Calling all TNs
Comments
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Hello BanR,
I am sure you will find the thread Inspiring Stories from Around the World most interesting.
I am now casting my mind back to 2005 when I started neoadjuvant chemotherapy. I had a large tumour, about 7 cms, that seemed to appear from nowhere. During the six months of chemotherapy, which I had every three weeks, I saw the oncologist or her registrar regularly before going on to the next session and they would measure the tumour. It did shrink during the treatment, but it certainly did not disappear altogether, but it shrunk sufficiently to make the surgery for a mastectomy easier. It was after the mastectomy that a beaming oncologist and breast cancer surgeon saw me together and said they were happy to report that I had an excellent pathology report and that I was NED. Later, I had three weeks of radiotherapy with boosters integrated into it. I then went on having regular check ups.
I went to the thread that you started, Long term survivor examples, and read some of the interesting posts and put in a post of my own to motivate and encourage people that we can do this journey and come out the other side. As for breast cancer with triple negative receptors, I think patients should take no notice of all the doom and gloom written about it. It is written just because after standard treatment there is nothing such as tamoxifen or aromatase inhibitors to treat it. In a way we can be said to be lucky in that we can get to work with strengthening our immune system through good nourishment, keeping active, avoiding negative stress, steering clear of too many chemicals and generally doing all we can to help ourselves.
Take care. I am amazed at the sisterhood on this thread.
Best wishes.
Sylvia
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scan results are negative. Sigh of relief.
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WooHoo Jen!!! So thankful you're scan was clear!!!
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Yay Jen!!!!! So happy to hear this.
Awesome awesome news this morning!!!!
Hugs
G
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Hello Cocker_Spaniel,
Thank you for your kind words. I think it is so important that those who were diagnosed sometime ago stay on board to encourage and motivate others. We need to tell them not to take any notice of all the doom and gloom we can read about breast cancer with triple negative receptors.
I appreciate and admire the wonderful sisterhood on this very large thread and you write such interesting, comforting and informative posts. I must not forget Mike whom I think is AlHusband. He has a great sense of humour. We also have Tom (breastcancerhusband) who posts on both threads.
On Sunday I watched the Remembrance Day service and noticed that Charles and Camilla were not around. Now I know where they were. I have not seen any publicity about their trip.
The weather here in the UK is very strange for November. We have the usual cloudy sunless weather but it is very mild and it does not feel quite right. Devon is a damp county and lots of people are saying it is making their arthritis worse.
Congratulations on being four years out.
I was very interested to read about non-Hodgkins thyroid disease on the thread, as I had never heard of it, only Hodgkins lymphoma or non-Hodgkins lymphoma.
Take care.
Best wishes.
Sylvia xxxx
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Hello Luvmydobies,
Thank you for your kind words. You, too, can do this.
I do try to read the posts regularly and will continue to do so if I think I can be of help. I used to post here a lot when Titan first started the thread. That is many, many pages ago and lots of the names that were familiar to me have stopped posting. For the past five years I have been dedicated to the UK thread, as I thought breast cancer with triple negative receptors was in the dark ages when I was diagnosed. Even now, I do not think patients are given as much information here as in the US but I keep telling patients to keep asking questions and take control of their treatment.
Wishing you all the very best.
Sylvia xxxx
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Hi everyone, just popping in to say hello, I've been MIA trying to get on with living and just checking the odd thread on Diep. I don't mean to ignore my favourite group, but just needed to step away. Sometimes I try to forget BC and pretend life is normal. I've had a good check up but now must decide on whether to get an oophorectomy/salpingo for an ovarian cyst detected in Feb that has not resolved. Tough decision, was told by oncology gynaecologist that it is highly unlikely to be malignant but she can't guarantee.
Hope everyone is well, your in my thoughts and prayers even if I'm not following this thread as often. Hugs!
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Cocker - wonderful news!!
Jenjen - yay, so happy to hear about the clear results!! But boo for the painful stones. Hope they break them up at least and you're not in too much pain.
Lisa - that stinks you're having to go through all this for a nodule that sounds like it will turn out to be nothing. I have Hashimoto's, which is a thyroid autoimmune disorder, but haven't had any nodules. Please keep us posted. I'll be sending you good thoughts that you're able to resolve all this soon.
BanR - I'm so sorry you have more waiting on a biopsy now. I found a lump next to my implant after my BMX. Had a mammo which came back inconclusive so they did a biopsy. It was fat necrosis. I'm hoping the same for you. We're all in your pocket still. Hang in there!
Shari - great to hear from you. I do the same...try to just have some days where I forget the cancer even happened and just LIVE. I'm so sorry to hear about the cyst. Do they want to remove just the one ovary or both? Since I'm BRCA+ I've had a bilateral BSO/hyst, so if you have any questions about that I'd be happy to answer them.
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Wow! What great support all you ladies have/give! Glad to hear of all the good results and celebration of another year!
Everything with my mom is well! She no longer has hair so she has been rocking the cute scarves! I planned to go home this week to take her to chemo, but I am sick, so that is that
I hope all you ladies are doing well and I thank you all for the support you have given me!
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Thanks for the thyroid info. Assuming it will be benign but glad they are checking. Any lump or bump they want to check now, I guess that's ok. Sch for 11/18 and assume will get results few days after.
Jen, awesome.
Shari, glad all is well. Nice to hear from you again.
Sylvia and cocker great posts. Thanks. Always helpful
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Sylvia you are a part of this thread too! We love having you here with us.
(((slv)))
Jen great news!
Hello to all!
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I have the dubious privilege to now be a member of both the triple positive and the triple negative group.
In 2010 I had IDC that was +++ as well as ILC only ER & PR+ in the left breast. Wanted them both off, but bs would only do one.
Did chemo and herceptin and have been on an AI for almost 5 years.
Had an MRI on my right breast in March that was completely clear. In Oct I celebrated being five years out from surgery. Yay me!
Last week felt a lump in a lymph node at the corner of my jaw and freaked. Went to dr and by then had found a largish lump in my breast. More freaking.
Ultrasound and core biopsies done on breast and have come back triple negative. 2.5cm with its own blood supply. Lump in my lymph node is just left over from a really bad cold I had a couple of weeks ago.
Having scans today and tomorrow to check for mets. Having a mastectomy next week with port insertion at the same time.
I'm completely stunned. I know a lot about triple + but almost nothing about triple negative.
There's probably everything I need to know in this thread, but at the moment my head is spinning too much.
Anyone able to give me the short version of what I'm facing?
Trish
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LUV thanks for your post. How did your move go. Is your house being built yet.
Meadow you are a Gem. Would be lost without you.
Shari bout time you came back. No seriously I'm glad you are taking time out for you. Everyone needs that now and again. As for the oophorectomy, I say go for it. We all know breast cancer can spread to the ovaries so don't give them a chance. My garden is looking a picture and I find something new has come up each day. It's a real delight for me.
TD bet your mum looks good in those scarves but best to give her a wide berth if you are sick as her immune system will be compromised at the moment. In your pocket with big hugs.
Lisa in your pocket that all will be well with the nodule. Praying for fat necrosis.
Sylvia your posts and you are always welcome. You cheer us up no end. Thank you for your kind thoughts but when I was first diagnosed the ladies on here were a God send for me. I must have been like a possum in the head lights. Totally dazed at my diagnosis, totally freaked out, worried and sick to my stomach but those ladies were here for me without fail and now it's my turn to give back. There is only one word I cannot stand and that's recurrence. When you are just diagnosed you don't need to hear it, when you are going through treatment, you don't need it, when you have finished treatment and are wondering what the future holds, you don't need it. I think cancer gives us all a wake up call. I have been blessed with my beautiful family and my loving supportive husband but I have also made changes in my life hopefully for the better. I try to laugh every day, I walk more, walking my dogs is not a chore now that has to be done, I enjoy it. I find something good in every day if I can. I feel for the ladies that don't have support or a loving companion to be there for them but we are here as a substitute and we know what they are going through. I pray that our Ally will get the wee babe she so badly want's and needs, I pray that LUV will be able to settle once and for all in her new home and doesn't have to move again, I pray that Shari can find happiness in her garden, I pray that Jan will have no more fires to worry about, I pray that Mike's wife Kathy will never ever have to worry about cancer anymore as I do all of our ladies. I think of all the ladies and wish them nothing but good health and happiness. If you believe in God keep your faith it is so precious and helps you through. I also pray Sylvia that you reach another ten years and so do we on this thread. I understand that the ladies on here don't come on each day and I pray that they are out there living and are happy.
Well that was a bit of a rant wasn't it. But I love all the ladies and Mike and his Kathy on here and will be there for them whenever I can be.
Might pay to just tell me to keep quiet ladies!! lol
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Oh Cocker, I was just making a quick pass thru, but I had to pause and read and then re-read your post. Now I have tears in my eyes and can barely see. You are so precious to me. We seem to be the only old-timers here any more. Hugs. Fire season is over. We even had a bit of snow last night. I hope your NZ boys all returned home safely.
Trish, welcome to this thread. Sorry you have a new diagnosis. I have to say that trip neg seems like it is easier to handle than trip pos. Just get MX, chemo, and rads. No meds for years and years. Well, OK, that's not easy, but doable. We are good at hand holding to support you thru the treatments.
Greetings to everyone. I've been neglectful about posting lately, but I do care about each of you. Jan
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Jan my dear friend my post wasn't supposed to make you cry. I do think of you and the ladies every day. And yes, we are old timers so we know exactly how they feel and we understand the ladies and what they are all going through and wish we could do something about it. Keep on coming on Jan, I couldn't do without you. xxxx
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Teka beautiful autumn picture. Did you make the flowers out of little beads?
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Thank you all So much for being here.
I read every day, think of all of you every day. I am trying very hard to be "me," again, but I am having some difficulties. So, I have just started to see a LCSW for therapy, and I have started on low dose Prozac, for anxiety. I know I should be thankful and happy to be here. And there are many things I am thankful for. I know I am lucky to feel my neuropathy slowly but surely disappearing, my curly white hair is definitely growing and I am losing the fatigue and am back at the gym; physically I am feeling pretty good. But I cannot shake the anxiety and fears. Ugh. I get so frustrated with myself. I have gone too long not eing able to enjoy...Even with the support of family and friends--but they don't always "get it," like all of you do. So, I am hoping this therapy and the prozac will help. And I know it helps to come here. (Almost funny that I felt so much better mentally during chemo--feel kinda lost with no more treatments ahead)
It's not helping that my recon doesn't look nearly as good as I'd hoped. My PS said I need more reduction on the right and fat grafting on the left. Yay (Not!), More surgery in the spring. My 2 lumps on the left will be monitored, and hopefully are scar tissue from my hematoma-but still worrisome to me.
So, I feel like a wimp. And I am sorry I don't check in more often. I so appreciate all of the support here. I wish I could express myself half as well as you, Cocker---your words always are uplifting and so helpful. And I love reading of the milestones so many have achieved.
I pray for good results for all going thru stressful scans and tests. Let all of our lumps be scar tissue, please. And Shari, I wish your cyst would just shrink, already!
I am not good with keeping track, as I am on my Iphone in the dark---yes, have some sleep issues. Lol. But please know I feel like I know all of you, and wish this BC and its aftermath would just let up on all of us...
Hugs!
arlene
I am sorry for the rambling and whining, I am going to try to get that glass half full!
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Arlene dear girl you have been through so much and then all of a sudden you are left with - nothing - no more treatments and just a lot of finger crossing. It takes time to come to terms with the fact that you have had breast cancer and now you don't know what lies ahead. Most of us have been there and know exactly how you feel. Everyone thinks that the girls who can take Arimidex or Tamoxifen are luckier than us but I know many girls who have relapsed and passed away whilst taking that drug. Triple Neg is not the doom and gloom that people paint it as. It can't be, Sylvia is 10 years out, I am four and countless others on this thread are many more years out than me. It's a shock because you can't believe that you got breast cancer in the first place but you will gradually get over that and start to live properly again as you once did. Take the Prozac if it helps you, there is no shame in needing an antidepressant, I took some and so did others as well. You do what you have to do to get you through. The therapy will help but make sure they know every thing you are feeling, so don't hold back or they can't help. As for the neuropathy I still have some in two of my fingers but to me that's nothing if the cancer has gone. Take some time to think about further surgery after all there is more to life than breasts, there is you, and there is no hurry. No, family and friends don't always get it. My own hubby is convinced I am cured and that may be so but they don't want to think of the alternative any more than we do so the more they don't think or talk about it the better they feel. You are far from a wimp, most people couldn't go through what you have gone through and done it as cheerfully as you did and even with laughter at times. The only thing I would recommend is that you insist on getting the lumps checked and you will probably find they are fat necrosis (A word we all love). Take one day at a time, fill it up with plenty to do, max out your credit cards, have a glass of wine or two and when you feel down and don't want to do something do it anyway and little by little the fear and anxiety will lessen but it will take time and some effort on your part. It doesn't matter that you don't check in very often because we know you will come if you need us or to rant, rave, swear, cry, anything that will make you feel better for a while. Remember we have all felt like you and "we get it".
Thinking of you dear friend and hoping you will begin to feel better soon. Huge big hugs to you. xx
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Hello Cocker_Spaniel and everyone on the thread,
I just wanted to say thank you for your kind words and to let you know that I am thinking of all of you and hope that, at whatever stage of your treatment you are at, all will be well. I also hope that when you have finished treatment and are trying to get back to a more normal life, in which you can put cancer in a dark corner, that some of you will try to stay on and help others to get through this difficult journey. It is only those of us who have been through cancer that can really understand what others are going through.
Worldwide we belong to a club and we stay a member of that club.
I think it is so good to hear from people from other countries, not only from the breast cancer point of view, but from an educational one. We so desperately need peace in this troubled world.
It is also very useful to share information.
Thinking of all of you.
Sylvia xxxx
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Hello Cocker_Spaniel again!
I have just re-read your post and want to congratulate you on your deep thinking.
I do agree that it is important to laugh as I think laughter is the best medicine. I remember how frightened I was when first diagnosed and I remember how much I cried after spending the day at the hospital going through mammogram, ultrasound, biopsies and then a final consultation with the breast cancer surgeon and being told the prognosis was not good. After that day I did not cry again, was very calm and just got through the treatment.
As you say, recurrence is the word we do not want to hear but we have to live with it. Even though I am ten years out, I take nothing for granted. That is the real curse of this disease. Most of the time I just live normally.
I think we are lucky that we enjoy our gardens so much. I live in an apartment but we have beautiful grounds and I love spring especially when everything comes to life. At the moment it is autumn and a soggy mess.
Thinking of you.
Sylvia xxxx
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BanR, wishing you the best on your biospy today. Hoping for fat necrosis.
Trish, I'm sorry to hear of your diagnosis, but I'm glad you found us. Isn't that amazing that one cancer was TP and now the other is TN.....it just goes to show how strange cancer is.
Sylvia, thank you so much for continuing to post here. I LOVE hearing about long-term survivors like you!
Arlene, I ended up with quite a change to my appearance after my surgery too. I hear you on being disappointed with the results. I have what I call a boob-let now (I think most men have something larger than I have on one side). I'm kind of a strange case because I had breast augmentation years ago and they removed the implants from both sides during my surgery....they had both ruptured somewhere along the way. I've been looking like this for almost 2 years now. I feel like I'm adjusted to it...but disappointed. I remind myself that I'm lucky to be here, but I really envy women with boobs! Even though I still technically have boobs, I might as well not. The nerves to my nipples got damaged with all the surgeries, so the tiny mounds I have left are pretty useless.
On a happier note, I'm going for my breast cancer six-month checkup today and I have nothing major to talk about either to my MO or my breast surgeon. I have questions, but that's it.
Lisa, I think you asked about thyroid issues. My original breast MRI showed nodules on my thyroid that I had to have biopsied. I have annual follow-up appointment now. I did read an article that said that women who had BC had a higher likelihood of developing thyroid cancer in the 5 years post treatment, so I'm glad I'm on a follow-up plan. I don't worry about it. Everything I've read indicates that thyroid cancer is usually very treatable with excellent results.
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Cocker and Sylvia: {{{{HUGE HUGS}}}} to both of you for giving strength and hope to those of us going through this nightmare right now. It helps more than you know to realize that there *is* life on the other side of all of this!
Arlene: what Cocker said! Throughout this ordeal, random people and relatives have told me that I "look great" and "seem to be taking all of this so well." My response: "fluoxetine 20 mg, folks!" If it weren't for my daily dose of (generic) Prozac, I'd probably be on the floor in a fetal position, screaming. *Some* part of me/us needs to be able to function at least somewhat rationally—especially when what we're going through is so random and senseless! *HUGS*
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I am 62, dx Oct 4th. Triple Negative....Mildly 20% pos. or estrogen, but essentially TN. 5.6 cm tumor on right with IDC. Stage 3 with grade 2. Lymph nodes positive. Have surgery tomorrow at UNC bilateral mastectomy and lymph node dissection on the right. Scared silly. Chemo in 4 weeks, radiation after that. My life is turned upside down and all I do is cry. I am a a total bitch to my husband who is also a wreck....
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Cathyviolet: *HUGS* We're all so sorry that you have to be here—but you've come to the right place! Positive vibes for your surgery tomorrow! Please keep us posted!
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Arlene, Cocker & Sylvia
Thank you for your honesty and your willingness to be real. I have found that the emotional part of treatment and the coping/thriving that we are expected to walk is not addressed in the medical field as much as it should be. As women we need to be able to talk this out and process the best we can in the situations that we find ourselves. Our spouses, significant others, friends etc sometimes tire of hearing about it and honestly don't know how to "fix it" even though they really really try. I read this article and think she says a lot of great points on what we face through, during & after treatment.
My sincere prayers and love are with all of us as we move forward. Thank you to all the ladies and men on here that help contribute to our well being.
Hugs everyone.
G
http://www.huffingtonpost.com/uzma-yunus/the-missing-conversation-_1_b_8351056.html
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Hello Everyone!
I had to create a new user profile because I couldn't remember my old info. Anyway, I am SunnyCoconut, well now SunnyCoconut2, also known as Chris. It has been 6 years since diagnosis and 5 and a half years since ending chemo!! I really just wanted to drop in. These discussion boards were so important to me for so long. The funny thing is I don't know when I stopped visiting. In a way that is a good thing, right?
Well, I just wanted to say, hi. I think it's important to know that a triple neg diagnosis is not a death sentence. There are many of us walking around out there!
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SunnyCoconut2 , thank you so much for sharing this!
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Arlene, thank you for your post. I feel the same way... So lost in this post-treatment world.. It's honestly scarer then when I was going through chemo and surgery... Family and friends think I'm cured and I just Smile and nod at this point... No one gets it... I cry alone looking at my daughter thinking I'm going to die and she'll never know who I am... Her first birthday was yesterday and I kept thinking this could be the only birthday of hers I ever see. Maybe I should try meds or something... It's just so hard and I'm so scared every minute.
Cocker and Sylvia, thank you for your posts! Seeing positive outcomes gives me the hope I need right now 💛
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SunnyCoconut2, thanks so much for posting!
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(((Cocker))) Thank you for your post. You are a blessing to me.
Love to you all
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