gave me strength in their words, and advise. Many of us have left to form separate groups, because of this exact conversation, which is sad. After all this Is Calling All Triple Negative Sisters.. We are here to listen to whatever anyone has to say- whatever is coming our of your mouth at any given time. I am not talking about putting anyone down- it's about venting your feelings, inside and out. For instance- I am 2 years since diagnosis, am now having liver and bone pain. I am scared shitless that this disease has moved beyond my breast to other organs. I have 2 friends I am watching lose their battle- another that is on the edge of dying. I am pissed that this disease has taken so many from my life, and continues to do so. Lets end this conversation about censoring how someone interprets what others may feel from a comment.
Say what you feel0 -
Lory it is Sadie..........and I agree you need to be able to say what you want and feel when venting......what I meant was we also need to remember the gentle touch that is needed WHEN someone ask and we just need to answer with medical knowledge and not scare the crap out of someone when what happened to us might not happen to them SHARE DON'T SCARE. I am in no way saying to censor what you say when you are venting.
I hope that you do not have anything going on with the liver and bones but I totally understand your fear because I have put off going and having my colonoscopy because right now I just can't handle anymore bad news. I am hoping mine is just nerves and my gallbladder and not liver issues.0 -
I am torn - I have shingles, when i looked it up online it says that older people (which I am not) and people with weaken immune systems typically get it. I am all done with treatment and don't think i have a weak immune system now but maybe something is going on that I don't know about that tells my body it is weak. Should I tell my oncologist?0 -
Jenjen I think you should definitely let your Onc know. Not for any other reason than that he should just have that information at his disposal. I'm no doctor, but I think it just "is what it is". I think it's just that you have shingles and you would have had shingles whether you had BC or not. Maybe it originated when your immune system was weaker and is just manifesting itself now. My wife's Onc says he wants to know EVERYTHING about her health, no matter how insignificant or unrelated it may seem to her.0 -
JenJen, definitely update your Oncologist - just as a matter of keeping him in the loop. I agree with AlHusband 100% - about you probably would have gotten it whether you had bc or not.
From WebMD: http://www.webmd.com/skin-problems-and-treatments/shingles/shingles-topic-overview
Shingles occurs when the virus that causes chickenpox starts up again in your body. After you get better from chickenpox, the virus "sleeps" (is dormant) in your nerve roots. In some people, it stays dormant forever. In others, the virus "wakes up" when disease, stress, or aging weakens the immune system. Some medicines may trigger the virus to wake up and cause a shingles rash. It is not clear why this happens. But after the virus becomes active again, it can only cause shingles, not chickenpox.
I hope you feel better soon!0 -
JenJen I hope you feel better and I agree with the others, let your oncologist know just so they know what is happening.0 -
Im really liking NOT talking to him but I kinda thought so.0 -
JenJen, does he have a nurse? You could call and tell the nurse you just wanted to update them. She will pass the info to him... or ... you could wait until they close tonight and leave a voice mail with your update. If it's a concern they'll call you back.0 -
Jen- I had shingles 1 year after finishing all my treatments. I was 39. Our bodies go through so much while in treatments so i didn't question "why" I had shingles. I didn't go see my onc at the time but I just called my onc nurse to tell her I had it. I did go see a doctor to get diagnosed and got meds for my shingles. Everything went well after.
Take care. ((hugs))0 -
I call my Onc every time I start a new supplement. He stays well-informed of what I get into. lol He did tell me only take the probiotic 1 time a day, not 3 times a day like the bottle said (it was 90 billion cultures), so I've come to rely on them to approve my supplement taking.0 -
Stupidboob I take exception to your words. All the ladies that were on here when I joined were wonderful and they certainly knew about the 'gentle touch' and 'don't scare, share" We have all had it and some are still having ongoing issues. None of the girls when I joined the thread scared the crap out of anyone. They were marvellous caring women and I couldn't have got through without them. This thread was meant to say exactly how you feel, good or bad and nobody took that 'right' away from anyone and everyone was supportive. We are not dying today so try being grateful for every day that you are on this earth.0 -
Today is my 1 year since dx. Isn't it amazing what the body can go through...here I am a year later and loving life. I still have mental fears but each day they get better. Today I celebrate with my husband - we are getting massages and I am also getting a facial and then lunch...sushi YUM. It will be a great day instead of a sad day. I saw a recon specialist yesterday and will be moving forward in January with the DIEP. I didn't I was going to do recon but after this summer with the kids and the pool/beach I realized I couldn't do the prosthesis for the rest of my life.
Let's be kind to one another - we all have 1 thing in common0 -
Good morning, ladies and gent.I would like to try something. I would like to try a little something to get us back on track. Our dear LauraJane used to do it, even on her worst days.....Find something that you are grateful for and share it on this thread. For example, Having a great cheeseburger(naan), finishing a 5K run(Titan) Or seeing your husband move the furniture so you can dance in your living room to celebrate a good report on a PET scan(ME)
Sometimes you can be grateful for just getting out of bed in the morning.....whatever it is, it is special to you!
Have a wonderful day.
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Jen Jen, You might want to try emailing your onc as they should know. I do it to avoid phone tag. Anyone who has had chickenpox carries the virus and the fact that your body has been so traumatized this year between surgeries and treatments is bound to challenge the immune system not to mention the stress which can wake up the virus. If you are experiencing pain be sure to let them know. Also, yoga or meditation has been known to help. Best, Nance0
