Calling all TNs
Comments
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Daughter - is your mother competent to make decisions about her own care? 64 is not old for anything and certainly not for chemo. But this should be her decision not yours. If she is interested in the natural route you need to go visit the alternative threads. I think everyone on this thread has had chemo and/or rads and many of us feel we would not be here but for the conventional treatment we received. Yes some have complemented their treatment with other more alternative ideas. But you don't mess around with TN if you want to have the best chance of survival.
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To those of you with fear of recurrence:
I want to give you some insight. My case, although it happens, is not the "norm". My cancer keeps recurring, basically, I haven't been without it. And my advise to those who fear this is to just continue to live your life, fill it with as many activities as you can, and enjoy.
Yes, there are times that I have had fear. It is like mourning someone's death. There are stages..... denial, anger, acceptance, and peace. I have had all. Sometimes I go back and forth between these stages, but with all honesty, most of my minutes are at peace.
I've had a few friends die suddenly from accidents, heart attacks, etc. And all were relatively young, my age, 50ish. In a way, it saddens me to know that for some of these people, they were not able to make peace with relationships, and themselves. Cancer has given me a gift of understanding more than I would have ever thought if I was not forced to think of my own mortality. I'm much more forgiving, empathetic, sympathetic, understanding. I'm much less hurried (Conversely to what one would think since I know my life will be shortened), less stressed about the small stuff,less worried about attaining "stuff".
I am the baby of 7 children. Mom is 86. I have 2 daughters, 16 & 17. I am 51. Married. And I can honestly say I feel more blessed today than ever. My oldest brother tells me he loves me EVERY time he sees me,in fact all of my siblings and mom do (just more surprising about the eldest). My friends and coworkers have been amazing, bringing me food or small tokens of love. I feel their warmth always.
Today, my husband and I took a bike ride down to the park at the river, 7 AM, before the kids were awake. (we all know teens can sleep til noon!!!) It was beautiful, watching the water fowl, the flowing river, the peacefulness of it all. An hour ago we were outside pulling weeds and doing yardwork in this amazing sunshine and fresh air. And I appreciated it so much more.
My point is this: We can only do what we can do to stave off this disease. If it's going to happen it will. Worrying about it beforehand does nothing but eat up your time and energy. If these are the last few days, weeks, months, or years of our lives, do we want to have spent it in that way? Or do we want to look back at our lives and say ," Man, That was one hell of a ride!!!"
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Cocker and Cat - thinking of you both during your checkups and procedures this week.
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slowloris-amen, that was beautiful! We can all learn something from what you expressed.
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Slowloris I take my hat off to you. Everything you said is so inspirational. You are still undergoing treatment but continue to stay as happy and optimistic as possible and get on with life as some are others on this thread. The aim is to not look back, don't fear recurrence because it may never happen and why waste precious time on what if's. Not saying the what ifs don't come because they do but to get through it like you have is inspirational to us all on here. Plus although you probably were close to your brother it has brought you closer still. Good luck with your treatment and stay as upbeat as you can. Keep going girl we are all with you. Work and music has been my saviour and my family. It really helped me to go to work and able to concentrate on that plus have some wonderful laughs with the girls here. It's a magic formular for me laughing I think you can get through anything if you are able to laugh.
Inspired thank you for thinking about me tomorrow.
Cat hope that anxiety is better . Thinking of you and keeping fingers crossed.
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Annie....I swear the old fellers always think we have too many clothes...or shoes....what do they know..lol....yesterday I bought 4 shirts and a pair for shoes and my dh was like..you bought all that...yes dear....then he went away like a good old feller...
Daughteroftn...glad you came on here for support and information....64 is not old at all...if your mom is in relatively good health and her onc recommends chemo..maybe she should at least try it...she can always stop..
If I had been stage 1 and er and pr positive and taken the oncotype test and it was low and my doctors said I really didn't need chemo..of course I wouldn't have done it...there would have no need..but TN is a different type....more aggressive, more likely to reoccur without treatments (and no guarantee with treatment either)....there are very few of us that did not do chemo of some sort..some chemo is milder...maybe your mom could do that?
Please please don't believe everything you read on here...even what we say ok??? we are not doctors..just relating our own experiences...and trying to help...get a 2nd or 3rd opinion.
Yes..chemo is a big $$ business..but I am glad I did it....I don't know if I would have been here without it...I will never know. I really would like to meet someone with triple negative that went alternative and survived...I would love to hear from that person...but...so far...no one has spoken up.
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I did not mean to upset anyone with my post, it has been a very emotional and trying time. She doesn't know what the best route for her is and I didn't know if there was anyone else in a similar position or who had been through this. She had a lumpectomy and removed a 2.3 cm tumor and it had not spread to her lymph nodes. The options are endless and we are scared. My father just got over prostate cancer and my 29 year old best friend just finished treatment for her breast cancer.
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we just didn't know if radiation and mastectomy would be enough. We would definitely do that at the least, just torn with introducing chemo or not. I am very appreciative of any input:)
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slowloris: thank you, and yes, I really did not want to have more surgery. I am meeting another BS for a second opinion tomorrow. She is an TN expert, and I will see what she says.
Regarding chemo or not, it is a very personal choice. We just hope for the best no matter what.
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daughterof - I am 65 years old and I struggled with whether to have chemo or not - the thought of putting chemicals into my body horrified me. It took me ages to make the final decision! My family (except for one daughter) were totally behind me to do chemo - they were not ready to lose me just yet! When I made the decision, a horrible headache lifted from me ( I was convinced I had cancer of the brain) - but the headache was stress related. Like others before said chemo is do-able. Good luck to your Mom with her decision!
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cocker - in your pocket for your scans tomorrow. I have never had a scan, but it must be quite a stressful time wondering about the outcome.
Slowloris - you are an inspiration to us all - thanks for reminding me to live each and every day to its fullest.
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Daughterof, you obviously care for your mum a great deal and only want the best treatment for her. With all that you have had to deal with in your family re cancer it's no wonder you are scared.
I was 65 when diagnosed. When I went for my first visit to my surgeon I told him, I don't want surgery, I don't want chemo and I don't want radiation. He quietly looked at me, said alright then and closed the file. Then the tears flowed because I thought how the hell am I going to get over this for my family. He then said I have booked you in for surgery on 23rd November 2011 and in between tears I said ok then and just like that I made up my mind to go for it. I then went on to have everything. Chemo wasn't a walk in the park. After every infusion there was two to three days of feeling pretty horrible but then I would come right and feel great. So it is doable. When those bad days came and I used to dread them coming around I came on here and these ladies helped me through every bit of it. I then went on to have radiation which to me was a walk in the park (not so for everyone as everyone is different as you know) but I had no burning, no tiredness, no pain. I was scared stiff about chemo because I have a fear of vomiting but the drugs they give you are wonderful and I didn't have any signs of sickness.
Alternative medicine has never filled me with confidence because it's not tried and tested so to speak. But if that is the way your mum wants to go then she must at least try it. Her Oncologist will be the best person to talk to. He will advise her on the best plan for her and she will feel better once a plan is put into place.
She is not too old for treatment. 64 is not old these days and with the support of everyone on here and her family she can do it believe me.
Don't be afraid to come on here. I'm glad your mum has got a kind and caring daughter because she will need your support and hopefully she will feel like coming on and getting to know us. There are many tips on chemo we can give her that she might find helpful. They are the sort of things the Oncologist doesn't always get around to telling you about because they are more into the treatment side.
Good luck to you both and I hope your mum does at least try chemo because as Titan said she can stop it at any time, but I bet she won't stop it.
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Cat good luck for tomorrow girl. Remember we are always in your pocket every step of the way.
Adagio yes I do find it stressful because as much as I try to stay positive there is always that little part of my mind that wonders. My daughters also said exactly the same as your girls did, we are not ready to lose you yet mum. Thank you for your kind thoughts.
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Cocker- best wishes on your scan today (it is Tuesday there right?)!! Will be thinking about you.
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praying for Cat and Cocker!
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Daughter: I was diagnosed TN last year at age 70. Tumor was 5.2 cm, BIG. Did 5 months of chemo and now getting rads. I felt this was the right way to go for me. I'm otherwise healthy.
Does you mother have other significant health issues?
TN is serious stuff. Do your research, and ask questions of the oncologist. The onc should be straightforward about the side effects of chemo, given your mother's medical history. Only your mother can decide on her treatment, but with TN, I'd never have considered not having chemo
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daughter: I hope your mom's docs are advising her on the relative risk/merits of chemo in her particular situation. Certainly, she should have a consult with one or more oncs to see what they say. (Personally, I would be surprised if an onc didn't recommend chemo for a tumour that was over 2 cm., but only they have your mom's full medical history at hand.) It's important to realize that chemo is the ONLY systemic treatment for TN. Our sisters with hormone+ disease can turn to hormone therapies but these don't work on TN. Chemo is the only way to kill any cancer cells that may be floating beyond the original tumour site... if not, there is the chance they will take up residence in the bones, lungs, brain, liver or elsewhere, and then we are at Stage 4 disease. I realize this sounds alarming, but it is the risk we all have to offset against the effects of chemo. Of course there are no guarantees with or without chemo... it's just a matter of minimizing risk where it makes sense to do so. I wish your mom well - she is lucky to have a daughter who is trying to support her in this tough journey.
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low energy these days, but sending positive thoughts to the procedure girls this week.
lori, well said.
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The question of "what is my anniversary date" often comes up in this forum, and we often have different diagnosis or treatment dates that we reference as our anniversary date. I came across this article and in regards to recurrence peak, this is what is mentioned. The link has other Q&A regarding TNBC.
"August 2013 Ask the Expert: Triple-Negative Breast Cancer Highlights"
"Question: If TNBC is to recur it is usually in the first 2-3 years and I have heard that at 5 years or beyond there is a better outcome. My question is when do you start to track your anniversary date? The day you were diagnosed, the date after you completed chemotherapy or radiation therapy, or the date you had surgery?"
"Dr. Anders: In the landmark study that defined the peak of recurrence at 3 years for TNBC, this was defined as “from date of diagnosis” in the Clinical Cancer Research article by Rebecca Dent et al. entitled “Triple Negative Breast Cancer: Clinical Features and Patterns of Recurrence.”
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((((Annie)))) Thinking of you Annie and sending hugs and all good wishes
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Hi DaughtofaTN,
I thought it might help you a bit to hear from another 'daughter of a TN'. My mother was age 71 at diagnosis in 2011 and was a either a stage ll (b) or lll(a) (her doctors never gave us a definitive answer on that). It was a very scary and stressful time for her and the rest of our family and initially she was against chemo because she felt it might do more harm to her but after her mastectomy, she sat down with her doctors and us and discussed in depth, what to do next. She came to the conclusion that she really wanted to be around for us for a lot longer even if it meant a treatment that might have some big challenges. So she opted for the all of the treatment recommended by her oncologist, AC / T dense dose x 4, followed by radiation.
Speaking personally it's a real roller coaster ride when you're the daughter of someone about to under go cancer treatment. I cried many tears privately but did my best to put on a brave and positive face in front of my mom. My sister sometimes couldn't help breaking down around mom, which was understandable, but I felt that if I could hold it together, mom would have at least one positive person in her corner. Every person is affected differently in terms of their emotions. At any rate, mom says that eventually she took strength from my approach and in spite of wanting to quit chemo a few times when things got tough, she just buckled down and kept going. As a result, none of us have any regrets or 'what ifs' nagging in our minds.
Chemo wasn't easy but mom hung in there and we're so glad she took all the treatment suggested because she's alive and well and has been cancer free for nearly three years. This June she will be there to walk me down the aisle at my wedding. You just can't put a price on having your mom around for both the big and small moments in your life. So I guess what I'm trying to say here is, in spite of your own concerns or fears, just do your best to support your mom and help her to make the decision that is right for her. I wish you and your mom the best of luck and hope that like me, you will eventually you will be able to tell people about a positive outcome for your mom.
One more thing - I found this forum very comforting, reassuring and inspiring. In spite of the fact that I didn't post that much, the ladies on here did much more for both mom and I than they may know and I still lurk occassionally to follow how they are doing and privately cheer them on... so a belated thank you to all of you! May you all be around to experience and enjoy many more big and small moments in your lives and in the lives of your family and friends.
J. in Ontario, Canada
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TryingToSav what a wonderful warm and uplifting post. I'm sure this will help Daughterof. Many good wishes sent to your mum and your family.
Linda my friend thank you for the hugs will need them today.
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Cat and Cocker Spaniel, you are in my thoughts and prayers today. HUGS!!
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TryingToSave: Wise and beautifully put! I'm glad this forum was helpful to you and your mom.
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Hi Daughter, sorry if I was harsh sounding the other day. I think Luah put it best. Never put any of us down for the count because of our age. We do not consider ourselves old.
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Cat and Cocker....wishing you both the best this week.
Cat, for what it's worth, I've had a biopsy on nodules on my neck and the biopsy wasn't nearly as painful as the breast biopsy by a long shot. It's a little scary knowing they are sticking a needle in your neck, but the reality of it is that the injection that they give you to numb the area is the only part that hurts....and it is just a sting for a few seconds. Compared to other procedures, I felt like that the neck biopsy is a cakewalk. I hope it goes well for you....we will be in your pocket!
Yesterday, I did #5 of 33 rads....I'm hoping this week of rads will be as uneventful as last weeks.
I just want to say how much I have appreciated everyone's comments about learning to live with the uncertainties of cancer. We all have different ways of coping, but I feel we have so much we can learn from each other. It's wonderful to me to know that I'm not alone on this journey and that I can come here and share with sisters who understand and care. Thank you.
Kay
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5 year TN survivor. Had some calcification in other breast which was biopsied. Completely clear!!!! I also have had thyroid nodules biopsied before and was a breeze. Nothing like breast biopsies. As a matter of fact I have another thyroid biopsy this month. I am not worried at all. Ladies, I like most of you were terrified with the TN diagnosis. I did the aggressive chemo then rads. I am still here and thriving.
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Scoobydoo, may I ask about your thyroid nodules? Ever since rads I have felt a lump or thickening in my throat. Had TSH checked and yes-very hypothyroid. I was put on a very low dose of synthroid to start and it has brought my level down to acceptable standards but I still feel a lump when swallowing. Pushed for an US and it came back saying there were small nodules, my PCP says that because they were small, the lump I'm feeling is not from thyroid. She wants to send me to an ENT to evaluate. I'm confused and can't help wondering why my TSH of 46 came down to 3.8 with only .05 of synthroid. Any info you can give me would be appreciated. I guess I'm a little worried they may be missing something.
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Scan now over. Rads Tech says she doesn't like to give out results in case she is wrong because she is not a doctor, fair enough. Results then go to the Radiologists at the hospital for reading. She said I would know before ASAP if anything was wrong. Anyway she couldn't find my ovaries. As I had a hysterectomy she said there was nothing to anchor them and they move around and could even be sitting next to each other. I said they are probably all shrivelled up by now. She then did a transvaginal exam to check which was ok but the instrument she used was huge. Long time since I had a pelvic exam!! That was a bit uncomfortable but the worst bit was drinking the cold water before I left for the scan. 1½ litres of cold water first thing in the morning is not on, As she finished she did say I think everything is ok because I can't see anything. So hopefully with all of your best wishes she is right. Thanks for being there for me ladies.
Just waiting to hear from Cat now and hoping all went well for her.
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Anyone ever just pass out. I was on a bus trip on Friday and just blacked out. One minute I was having the time of my life and the next I was out like a light. My friends tell me I was out for 3-4 minutes, that I looked terrible and my lips were blue. They took me to the hospital and they said it was dehydration. I went to my family doctor today and she scheduled me to see a cardiologist to have a stress test and also to have an MRI of my brain. Now my family is trying to keep me in a bubble. So frustrating. Finally start to feel normal and it something like this happens.
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