Calling all TNs
Comments
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Shari= I hope you get some good news tomorrow. I will keep you in my thoughts and prayers.0 -
Oh Shari! I'm so very sorry and bummed to read what you've posted this morning! It's near impossible to stay positive with this disease. I always struggle with that and the bad thoughts are with me again this morning. I had the abdominal pain again last night. I am thinking this can't be good because it hurts on the left side but is more noticeable when I lay on my right. Again, I am really thankful my ultrasound was clear, but I see more tests in my near future to figure out the problem, and it will be stressful. Listen, I know you have your own fish to fry. Just saying I know how hard it is to stay positive. I'm thinking of you and praying. In your pocket tomorrow, holding your hand! XOXOXO!
Nat, sometimes I think other's including our famillies want us to stay positive because it makes them feel better. I can't tell my husband all my thoughts at times, because he's like you cant always think everything is Cancer. He's right but it's obvious after reading things here and other websites that everything isn't always textbook. So to me, odd aches and pains don't always seem "normal"!
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Nat, Eileen, Luv, thank you. Whenever I feel I need 'human contact=hugs" it's when I'm overwhelmed, which has been pretty much ongoing this week. I can see my hubby is also overwhelmed as his answer to everything is 'you have to stay positive' 'you can beat this' and I truly appreciate him trying and I'm not really sure if there would be anything he could say to make me feel better, but just verbalizing my fears seems to help a bit. I already know what he is going to say-he's at a loss also. Coming here and being able to get it all out helps, so thank you. It's so much easier for me when I know everyone here understands and knows how being TN is different.
Luv, I'm so sorry you are still feeling the unexplained pain, I'm proud of you for being such a good advocate for your health and hope they can schedule you for necessary tests quickly so that your waiting is minimal. As AnotherNYCG suggested, my daughter became lactose intolerant a few years ago and says she gets bloating and pain. Do you think you could try excluding dairy and see if that makes a difference while your waiting? Could it possibly be an ulcer from all the anxiety?
It's very frustrating trying not to let every ache and pain become more. The funny thing with me is that I truly was getting on with my life. I really thought cancer was behind me and even though I felt pain and a slight harder spot- I was pretty sure it was scar tissue. I guess TN is much more elusive.
Ok, I'm going to have a shower, put on some makeup, maybe go for my first snowmobile ride (been preoccupied since the lake froze) or a walk and breath deep with a smile. Well at least that's my plan ;-)
Love to all, Shari
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Hello Shari,
I have been reading back over your posts to try to put everything together in my mind as this thread is very active and it is hard to take everything in. I have always read this thread from its inception but I do not recognise many of the names here now, but my heart goes out to everyone here and I do hope things work out for all of you.
From my own experience I found the best way to get through this cancer journey is to deal with one problem at a time. Put everything else into a drawer and try to forget about it until you have to deal with it.
I am so sorry you are having to deal with this again but you will get through it. I do hope everything will go well tomorrow with your appointment. Are you having more surgery to deal with this other tumour or is it arrangements for future reconstruction?
I know we are all different but I had a large tumour 6cms + and I was told the prognosis was poor. I delayed my treatment and the cancer came through the skin of my right breast, but I had chemotherapy, then a mastectomy of the right breast, seven lymph nodes removed, only one affected, and then radiotherapy. This was in June 2005 and it will soon be ten years since all that happened. I am telling you all this to encourage and motivate you.
Wishing you all the very best and the same to everyone on TNS. Let me know how you get on.
I have just received an e-mail from a friend in Ottawa and she said that they have had the coldest winter on record.
Sylvia xxxx
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Sylvia, - your encouraging words to Shari are so helpful for all of us. Thank you!
Shari, - I agree that we may hesitate to express our feelings to our husbands and families, - we dont want to make them upset, and also, they dont see things the way we see them, That is why this board is so wonderful. Without having met any of you in person, I feel that we are good friends, even a family.
Dont consider a 'cancer stage' as a prediction of the future, - I know several people living a long life with even a stage 4 diagnosis. My own Mom had cancer starting when she was 12 years old, another cancer in her 40s, and later had breast cancer at 68, yet lived to a month short of her 99th birthday.
Dont deny your feelings, you have every right to be angry, disappointed, etc. but then gather up your warrior mode!
Hugs and BE WELL EVERYONE!!
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A huge thank- you everyone, you are all so supportive and I feel your love giving me strength! Today was a good day, although my DH 's snowmobile broke down so we didn't go far, but I rode mine and got some fresh air!
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Shari= You look beautiful and very healthy. I am happy to be with you through this journey. Hey!!!! WE CAN DO IT!!!!
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Shari, you do look amazing!
I wanted to share this link with everyone. What originally looked like it was an article on exercise and how it may help with cancer patients, it turned into an article that had a lot of other immune boosting tips in it, so thought it was valuable to share here: http://fitness.mercola.com/sites/fitness/archive/2...
Continued prayers to all.
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eileenpg, thanks! Your absolutely right WE CAN DO IT!
Teka, thank you, I think a group hug is in order!
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Electric blankets - we have a lot of cold weather folks out there .... that article I posted has a small note about electric blankets, something I had never considered about electric blankets before.
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Shari, so glad you had fun today and got some fresh air!! LOVE the picture! I'm grateful for everyone on here too. It's a great feeling knowing we are all here for each other!
Oh and thanks for the article Inspired!
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Msmath ~ Hello from a fellow MSer!
I am now 3 years out from BC treatment, so I can tell you the before, during and after of chemo, and how it affected my MS. I also had to stop my MS therapy, but did not have to stop my other MS meds, such as Gabapentin. Just make sure that you let your MO know all of the medications and supplements that you are taking. Also, make sure that your MO and Neurologist are in contact with each other, to coordinate your care, if needed. BC treatment takes precedence over MS therapy, because BC is a real Diva who knows no patience!
You CAN handle more than one illness at one time. In fact, I think we have an advantage over the other gals, in that we have already been through many of the things that they will experience for the first time. In my case, I had already had infusions, injections, multiple medications, and had experience with neuropathy, dizziness, weakness, and fatigue. Baldness was a totally new experience, however! Most importantly, I knew all about "good days-bad days" with MS, so when chemo knocked me down, I hung on until the good days cycled back.
The tricky part of MS/BC is after you are finished with BC treatment...MS is a Diva who will only step aside for so long, and then she reclaims her spotlight!
Since our journey is rather specific, let's take the conversation to PM, if you are interested.
Been There - Done That ~ Shar
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Shari, you look FABULOUS! You are covered in love, prayer, and gentle hugs!
Kath
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Shari ~ Your clouds are dark and snowy right now, with all the tests and reports...but once your treatment plan is in place, those clouds of yours will turn silver again. Looking at that photo ...YOU are the sunshine that lights up the sky and makes the snow sparkle! You are strong - You are an inspiration!!!
~ Shar
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Shari I love your picture and how much fun to play big in the snow!
Nat, Im afraid I am guilty of being one of those "think positively" people.I know it has helped save my life so I cannot help but encourage others to do so. But I do try to be sensitive to others when I know they hate hearing it....sorry if I ever offended you! I just cannot help myself!
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Shari you look beautiful. I have no doubt you can beat anything. Just one step at a time.
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Ally, have you heard any other results yet? Thought you were supposed to get biopsy results Friday. If I'm wrong, I apologize! Let us know.
Also hope to hear from Arlene soon!
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(((((((Arlene)))))))
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http://www.cancercare.org/connect_workshops/443-update_triple_negative_breast_cancer_2015-03-03
This webinar is tues 1:30-2:30 EST. Supposedly you can register and listen by phone. I believe we will also be able to listen to a "taped" version of it afterward. Not a very convenient time for me but hopefully some of us can listen and share
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Arlene thinking of you and hoping surgery wasn't too traumatic for you. Be kind to yourself and get plenty of rest and hopefully you will feel better soon.
Shari thinking of you today with all of your test results and hoping all goes well. I remember when I was first diagnosed I felt so alone. My hubby was positive and felt I would be "cured" but I didn't want to worry him and my daughters because I didn't want to see the fear in their eyes, consequently I have never felt so alone as then. But we are all here with a shoulder to cry on and to encourage you to express your fears. We all know what you are going through and are with you all the way, deep in your pocket. Sending big warm hugs to you and the hope that all is good news today.
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Meadow...not offended by you at all! Just by people who have never been through any illness telling me how to think. Nat0 -
Thinking of you Shari!
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Sending love to all the TN sisters out there. Shari praying for you as well.
I just got out of the hospital for a second time in a month so I appologize I have not been on the thread. My right expander got infected & they removed it after 8 long days of iv antibiotics in the hospital. And then just Monday my left expander got the same infection and they removed that one too. Now I am flat on both sides.
Standing with you all.
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Shari - what an awesome picture! I've only been on a snowmobile once, but it was a lot of fun. My heart is very heavy reading your latest update. Please don't ever feel the need to be positive here if you're not, in fact, feeling positive. I think there is a period of sadness and anger that is absolutely necessary to come to terms with any new diagnoses. You have to feel it and let it out...and we are all here to listen and be there for you during any stage...good or bad. Forgive me if I missed this, but have you actually sat down with your onc yet to discuss all of your results and discuss treatment? I hope you're able to get some concrete information soon. You are in my daily thoughts and prayers. One day at a time right now...heck, one minute at a time if need be. You are stronger than you know and will handle anything that comes your way.
Luvmydobies - So happy to hear your ultrasound was clear. I hope you're able to get into your GI quickly and get to the bottom of this pain. I totally understand how tough it is to have a nagging pain with no answers.
Thanks everyone for the kind words. I'm trying to stay positive, but it's hard. I read my MRI results on the patient portal and the spine MRI says the hemangiomas are "atypical and metastatic disease cannot be excluded." I have a similar area on my sternum that was discovered back when initially dx that they have told me the same - told me the same thing - apparently benign, but mets cannot be excluded. As I said before, this bone pain and inconclusive scans have been an ongoing issue and I've basically had it. I'm getting a second opinion with a new onc. The new hospital wants to wait until my pathology is in from surgery on the 11th, so my appointment won't be until some time after that. I don't know what needs to happen...a biopsy, another PET, whatever...but someone needs to give me a 1000% definitive answer. Mets or not. I cannot live like this, and I'm tired of my current team treating my fears surrounding this issue as anxiety. I don't know anyone who would accept this scenario and move on! (Okay, rant over.) As far as the biopsies, I was in such a haze when my BS said surgery that I didn't think to ask any questions. Now I'm wondering how this will effect my recon. Should I have my PS there to remove the implant so they can properly remove this mass? Should my PS be there anyway because the mass is so close to the implant? The other mass (that they said was benign) feels like it's getting bigger each week. I wish they'd just remove that one while they're in there. Sorry for the debbie downer post today. I'm grateful for the good news so far and need to just focus on that right now.
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Quick question for you ladies. My BS's office just sent me the surgery consent form and it's for an "excisional biopsy." Does this mean they're only taking a larger biopsy and not removing the entire thing? So if it's cancer they'll have to go back in? Can I request to have the entire thing removed now or is that not the typical procedure?
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Hi all, I don't post often but check in once in awhile, and like others am so sorry to see new members.Shari, I am sorry you are dealing with this again and will continue to hope for it being local only. When diagnosed (Jan 2012) I joined a clinical trial as I wanted a platinum drug and in my area (New England) I could only get it that way. I took Cisplatin with Taxol (a trial out of Vanderbilt) but research is good for TNs with platinum drugs esp if basal like in pathology.Many others have had good results with Carboplatin. I see you are in Canada and not sure how to enroll but you may want to research what trials you may be eligible for. Some of the best research is out of Canada. Best to you and you will remain in my thoughts.
Ally, You have so much going on. Maybe it would help to write a list of all your questions and email your BS and cc your PS, so all are in the loop and you won't have to duplicate conversations and forget who said what etc, or endure extra procedures. Do you have a patient navigator? If not maybe the nurse at the BS office would find out the info you need to help reduce some stress. Just a thought.
bchusband, keep that research going and best to you your wife and the baby!!
to all of us may we enjoy today......xo Nance
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Ally,
Prior to my cancer, I had an excisional biopsy. They went in and removed the entire mass and yes, if it was cancer, they would have needed to go in an remove additional tissue. Yes, I would request that they take it all now and go for clear margins if possible. I was pretty specific with my surgeon. My second lump was the cancer and mastectomy, but again, I asked her with the node biopsy, if in question take more not less. She actually had to reopen my right breast to take more nodes when it came back that I had a positive one. I was so grateful that she did that. I would just rather not have another surgery. I know it was a pain in the neck for her to scrub back in and reopen what she had just finished, but the patient care aspect I felt was HUGE!!! Don't be afraid to ask.
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I totally understand
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Allydp - Just a quick note regarding your PS and your biopsy. My PS has always said that if I need a biopsy, he would be the one to do it. Mainly so he can make sure to do the right thing when it comes to my reconstruction and the implants. They are very skilled surgeons, so I would contact him/her (if you haven't already) to ask what they think. I can't imagine all of the unknowns you're dealing with right now. You need answers and I hope you will get them soon (and that they're good answers!!). I remember when you first logged onto bc.org and I was amazed at how you handled everything. Praying for "good" answers for you!
Shari - You never need to apologize for being up or down with your attitude. We can all appreciate that sometimes our families just don't get it, as much as they think they do. Not their fault, but nobody understands like those of us who have fought the fight like you. Rant on whenever you feel the need. Praying for you too.
Luvmydobies - My daughter did end up getting a doberman puppy. We went to visit her a couple weeks ago so we got to meet my newest granddog! His name is Zen and he is now five months old. So precious. And her 5-year old 8-lb long haired chihuaha is the boss of him. They are so funny together. As much as her nose is out of joint about not being the only dog in the house anymore, they catch them snuggling up on the couch together pretty often now. Anyway, I see why you love the breed. Zen is just a little lover
Thinking of everyone even though I don't post often. Fingers crossed for everyone waiting for news.
Kathy
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BanR, I re read your post about your cardiac diagnosis, and your doc says it is not related to the chemo. I am not medical, and your doctor is the expert, but isnt it a surprise he doesnt think it is a post chemo condition? I would have thought so just by the timing of it. How are you feeling?
SA8, I am so so sorry you have had infections and they caused a set back in your recon. That just plain stinks. (((SA8)))
Ally, You are the strongest little lady I have ever known. I know you are struggling. Just know we are all with you and sending you all the energy possible to fight. God please heal this special sweet sister and let her get on with just being Ally. Amen
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