Calling all TNs
Comments
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Hello Shari,
I am just posting to say that I am sorry to read that you have a local recurrence and just wanted to send my best wishes that a mastectomy will take care of this.
I was glad to know that the pain was a cyst and that there is no problem with the bones.
Stay positive. You can get through this.
Best wishes from the UK.
Sylvia xxxx
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Hello Shari
I am so sorry to hear you have to battle this again. Your docs will get that junk out of there and you will keep it from going anywhere else. I am sending hugs and prayers and love,
arlene
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THANK YOU everyone! I will definitely remain here for support and guidance. If anyone here has had diep and wants to share with me what it is like and if your pleased with results, or if you would do it again that would be great. I really want to feel like I can beat this but I must admit, I'm scared- with such a good prognosis the first time and me giving it the hardest tx available, how the heck do I have it again? I guess that's the million dollar question. Debra pm me and asked about what I experienced to phone my MO in regards to breast pain and I'd like to share this in hopes it will help others.
My breast was always pretty sore after the feeling started coming back. Exams were painful and even sleeping on my side was sometimes uncomfortable. I always felt a lot of hard/thickened scar tissue internally, however the uncomfortable soreness was only during self exams. Then about a month ago I noticed I was experiencing pain spontaneously. I've had breast cysts before and it was similar. It was a burning -blunt jabbing- pressure type of pain. It was new. As I felt I was surprised to feel an area just above my LX scar that seemed harder than the internal scar tissue. Both my BS and MO said the recurrence is in the scar but I feel it just above. I don't want to alarm anyone, but please don't let up on self exams. My next mammo would have been June. Any words of encouragement are greatly appreciated. I still can't understand how this bugger survived chemo and radiation.
Mags, beautiful picture, so happy for you and your daughter-gorgeous bride!
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Shari - I am so so incredibly sorry you have to fight this again. I hope you'll lean on us. We will all be here for you and you WILL get through this. Since you didn't have Adriamycin the first time, is that something they could do now? Sending you hugs and strength.
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Allydp, thank you, my mo said that because chemo was so hard on me the first time, she doesn't think I could have it again. I had high dose vs. dose dense and it's usually reserved for metastatic cancer but is the way she treats TN. I've had my lifetime limit. She did mention one of the platinum chemos but was unsure ' the board' would approve, so right now I'm counting on surgery and will find out after surgery and complete pathology if I can get chemo. She also said she doubts my RO would approve more radiation to the same area because it came back so quickly a year and a half after initial rads.
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slv, - you are right, -radiation is not given a second time to same breast.
re chemo, - I had a hard time after my first dose of ACT, so my onc divided up the following treatments. After one round of AC, she gave 3 of cytoxin, then 3 of adramicin, then the 4 taxol. Perhaps your body will be ok with something like that, too.
Also, my closest friend is dealing with pancreatic cancer for over 8 years, and is now repeating a chemo regime that she had some years ago. It helped before, and the hope is that it will help again. So it seems that they do sometimes repeat chemos.
Stay warm up there, - and think GOOD thoughts!
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Slv
I'm so so sorry to hear this news.
At least its a local recurrence and hopefully its remained local. Did they say anything about the size of it?
I hope the board approves you getting a platinum agent - its worth a shot.
Many many prayers and much love
Tom
xxx
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Shari, like everyone else here, I'm really sorry to hear you are dealing with this again. I'm just glad it is a local recurrence, but still...yuck! Thank you for telling us how it felt in your breast as the cancer returned. It helps all of us in our own self-exams. I hope they are able to come up with a chemo cocktail that is both effective and doesn't wear you down too much. This disease is so frustrating.
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I will kick cancers *#€¥!!! The good wishes, concern and positive thoughts fills me with much love and hope, thanks everyone. BCH, my MO had just received the results from biopsy and it showed TN-she said aggressive again, so I guess grade 3 and I think the largest measurement was 2.1 cm, but I may need to correct that as I was in a state of shock. I didn't think there was a possibility of it coming back with PCR, good margins and all that radiation. I honestly thought it was scar tissue, maybe a cyst. My results aren't posted yet for me to read.
Please ladies pay attention to the tissue under your scar. Learn what it feels like even though you may have hardness from scarring. If anything feels a little different/new or you develop a pain that is new, get it checked out. TN is sneaky, I'm learning that.
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shari...I am so sorry you must deal with this! I had diep and can share. Just pm me and I can answer anything for you
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Shari this is shit news for you. One step forward, two steps back. First it turned out to be a cyst which was reassuring then a local recurrence. No wonder you were in shock. I am so sorry you are going through this. AnotherNYCG is right you can't have radiation again on the same breast, but there must be a lot of chemo's out there that they can try. On the up side it is a local recurrence and hasn't spread to other organs. I know you are afraid, as we all would be, but you can do this. You have done it once and you can do it again. We will all be in your pocket and will come through this set back with you. Sending lots of love and big hugs to you.
Cancer SUX big time.
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Mags thanks for sharing the beautiful picture of you and your daughter. You are glowing. So wonderful.
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slv, just so sad and angry about your recurrance. But this mastectomy will get it FOR SURE. And then you wont have to deal with that no more, no mo'! you are in my thoughts and prayers ((((big hug)))
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Shari another lurker here wanting to let you know there is more positive energy coming your way!
FYC! (F*** you cancer)
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love our lurkers JJ
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slv, I sm so sorry to hear that you have to deal with this. I am somewhat of a lurker, too. I had a BMX with immediate reconstruction-DIEP. I am so very happy with the results. Not a single regret. I am more than happy to answer any questions. Sending loving thoughts and healing energy your way. ((Hugs))
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Mags beautiful as usual and so is your lovely daughter.
Some gorgeous dogs on here ladies, just love that gorgeous old feller Toby
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Cocker, Meadow, Zenful, JJ62, Mags Thank you for your loving concern and positive energy- I will use everyone's positive gifts to add to my army. I'm starting to mentally settle in to this new dx. I've decided to get a portrait done celebrating my girls. Probably sounds weird but I love all my body parts (no body image problems here even though I'm 40lbs over-lol) and giving one up saddens me. This is my way of 'letting go' and getting ready to fight. I'm very content with my decision to reconstruct because this to is my way of fighting. I'm fully aware that it may not 'take' and in that case I will eventually get a beautiful tattoo to cover scar! I have this planned now and feel more at peace. The first time, chemo, surgery and rads gave me peace and strength. Now it's surgery but still hoping I can have some kind of chemo after. Wow- how many people want chemo?!
I've already had someone ask me if I regret not getting a MX the first time -how can people be so insensitive? I'm a control freak by nature and I had to struggle and learn to give control over my cancer to the pros. When I did, I felt better but it was hard. My doctors don't understand why I have a recurrence, but my MO says it's good that it's TN because it means that is was a errant cell not that my body is making all kinds of cancer. I have to trust.
Everyone is in my thoughts and your attention is so appreciated. Happy week end everyone!
Shar
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Hi All, Shari, I am so glad you are ready to fight. I feel as if I had some fight knocked out of me tonight. My surgeon called at 630p to tell me she no longer thinks LX will work for me, after 6 weeks and 3 docs telling me it will be LX, chemo, rads. Now I have to see a plastic surgeon to discuss options. Still no surgery date. My MRI Core, 3 days ago shows a 7mm mass and 4cm linear extension. IDC in the mass and DCIS with lobular components, high grade, at the posterior end of the 4cm. It's at 9-10:00, so a lumpectomy will make me look very distorted, and I need a reduction of my right breast (DDDD). Everything has become more complicate, and I feel the wind knocked out of me. I have early hypertension, am 57, and smoke. What a jerk I am. Have been up most of the nite smoking my last cigs and drinking Coke. I need to draw some strength. I am a control freak, and am losing it. Just writing this and admitting the. Stupid cigs is helping. Now I have so much more to learn and don't know where to begin (of course the butts gotta go). Thanks for listening. Wish it had been MX from the start. Want this war to get going. Breast Cancer Sux.
Shari, I admire you, and need to swipe some Attitude.
Arlene
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just read my own post and feel like telling myself to quit whining and get on with it!
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Arlene you're entitled to whine! Don't beat yourself up over this. I still do from time to time. I always think what did I do to cause cancer but the truth is it is nothing we do to cause it! I was in good health, ate right, exercised, healthy weight, etc., yet I still got BC. I need to stop doing that but still do it . I have a bad headache this morning and the bad thoughts are creeping up. Ugh!
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I second the fact that we didn't do anything to cause our cancer. My BS told me it makes no sense. I was healthy, ate right, exercised, drank only now & then & not overweight. Blood pressure, blood work was all good so as stated why? Just is.....so we deal. Keep fighting. Learn from all info you get & be your own cheerleader. Positive attitude helps. Don't let the "drunken monkeys" take over your thoughts. We all cheering for each other, and prayers daily for our "Sisters".
Best to all this day.
Marsha
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Arlene, - I know it stinks, but hang in there! The idea of mx and reconstruction and then treatment is so overwhelming in the beginning, and I, too,felt that the wind was taken out of my sails. (My kids are now always sending me pictures of beautiful sailboats!) It CAN be done though, - and sounds like you have a strong support system. There are amazing plastic surgeons out there. Find one that has a specialty in breast reconstruction, If you were near here, I would suggest 2 in western nassau county, but I am sure there are great drs closer to you.
We have all been in your shoes and understand completely how you feel.
Sending hugs from across nyc!
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greenae= I too am in excellent health. Have exercised 5 days a week for 30 years.Never overweight. Never smoked. I did drink 2 glass of red wine for years. However,which is a contribuating factor for positive ER PR breast cancer. Which we do not have. Have not eaten red meat for 28 years. No processed foods. I could go on and on about what I did to keep healthy. Cancer does not care. It does not discriminate. Anybody can get for no rhyme or reason. So, stop thinking about what caused it. Spend you energy on fighting it. Look forward not backwards. I wish you only the best. This is a club we are now members of that nobody wanted to join!!!!
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Thank you, my friends. I don't think anything I have done has caused this BC. Have been a "closet" smoker, and know it's not that. But I am reading smoking causes all kinds of problems with reconstruction, and my mindset these past 6 weeks is making me want to smoke. I have not looked into MX at all, as it was never discussed with any of the docs...Anyone have strong feelings re: expanders, implants, DIEP, etc? I won't be able to get any plastic surgeon on phone this long weekend...guess I have some reading to do. Thank you for your support and encouragement.
Happy Valentine's Day
arlene
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Shari I am glad to hear you are gathering your army to fight this damn cancer and know that we will always be in your pocket. I can understand how you feel about body image. Mine never was perfect but I was happy with it and it was me. Now of course there is some missing and in a way I am grateful for that, if you can understand that. I wanted the cancer well and truly out but because it was microcalcifications and widespread I wasn't offered a lumpectomy or reconstruction. I'm glad you are content with your decision and hopefully your reconstruction will take and there doesn't seem any reason why it won't, but a beautiful tattoo will look good as well. There are heaps of chemo out there and I'm sure there is one for you. I am so glad you are at peace with your decision. You are facing all of our fears but keep going girl it will all turn out fine. This army is ready to march and do battle with you, and I know you will get through this.
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Arlene, - my breast surgeon helped me line up appointments with 2 plastic surgeons that she works with and thinks highly of. Each specialized in a different type of reconstruction. I was able to see them quickly, and gather info to decide which to go with. Breast surgeon and ps then arranged the surgery date with each other.
Perhaps your dr can direct you, as mine did.
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Arlene I too am a smoker. I have been ever since I was 17 and my mum was dying with ovarian cancer. I didn't smoke then but it was the doctor who said give that child a cigarette as I was distressed and have smoked ever since. Everybody did it way back then of course. I was a happy smoker for years in as much as I enjoyed a smoke occasionally but when I was diagnosed there was no chance of me giving it up as I was too nervous and worried and I smoked more at that awful time . I have never drunk alcohol and for some people that is a stress release too, a relaxant. None of this causes cancer but I think if it helps you to get through, then do it. There are always people who will feel they have the right to tell you what to do, whether you know them or not, but they have no control over your life only you can do that. Do what you need to get through the hard times such as what you are going through now. I feel you have the strength to get through this battle just like Shari and once your plan is in place you will feel better. We are with you all the way. Sending big hugs.
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Arlene, you are doing great, you have a lot of information changes that your trying to deal with. None of this is easy and we all have down days. This is natural so come here often and open up to these great women, we all understand these things the way only another TNer can!
I had my breast MRI today and will have my left mammo on tues. March 9 is my information class, then formal apt. with my BS and PS. Hopefully surgery won't be far off. I want this done- I'm afraid it's spreading daily! I'm afraid to do yoga for fear the increased blood circulation will stimulate growth- am I crazy ?
I have talked about this before, but thought those newbies struggling with dark thoughts may benefit. My husbands aunt had bc about 20 years ago and when she found out about mine she gave me a great piece of advice. Start a grateful journal. Everyday write one thing that brings you joy, makes you smile or gives you peace. It doesn't have to be a long drawn out short story- maybe just one word. Or a picture. But do it every day. I did this with my first journey. I was afraid depressed and in shock but I figured that it would be worth a try- my aunt seems very happy now! Well at first it was hard, but as I became aware of my mission to find something to write about, I started looking at the world a different way. I was for the first time living for today. As soon as the pressure of living for all the things I want to do tomorrow was gone- I became much happier. I no longer worried about if I would be around in a year to do this or that but can I top the singing birds this morning? Maybe the smile of a child or the beautiful sunset? Anyway, I urge anyone willing to give it a try and see if this helps bring you up!
There is a good app called Maxjournal that allows you to post pics in your journal. I did this when my hair started growing in!
Arlene there is so much information to digest with MX.. I know it's hard, but maybe go through some threads and see if you get a feeling from one over another. I guess I'm lucky in a way because I can only have diep due to the amount of RX I had.
Keep smiling
Shari
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Thank you, All! Trying to keep my chin up. Figured I would just freak out a bit this weekend, til I can get the PS appt, hopefully they're in on Monday. My surgeon is having me call another NyU doc. Read about him, seems like a good one. So, I will try to see him ASAp, and get this show rolling. Shari, I think the same! I don't ride my bike as hard because I envision cells escaping and invadind the rest of my body! Crazy, I know!
I will have to see what the PS recommends, and take it from there. Not looking forward to these multiple surgeries, chemo, and not knowing if I need rads. But it is what it is. I understand implants are "easier,?" Is that true? That was the first thing my breast surgeon mentioned. Expanders and implants. Hmmm. Maybe I can have some nice "Cs" when this is done? Oh boy.
I do keep a journal, and Shari, going to try your advice. It's just I haven't been too happy with these changes and the waiting. But I will try to look for the good in every day.
Slapped on a nicotine patch today. It's helping.
Thank you all so much!
Arlene
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