Calling all TNs
Comments
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OK ladies I am getting really frustrated. I have resized and resized my avatar and it shows it in the browse area but when I click save it will not save..............any help please?
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Are you changing the ppi or inches?
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I did, I have it down to 60 X 80. I guess it was PPI because it is a tiny picture
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I believe I cropped mine to 1.5 x 2 inches at 72 ppi. I wonder if there is a problem with the file name? You shouldn't have any unusal characters in it (like>*" etc). Just letters, numbers and periods (dot). You might want to just try renaming it anyway just to see if that helps.
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Hi Ladies sailed into work today to find my work mate crying on my shoulder. She has just been diagnosed with a breast lump and also a lump under her arm. The radiology report says suspicous for malignancy. She is to have a punch biopsy this coming Wednesday and then the wait for the results. I was able to reassure her quite a bit and she seemed happier but I feel so bad for her and what she may have to go through. She is 53 and already suffers with myaesthenia gravis an autoimmune disease. When will this disease stop. I am just so over it and I just hate the word cancer.
jenjen - hope you are feeling ok and not too sore from your surgery.
Stupidboob - where did you get your recurrence. Was it in your other boob. I was diagnosed just around the same time as your first diagnosis. Stage 3, Grade 3a and I had taxol. So keeping my fingers tightly crossed but have been feeling a little bit unwell lately. Just not sure if its psychosomatic or not and I'm talking myself into something because I can do that, anyway I hope thats the answer.
Bak - I hope your hip pain is a bit better and you are able to get around more
Thinking of you all ladies.
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Finally got my avatar to load. This was a photo shoot for breast cancer survivors at a local shop just for fun.
Cocker Spaniel I have a regional recurrence in the lymph nodes and pectorial muscle up to the collar bone. Don't just think it is nothing. I never thought it was back but I had been telling my hubby that I did not feel right. I could not explain the feeling just not right, so when they told me I was not surprised.
I have been thinking of figuring out how we can get doctors to do more scans and follow us closer. I think that is why BC and especially TNBC patients lose the battle. We NEED more attention paid to us. Whether it is a scan or ultrasound or whatever..... Bloodwork is not enough. NOTHING showed up in my bloodwork. My MO said that they are looking mainly for things to red flag that it has gone to the liver or bones. That is what shows up in the bloodwork. If it were not for my surgeon following me this far out, mine would not have been caught.
How do we get something started to make them pay us more attention?0 -
I am wondering how many of us had path reports that said the cells were ER+ but a very small percentage? If so, how many were told they had to take Tamoxifen or Anastrozole?
I did the AC/Taxol as well but have been on Anastrozole for 14 months. My MO said "you have done well the first year...better to continue it unless you really can't stand the SEs". Other than losing hair and bone mass...no other noticeable SEs.
Have any of you taken those meds, or do I just have a confused MO?
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Stupidboob: I can understand your frustration and I am so sorry you are dealing with this again. It's everyone's worst nightmare.
However, I'd like to say that there is no evidence that routine scanning following initial treatment for early stage BC (including TN) has any benefit with respect to treatment decisions or patient outcomes. This is why standard followup care practice guidelines are: regular mammo, physician visits with clinical exams and (sometimes) blood tests. You may be interested in this: http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-after-follow-up and also this: http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2011-04-Triple-Negative-Breast-Cancer#testing
It's good that your surgeon was following you, and as these links show, regular doctor-patient communication is likely the best early-warning indicator of recurrent disease.
Also the neulasta shot is used to boost white blood cells (to fight potential infection); I don't think there is any relationship to cancer cells, other than the fact that neulasta enables us to take larger doses of chemo more frequently which can be helpful in killing aggressive cancer cells. As I said in an earlier post, the original research on that taxol article does not "condemn" taxol as a treatment against fast-growing cells, but suggests that in the future (after human trials) another agent needs to be added alongside.
I try to remind myself that there is no point in looking backwards... as my very smart and wise BS said to me once: "We make the best decisions we can with the information we have at hand." We need to get to a place where we are at peace with that.... and that is very tough I know, especially when you are dealing with a recurrence. It's human nature to look for a reason to explain things... something to blame... and the frustrating truth about BC is that no single thing explains it, and no single thing is to blame.
I wish you well, and hope your treatment is gentle on you, and wickedly hard on those mets.
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Thanks Luah.........all that makes sense. It is just frustrating in my mind right now as there were no symptoms or anything to discuss with the doctors and had we not caught it on the Ultra Sound (most surgeons I understand drop following at one year) then when they did catch it there may have been no hope. That is what frustrates me with the whole "never scanning unless we suspect an issue". I am giving God the credit here because it just simply would not have been found and that is what scares me for the future and especially since mine as already returned.
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Hello Ladies,
I haven't posted in a long time but I do read your posts and my heart goes out to those who are struggling through treatment and especially those with reoccurances.
This week, three years ago, I was diagnosed with BC and had a lumpectomy and began this journey. I feared I would not reach this three year mark. Today I am healthy and though I still tire more easily, mostly I feel fine. For those of you recently diagnosed and scared, remember the odds are on your side and most likely this will recede into your past. Be encouraged!
Again, my heart is with those with reoccurances and I hope the advances in treatment will prove an answer for you.
Regarding the Taxol question, I believe studies have been done comparing AC to ACT and even for TN it is still more effective. I bet these studies could be googled up if someone wanted to take the time.
Best wishes to all.0 -
This is VERY interesting and new:
http://www.cleveland.com/healthfit/index.ssf/2013/03/copper_depletion_shows_early_s.html
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Wow exciting indeed...what made me a little bit angry was that this study was done in 2007 and it is still not available. Gotta love the way this system works. Is it because there just is no money in a cancer free society? Sorry ranting...just burns my butter!
Maggie
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I don't think the study was done then, it was just that one person had been on it during 2007 and they were still kicking it fine!
) This was just published in March 2013. I also emailed the doctor involved to see when/if phase 3 was going to start. I'll let you know if I hear anything back.0 -
Hello Everyone!
I was diagnosed on 2/14/13. Never thought I would be in this group. Yet here I am. I come to this site all the time and read everyone's story. My thoughts and prayers are with us all. I think I spent two weeks in almost denial of the diagnosis. I'm stronger today, I will be stronger tomorrow.
I believe I will overcome this and be cured. I believe I got this TNBC from my cell phone. I always stored my phone on the outside of my left breast in my bra. Exactly where the cancer is.
I found the cancer, didn't show up on mammogram, on ultrasound they said it was a fibrodemia tumor.... The biopsy proved them all wrong. Sometimes you have to fight to get the right tests! I knew this lump was new and wrong the moment I felt it.
I am here fighting with all of you my new friends!0 -
Idawson - welcome to the site. Sorry you have to be here, but you will find a tremendous amount of information from all the ladies on here. We are all at different stages of our journey with cancer. I am just finishing up my radiation treatments having gone through dose dense chemotherapy. I had a lumpectomy prior to my chemo. From your stats, looks like you are doing chemo first. Bring all your questions here - we are all here to help each other.
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Stupidboob when I asked my breast surgeon when I saw him last how do I know nothing is going on in my body if you don't scan believe it or not his answer was, if the cancer does recur it will be better treated when it is bigger and you had symptoms than if we scanned and only saw a small recurrence!! Can anybody make sense of that cause for the life of me I fecking can't. Yes how do we make them understand that we need more follow ups and reassurance. Us TN's need something more than what they are offering. I wonder how they would feel if it was a member of their family.
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Cocker Spaniel I am on the phone right now with the ACS seeing who and how I might start a petition or something to make them treat us differently and not wait until it is to late to find out that we have a spread or recurrence. I am not sure how to answer your question but the only thing they told me was that, that was one of the reasons they don't like to scan because if they see anything from small to large even if without a shadow of a doubt that it is not cancer then the patient has to do through biopsies and etc. just because they are a cancer patient. There is a program through the ACS that helps us get the word out so they are turning it in as we speak it is called American Cancer Society Cancer Action Network known as ACSCAN. He said they may call me but they may just add it to the protocols they try to get the medical field to see.
Idawson welcome to the group I am so sorry you have to be here. Just plain sucks but at least you are reaching out.
My hair started falling out today so I will soon be sporting a new look soon.............:)
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Stupidboob, you will be as beautiful as ever!
Phyllis0 -
Thanks Phyllis.............I will be shaving it soon, not going through that emotional turmoil again. I did not listen the first time, but I will this time.....I am supposed to be cleaning and here I am playing on the computer.....:)
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Hey gang,
I know I am a few months away from this but I would like to start gathering information on radiation. I did not do it the first time, but this time I have too. I want details because I only thought it burned you, I did not realize it makes some sick, messes with your memory and makes you extremely tired. Please share your story and any tips with me so I will be ready when the time comes.
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SB- I sailed thru chemo the first time. The worst part was irritation to my shoulder from keeping my arm above my head on the cradle.
Hope it goes as well for you.
Phyllis0 -
I got very tired about 2 weeks into rads (7 wks total)...turned nice and red but not burned. Had some swelling around the ribs that lasted a couple of months and that was it
Mags
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stupidboob...I had 16 rads after chemo and I didn't even have any pinkness. I was a tad tired but I am also 69.
I was 68 at the time. I swear by using Glaxal Base (available at CostCo or any pharmacy) twice a day during the treatments and for 2 weeks after was my saving grace.
Idawson...welcome...sorry you have to be here. It seems everyone has a different treatment. Adagio is the first one I have seen that has the same DX and TX as me. Disregard my ER+ because I am only 2% and for the last year I have been taking Anastrozole ...why I am not sure.
Is anyone that was DX'd with just a slight ER+ taking any antihormonal? I feel really alone here!
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Schatzi14- I was 5% ER+ and my MO told me it is so weak we are just going to treat this as a triple negative. They never discussed hormonals with me.
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Stupidboob - I had 25 rads and 6 boosts following. I didn't have as much energy as usual, that was all. And my skin got pink. I second Glaxol Base - that's what all the rad nurses at my cancer center recommended and it worked. Really the worst thing about it was having to go to the hospital every day for 6 weeks.... but often I walked the 3 miles round trip for exercise (just more slowly than usual, lol)
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Stupidboob I had 25 rads. We have a facility here that is marvellous. You go on the Monday and then home after rads on the Friday. Spend the weekends at home and then back on the Monday. I was away during the week days for five weeks. It was like a holiday resort, just simply gorgeous there. Lovely big rooms with ensuites. You had your rooms to yourself. I honestly did not have any trouble with rads, just a little bit pink. No tiredness cause it was like a holiday. I drove myself the two hours there on a Monday and drove myself home on the Friday with no trouble. We could buy a huge jar of cream at the reception for $5 and I am still only a quarter through it yet I use it everyday. Having said that there was one lady there who was very very fair skinned and she did burn a bit but other than a bit of itching she had nothing else. All of us there were ferried to the hospital, only five mins away, had our rads and was then ferried back by mini van. It took half an hour at the most then you had the rest of the time all to yourself. It really was a lovely place to have rads. I made lots of friends in that time and still keep in touch now. So nothing to report from me as I had no side effects whatsoever. Oh and they provided all meals if you wanted them and every drink was available for you at any time day or night. We even had happy hour at 5.30pm.
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I have been in contact with Dawn recently. She had a progression on her last drug. METS to to torso. She will start a new treatment soon. She's still up for the fight!
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OBXKaren Thanks for the update on Dawn. I miss her attitude here. Please give her a hug for me when you contact her again. Also, thinking of you and your own challenges and giving you a loving hug, too.
I'm rocking 60 rpm in my rocking chair waiting for my PCP to call with results from my parathyroid gland and labs. My non-existent symptoms are getting worse by the hour. Mental case for sure.
Greetings and good wishes to all. Jan
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Jan - go wash an Ativan down with a nice red!
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