Calling all TNs
Comments
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Hi terrylin,
You've got the exactly same type of cancer as my wife's..
We were also told on april 10th, 2013 as well!!
However, we have been told to do chemo first then surgery.
Did you make the decision to have surgery first or your surgeon make that?
Yeah, I totally know how you feel... We are supposed to be in Hawaii for our 10th yr wedding anni now..... Oh well, 11th yr wedding anni next yr! That's our goal!
Let's keep in touch!0 -
Hi Terrilynn. Isnt it all just overwhelming?? I love coming here to see all these fantastic women who have already been through what we are starting, it DOES help !
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Terrilynn - welcome. WE are here for you!
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page 700!!!!!!
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Gilly- thanks for noting that! What a wonderful thread we have here- many thanks to Titan for starting it!
Welcome to all the newbies. I know this is the last place you really want to be, but you will not find a more caring, supportive and knowledgable group of ladies! Remember- no question is too personal or stupid to ask!!
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wrenwood47 thank you for the information on the deodorant issue.......I will have to try that.
lauralind5 there are several "they say" that deodorant with aluminum in it can clog the pores and then this allows stuff to just sit and turn cancerous. I have talked to several people ACS, oncologist and etc. that say there simply is not enough proof in it for women to worry themselves, but being a woman with breast cancer it does make one wonder. Supposedly men have less risk because most of their deodorant lies in the hair. I have just been trying to find a natural one that works but does not create its own stink.
I wish all the newbies good luck on their path.........you will get so tired of hearing "its doable" but then later you will find yourself saying it to someone. I wanted to smack anyone who said that to me because I felt horrible and I did not want to hear it..........:) I am sorry you all have joined the club no one wants to be a part of.
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I don't normally do this with people I don't really know but I need to vent. I let some of this out but some I hold in. 2013 has sucked for my family. I am mad as hell and about to break. There is part of me that says why be mad it won't change anything but there is part of me that wants to go on a mountain top and SCREAM until my body can't scream anymore. I lost my dad, my aunt and my beloved 16 year old furbaby. Had cancer surgery done on my other girl and now she has been acting a bit off on certain days and of course I fear the big C.....
My cancer returned and my brother is going to have to have open heart surgery......:( My hubby is not being as supportive as he was the first go around and I am scared..........I am scared to death. I am scared of death. I am just not sure how much more I can take. I am ready for the gray cloud to leave my family. No, we are no better thay anyone else but enough is enough. Hubby has lost two uncles and we are just tired of DEATH!!!
I find myself getting more and more consumed with the thought and I know that is not good for me. I keep saying to myself.........you are still here and be thankful for that. I am but then that evil thought starts again.
I am MAD!!!.............I am mad at the situation, I am mad at myself and I am mad at all the people who have once again scattered upon my diagnoses. People treat us like we have snubbed toe.....I think it is because so many people now days have cancer that people think, oh she will be fine, it is just cancer and they will treat it and she will be fine. Well, you know what I HOPE THAT IS THE CASE, but you all know we have lost to many on this list alone. I guess I just get tired and hurt at the fact that people act like I have a cold.....not sure if I don't matter enough to them or I matter to much and they can't handle it. Either way it hurts and I feel so alone. Even people who have fought the battle and won (as of now) offer no support. Am I just a reminder to them that it can happen to them as well. I am sorry to air this with so many newbies but they too will endure these feelings sooner of later. I hate that I am having them but damn it to hell I am HUMAN, I have feelings. I feel like I am all alone in this this time. Ok, maybe I will end my pity-party but not sure. Thanks for letting me vent. I am just mad at this whole situation and being agoraphobic does not help because I am yet again being forced to face fears. I am mad because I won't make myself lose weight that I need too. What is wrong with me. I always thought, that if a doctor told me I had to do it to save my life I would be able to do it. I have not. Who knows maybe if I had made some changes I would have not full blown cancer that spread....who knows I could be skinny as a rail and still fighting it. One never knows and that is the sad thing with cancer we are damned if we do and damned if we don't. I hate it.....no right or wrong answers. Pardon my language as I try not to use bad language but again I am just mad...........(should not let it get to me)0 -
Hello. This is a new forum for me. I just found out I have TN BC on April 18th,2013. I am 40 with 2 daughters, ages 1 and 9. I had a tenderness that wasn't going away in my breast so I went to see my Dr who recommended a diagnostic mammo and ultrasound which found a calcified area that was then biopsied and turned out to be cancer. I'm very nervous about this diagnosis, especially because I already have a heart condition/ family gene (ARVD) that took the lives of my mom at 47 and my sister at 20. I have a heart defibrillator and I found out that since my cancer is in my left breast that in order to do radiation, they might need to relocate it. Not an easy thing to do since the leads are hooked up to my heart and I've had it in place for 6 years since my heart attack. I also hear that chemo is not always easy on the heart. Has Anyone on here had something like this - a heart condition and went thru the rad and chemo?? Just when you think you've been dealt enough in your life, you get dealt BC. A friend of mine posted this phrase on my Facebook page: "If God only gives us what he thinks we can handle, then he must think I'm a Bad Ass!" Lol, thought it was appropriate. Especially since I have also lost my younger sister 4 years ago to an undertoe / rogue wave while she was vacationing in Mexico, and my Aunt who was like a mom to me died from breast cancer 2 years ago when it came back in her liver. I know that I have to beat this because I don't want to leave my girls without their momma!! I am scheduled for a lumpectomy on May 23 but if it turns up that I am positive for BRCA 1 or2, I may opt for a dbl mastectomy. I am searching out as much info as I can digest and I am getting a 2nd opinion on Monday. I'm glad to have found this discussion forum but I'm afraid I might spend too much time here...
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Stupidboob..haven't had time to read your vent..and ready to go to bed..but I did want to respond to your question about deodorant.
there is alot of stuff out there about antipersperant (spelled wrong) and deodorants...actually I stopped using it for awhile...lol..now I wear my husband's deodorant....it just seems safer to me...sweat..without the stink
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Liz1973 I am sorry you have to be here and after reading your post, I feel mine is not as bad. I have a few little things going on with my heart but not like you. Adriamycin is the hardest on the heart from what I can understand but some oncologist are rethinking this one anyways so maybe they will not use this one on you.
Thanks Titan I will have to look into the mens..........:)
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Hi everyone,
Is anyone "older" on this thread or have other health issues and been through chemo? We have 5 days to decide if mom will be getting it.
My mom had a stroke last June. She is 73 and, before the stroke, was fully independent- tennis, babysitting, bike-riding, etc. Now, I am her live-in caregiver. She walks with assistance and has difficulty communicating/speaking but is able to understand us more and more. She goes to physical, occupational and speech therapy. She had a lumpectomy in April and is triple negative, Grade 3, 2.7 cm.
The MO said his biggest concern is her being able to communicate how she feels. Abstract things are difficult to explain- like, numbness and tingling. Dizzy and nauseous I've been able to communicate through gestures but who knows what she might be feeling with chemo and not be able to tell us accurately.
She has really thick hair that all her shower aides have complimented her on. I know she really identifies with it. I also know that her sister will lecture me on putting my mom through this if we decide to do it. Her sister (whose son died of cancer) thought getting a biopsy was a bad idea- "that some people just live with it." I drew pictures for my mom for her to choose lumpectomy/mastectomy. I will certainly talk to my mom more about it but ultimately my brother and I will be deciding/influencing.
My fear of course is if one of the rare side effects happens or some terrible infection or complication. On one hand, she is just getting back on a consistent therapy schedule after some medication side effect issues so it is difficult to think about another detour, and we have been looking forward to enjoying summer activities and taking a trip. On the other hand, I know that chemo is her best defense for the future. The MO said some people choose quality of life and skip chemo (though he says it will be beneficial and recommends it for mom.) I should've asked- that's a few months quality of life, right?
She would get Taxotere (docetaxel) and cyclophosphamide. Skipping the anthra....drug due to risk of heart damage.
Sorry for the long post. Any comments?
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For those searching for a deodorant, I have tried many which made me actually stink worse! Then I finally found one that works! If you have a Wegmans near you, go into their organic section and there is a deodorant called Kiss My Face. Make sure you get the roll on because that seems to work better. It has no aluminum, parabens, phthalates, etc. No more stink, but still sweat a little.
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StupidBoob -- You have been through so much in such a short time -- don't worry about venting here to us. We get it. I am praying for a ray of sonshine to come your way soon to cheer you up. Don't beat yourself up too much on the weight issue -- I weighted 114, exercised every day, ate well most of the time. I still got it. I can relate to people thinking, "oh, it's just breast cancer, that is so curable today." Well try having it and seeing if you ever again say "oh it's just breast cancer." I'm fine with someone who's been there telling me that I can make it through the treatments and things like that because I know they know and understand. I have a friend people would not recognize if they saw her without her makeup. When I told her I was losing my eyelashes and eyebrows, she said, "oh that's not so bad, they will grow back." I wanted to scream at her, "let it happen to you and see if you still think that." She sells Mary Kay. What I needed from her at that moment was to give me some sympathy and offer to help me with some makeup ideas. Oh well, now I'm starting to rant.
Liz1973 -- so sorry this has happened to you along with your other health issues. Most of the time if you have a mastectomy you don't have to have radiation (not always the case if lymph nodes are involved). Talk to your doctor. That might be the safest route for you. This is a wonderful forum. It has been such a blessing to me.
Regbeach -- wish I could offer some help. What a tough spot to be in. I can offer prayers as you make your decisions. Maybe getting a second opinion will help with your decision. You can always stop treatments at any time if they become too much for your mom.
When I went for my radiation test run Friday, my RO told me that she just was not comfortable with doing the treatment at that facility (they are replacing some of their machines and they are down to one machine). She was afraid that we would be having to take too many breaks because of burning and irritation. So, I'll have to go to a clinic in a city a little further away. It's really not that much more driving time -- maybe 40 minutes compared to 25 minutes, but more traffic to deal with. They sent me on over there Friday afternoon to have my markings redone and I'll start treatments on Tuesday instead of Monday. At least I'll still have my same RO. I really do like her.
I hope everyone has a great weekend.
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To stupidboob Vent all you want...this is the place for it. We all try to understand the awkward comments we get from folks, but it sure is hard! I REALLY had problems with communicating with those women who only had a lumpectomy and radiation. They didn't know what HELL is.
I never considered the deodorant problem! I thought I stank all over while I was doing chemo...could hardly wait to get to the shower in the morning to help the situation. I remember saying to my DH, "I look bad, I feel bad, and I smell bad." And he replied, "You don't smell bad." But I sitll thought I did.
to regbeach - Sorry you are having to make those decisions for your mother. Other family members may try to out guess you, but it is always a guess....what to do, what treatments to follow. Your doctor is your best guide, and you can always refer the rest of the family to him/her. My doctor said "mastectomy, chemo (Taxotere, Cytoxin), and radiation." so I said "OK"
By the way, I'm 76, have had heart surgery( 3 valves repaired), have a pacemaker. Fortunately, this BC was on the right side, so radiation was no problem. Haven't had a stroke! Have had 2 TIAs but now I take warfarin to try to prevent any more. Nat
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welcome Liz. This is so hard in the beginning to know what is going to happen. Once you and your doc get a plan in place it does settle down just a bit. HUGS to you
stupidbood---this is the best place for venting. We are the ONLY ones who understand and have felt the way you do right now. I am guessing that your hubbies lack of support stems from the deaths around you both. He does not want to loose you and therefore separates himself from the situation. Be strong my friend. This phase will pass too. Cancer does change us and sometimes those around us. For now scream all you want- you deserve to get it out. Wishing you all the best as you continue your fight to conquer the beast HUGS to you too!
Maggie
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Thank you, I sure appreciate it!!
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Erg each, very hard for anyone to decide. You're suggestion of asking how many months (or a range of months) your Mom would have if no chemo sounds like a question you should call the MO to ask.
Also, since the stroke can your Mom read? If so she could nod yes or no if you wrote down the choice, once you get an answer to the above question.
Sorry, these two suggestions are all I have.
Let us know whatever is decided or more questions. We are here for you and your Mom.
Peggy0 -
Hey everyone..Happy Mother's Day to all...doesn't matter if you have kids or not..you still all have a mom...my mom had Hodgkins disease 10 years ago and now has a lump on her neck..the surgeon is leaning towards a weird type of muscle...she had a scan on Friday...hoping that is just a muscle...she has no other symptoms at all...just that freaking lump thing.
On another note my daughter adopted a kitten today so I'm the proud to say I have my first grandcat...lol
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Thanks Titan. Sending good thoughts out to your mom. Wishing you and the other mom's a special day.
xxxooo0 -
thank you for letting me vent.............:)
thanks for all the tips on the deodorant
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Stupidboob - Yes, I agree it is just way too much for any girl to handle so much. I am so sorry that you are experiencing so many challenging things in your life, all at once. All I can do is send you some warm Hugs! Hang in there, my friend, and just pray really hard.
Ladies, watch this incredible video. True Story of Cancer patient, Anita Moorjani.
An Indian woman in Hong Kong writes a best seller "Dying to be me". The book is now published in 28 languages. The author narrates a personal account of death after life and then life after death. She is traveling worldwide narrating her experiences and that now she is a changed woman, learning to live life the way it should be lived.
Watch this incredible video.
https://www.youtube.com/watch?v=y1VG7895XnU(I hope the link works, as I had to type it. With firefox, I am unable to cut and paste things here).
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jhj - I was also advised to have chemo first before surgery. My BS and onc felt that shrinking the tumor first, would possibly improve the chances for clear margins at surgery. It did. Unfortunately, although the chemo shrunk my tumor, it did not kill all the cancer cells in the tumor.
Best wishes that the chemo works completely for your wife.
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Hi I was just dx on April 26. I'm 30 and trying to make up my mind on a doctor/hospital. Mine is 3cm and going into my chest wall so I need to start chemo ASAP. Only concern with doctors are one onco wants to do A&C every other week 4 times then taxol every other week 4 times and the other onco same A&C then 12 weeks of taxol instead of the 4 higher dose. Which is better? I'm so confused. And the one that wants to do the 4 every other week is a great big hospital and breast cancer oncologist.
Anyone have any insight?
Help. I know I will be fine with either one I just can't seem to make up my mind.
Thanks in advance0 -
CN - so sorry for your dx. I am also sorry I do not have any advice. The choices are SO hard to make. I often wish there was a set course of treatment with BC, but there is not. I am not saying that I wish there were no choices - just saying it's so hard to make them. I had to decide between mastectomy and lumpectomy, and recently, chemo or no chemo. I begged my BS to help me decide - she absolutely would not. She would only present the research for both and then told me, "Its your body". I felt so alone in making the decision. I needed her and she was not there for me. There have been many other decisions to make in-between. Sometimes I made the correct choice and sometimes I had to try something else. This thread and many others are very supportive. Please stay with us.
Sherry
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Hello CNmylife - I am so very sorry to hear that you have been diagnosed. For God's sake you are only 30 years old. Do you know your hormone status, is it TN? I am TN, my tumor was approx. 3 cm as well. I was treated in 2010. I did AC/Cytoxan for 4 weeks, every other week, and then I did Taxol for 4 weeks, every other week as well. At the time I was getting treated, there were some women who were doing weekly Taxol. Taxol can have neuropathy as side effects. Some women suffer from severe neuropathy if they do weekly Taxol, therefore, every other week works better for them. I honestly don't know whether doing it weekly has a better outcome which is a question you should definitely ask your Onco. I never got sick once during my chemo, as I think that my Onc. were the best they come. With Taxol cocktail, they mixed Zantac, Benadryl, Decadron, and Kytril in the cocktail. I think that things like Zantac and Benadryl greatly helped me from getting sick. I hope this info. helps. Please don't be scared to ask questions, I know it is hard to think about questions when you are going through this, but write them down, everything that comes to mind. If you forget, fax your questions to the doctor and get answers in writing. Good Luck, young lady! By the way, the treatment I had was called Dose Dense.
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Hi CN, there are many of us on this thread that had one or other of the treatments you have been recommended. Dose Dense AC x 4 followed by DD Taxol x 4 or Weekly Taxol x 12. Both are normal treatments for TNs. You might want to ask why an oncologist is suggesting one rather than the other, but in outcomes I believe they are exactly the same.
edited for typos
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Hi ladies. I'm sure I have read posts on here about lymphoedema. My arm which had the nodes removed has swollen up. Not too painful at the moment but you can definitely see it is larger than my other arm and my medi bracelet and watch are tighter. I have looked at the lymphoedema forum on here and didn't find much help. Anyone got any suggestions. I really don't want to wear that sleeve at this stage unless I have to. I also read that the cancer can be returning with this, anyone heard of that??. Annie
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Hello to the new ladies and gentlemen that joined our TN thread. Glad you found us.
Cocker, I have no personal experience with LE but I would highly recommend that you get into the BS or PCP and have it looked at. Even if you think that it is only slightly swollen. LE needs therapy to keep it from getting worse. Better to treat a problem while it is small and new than waiting until it becomes unmanagable and painful. Also, i do not believe that LE is a sign that the cancer is back. So get going already and get an appointment to get things checked out.
Hoping everyone had a peaceful Mothers day. I got to see my Navyson"s face over skype. He says that he should be back in the states sometime in the next 3 to 4 weeks. YAAAY! So this Navymom will be booking a flight to greet him when he puts his feet back on USA soil!
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CS- First, don't wear your bracelet on that arm anymore. Anything that makes restriction isn't going to help with the swelling. I have LE on my right arm, hand and I have to wear a sleeve and glove. You just wear the sleeve in daytime. At first, I did not like wearing it but now, I don't feel good unless I wear it. You get used to it very fast. I know the LE thread was very useful for me. Some of the girls on that thread like "Binney" answered alot of my questions about it. I did go too an LE therapist for LE massages/drainage. It helped. Talk to your doctor about your arm and ask to see a LE PT. Good luck!
And no, I never heard anything about cancer returning with LE. I really don't think it has nothing to do with cancer returning. Don't worry about that. It's just lymph build up because your nodes have been taking out. Nothing more...
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CNMylife - I was glad my onc decided on every two weeks for Taxol. It's a lot to have to go 12 weeks in a row after doing AC. Some oncs do the 12 weeks of Taxol first, but AC is rough and I was glad I did it first while I still had all my energy.
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