Calling all TNs
Comments
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On the chemo comment, my onco said that 5 years ago they would have sent me packing without chemo (and just have radiation), since my new IDC tumor was less than a cm. However, being Triple Negative, he said we have to be aggressive. Plus, I had a recurrence 8 months after a bmx for DCIS, which he says is extremely rare.
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kitty, I have been following you on exchange city and you really are an inspiration to me. I was recently diagnosed in March with bc and recently found out i am also tn. I am a mess thinking about it. I was fine until I found out I was tn. You are so upbeat and you give me hope and inspiration that I can too be that way soon!!!! You go girl. I pray for you to be just fine!!
I am going for all of my scans next week, ugh, scanxiety!!! I am freaking out of course but hoping for the best, I had no nodes involved either so hopefully that is a good sign!!!!
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Jenni - I am also supposed to get scanned next week. I haven't got my appt for the scan yet. My onco is supposed to be calling an onco at Sloan Kettering. He said that if they want to see me, they would do the scans there. I'm a little freaked out about the scan. Every thing that hurts makes me think that I might have cancer there. The testing and waiting anxiety is so scary! My husband is really upset about all of this. Last night we were talking about chemo and he got all teared up about the whole cancer thing. I'm just trying to take it one day at a time. Since I am waiting for the scan and I can't get treatment yet, I feel like I'm on a vacation from my cancer. Stayng positive is the only way I can cope!!! Good luck to you. I will pray that our scans come back clear!!!
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jenweg~ I was ok about having bc (coping really well) 'till I found out I was TN too. I work at a medical school so I knew how important pathology is... bummer. However, I can tell you that chemo works wonders on TNBC. And time is on your side. Really. Plus, a perk of TNBC is that after 3 yrs (some even say 2), you odds of having a met drops like a rock. That's pretty cool and really gives you a good time-reference for looking ahead. I still worry A LOT. But, with each set of scans, I feel good. For instance, a yr ago, I wouldn't even consider having recon because I didn't want to "waste time"... but now, I feel like I can look ahead. There is a glimmer of light at the end of this long, dark tunnel.
{{{hugs}} to everyone!
Hope you all have a great day!!
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Hi Michelle,
I have now past the two year mark, quickly coming up on 2 1/2 and thinking forward to next summer and the idea of B mastectomy. I was told last January to "come back in a few years" when I consulted with a team in my area. I could read between the lines "come back in a few years...if you are OK." Well I am here to say I am OK, and my boss is a 5 yr + survivor as is my aunt by marriage (both of TNBC). So I am really thinking about it.
My greatest reluctance is that I am feeling better than I have in 2 years and don't want the laying around recovering phase. I too have put on about 16 extra pounds since my first chemo...most of it during a time when I had to take mega-doses of prednisone for lung inflammation secondary to the taxotere. I also think the chemo-pause is making the fat just pile up on my abdomen.
I am committed to working hard this summer to take off some weight and to continuing my efforts to strengthen my "core" and stamina...just like everyone else
Kathy
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BTW...my friend was told by the Hopkins guys that her lesion was not "kinetically" active and to come back in 6 months. She is breathing a great big sigh of relief.
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heidi, I'd love to see your foxy family. You know, I know of three people now that have some sort of seizure in the past two weeks, all unrelated to cancer. Very strange. I hope they can figure out what caused your seizure so you can prevent that from happening again. Very disconcerting. Hi Kittycat, so sorry you are in our sucky club. I also had a bilateral masectomy. It is rare to have a tumor show up in the scar tissue, thank goodness it was detected while fairly small. Did you get reconstructed immediately or did they find the tumor in the process of reconstruction? I did not get reconstructed yet. I just recently noticed a lump in my scar tissue. An ultrasound revealed that it is a cyst. I went to see my breast surgeon concerning the cyst today. He called it a "seroma" and said it is 8 cm! He drained dark fluid out of it and will send it in to be biopsied, but he said not to worry at all because he and my onc are pretty dang certain it is a cyst and was probably there since the surgery. Titan, stay safe in Ohio!
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kmartin! Loving the 2 1/2 year mark! I get really nervous about my positive node status and I love to hear how so many women are doing beyond well.
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Violet - yes, this is a sucky club!!! I had immediate reconstruction. The cancer had to develop between December and now, as I had my exchange surgery in December. My PS would have found it. As a matter of fact neither he nor I felt it at my March appt. That is frightening for sure!!! I'm glad it wasn't any bigger!!!
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Hi all, Well here I am again to remind you that many long time survivors don't come back. I WAS TN 23 1/2 YEARS AGO at 39 years old. After 18 years I had another primary in the other breast, in September I will be 7 years out from that one. My daughter is 6 years out. She was 34 when diagnosed. Back 23 years ago I was stage 1 tumor was 1.6cm. If the nodes were clear no cemo. Did lump. and radiation. The second time tumor was 2 cm no nodes and I refused cemo. This time I had bi-lateral mx. My daughter was stage 1 but she had cancer in both breasts, she had bi-lateral and chemo. We are both doing fabulous, she is an avid runner and just finished a half marathon. As for me I'm just old, drink wine everynight while preparing dinner with my darling hubby and don't think about whether the wine is going to get me.
I'm pretty positive about TN because it is CURABLE can't really say that about other cancers.
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Thanks Noni! Love hearing from you...just keep popping in now and them and keep reminding us! We appreciate it!
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Thanks so much Noni!!! You are such an encouragement on this dark road! Made me feel good to read this. I truly appreciate people telling their successful stories here.
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Good luck Kitty Cat! I too live in Las Vegas and found a wonderful oncologist, I just love her! I've heard she's one of the best in LV. I'm so surprised to hear you were diagnosed so soon the 2nd time. Hang in there! I truly believe a positive attitude believing we will kick this disease is crucial to our healthy recovery.
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Thanks Noni, it is reassuring to hear about a TN without having had Chemo (like me) and being a long-time survivor!! Thanks again for posting!!
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Thanks for the encouragement Noni!!! Love to hear the good stories
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I just have to say that all you ladies are amazing. I try to push this cancer thing out of my mind, but every now and again, I get on the boards and read to see what everyone is up to. It sucks to see so many "new" names on here, but it is reassuring to see the success stories.
I have to say, I may be a wierdo, but I really liked chemo because I knew it worked. I wish that I could of had a few more rounds of it, just to give the cancer the knock out punch, but it is nice to finally have some hair growing back in.
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So..... this all really sucks!!!!!! I do have a question for all.... what types of scans have you had....and why? I am 2 years out right now, my onc pays attention to (blood) cancer markers(which seem to be fine, although I have no baseline), and is very conservative regarding scans. Because I am trip neg, as well as ER+/PR+,(2 primaries) and I am being treated in a different hospital than I was diagnosed in....I am just really unsettled. The only scans that I have had, are the original dx MRI (none of my lovelies showed on a mammo) and then a bone density scan after chemo, which showed osteopenia. I feel like I am a walking time bomb... just seems like so much anxiety could be relieved by a PET or CT scan. Blaaahhhh! If anyone has any input, it would be much appreciated!
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I was 47 when I was first diagnosed TN. I chose to have a mastectomy and had 4 DD AC and 4 DD Taxol. 369 days later I was diagnosed with a new primary, DCIS, that was ER+/PR-. I felt I couldn't trust my body and chose to have another mastectomy. I then had genetic testing and found out I am BCRA 2+ and chose to have an oophorectomy/hysterectomy to hopefully avoid ovarian cancer.
My Oncologist isn't one to run a lot of tests unless she feels the need. In March I was having neck problems so she had me come in and have blood work and a bone scan. Both came back fine. I only see her every 6 months but she is always willing to see me if I'm having issues...
Linda
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Thank you smith.....I had a bilat. mx and axillary node dissection, so I am just really expending anxiety on mets to other areas. I guess I am wondering about clues or symptoms too. I would very much like to close this chapter of my life, and leave it behind me. I realize that this is a fantasy. I appreciate any input!!!!
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Hi LNFletch..welcome to the tn club! I agree with you on the chemo...you wonder if you had enough..but I guess, hope,..that our oncs know what they are doing..If you read through here you will see that most of us with tumors over 1.0 had aggressive chemo...let's really hope it worked!!! And it is nice to have the hair coming back...I think it is a sign that we need to move on......I started losing my hair one year ago today and now I have a full head of hair..probably 4 inches long. I got it colored which I never have done before...this is the new me!
Smith..I bet your onc will let you have a scan if you request one....my onc said no..you don't need one unless you have symptoms...your onc should tell you what they are but reading on here it is pain that lasts more than 2 weeks, shortness of breath...I felt "weird" a few months before I was diagnosed but thought it was menopause..I know now that if I feel that way again I will be camping out at the oncs office....He said I could have one if I wanted to but they are more concerned about how FREAKED out I get about everything.. he also said that scans show EVERYTHING...most of which are nothing but then I would freak out about them too..oh well..sigh....
Daffodil...there is nothing wrong in closing this chapter in your life..you need to do what is best for YOU....the further you get out from your diagnosis the more you possibly won't need to come on here...but...I think the newbies would really enjoy hearing from you...it gives them HOPE...0 -
As I was stage one 23 years ago I was given 5 weeks radiation and that was it. There wasn't even any real follow-up. When I asked if I needed to see an oncologist I remember my surgeon simply telling me, "why you don't have cancer any more". I went to him every 6 months for 2 years and then every year till 5 years and then I was on my own. My second diagnosis was basically the same. I never had any scans and neither did my daughter. Was told if the pain is consistant for 2 weeks and does not go away then there might be concerns. I know you gals are all probably saying, does she live in the Hicks, actually I live close to Boston and 23 years ago had a second opinion from Dana Farber. I personally don't believe in scans, just causes to much anxiety and sometimes shows to many false positives and that's why most doctors don't recomend them.
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Boy, do I identify with the "don't trust my body" sentiment.
It use to be such a nice body... now cancer, chronic neck issues and seizure. F*ck!
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Hi All,
I pop in and out of these Boards from time to time. Glad to see other TN's actively out here! I'm usually in the chat room for live chats.
A 3rd year anniv. next week for me. I did 10-months of treatments. I started with chemo, 2 surgeries, & rads. I've been doing pretty good on this end.
Next month I have another 6 month check-up. Already have my blood work done. I like to read them and know before I go. That way I can tell what I need to work on and compare them from year to year.
Nice to meet you all.
Lee27
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Thanks for popping in Lee! Do you have blood work on a yearly basis? I was told that I will not have blood work for my check up next week...it has been since September since I have had a full blood work up....do they normally wait one year? I am going to ask because I'm concerned..not sure why I don't have blood tests done..just to make sure that my counts are ok...like you said..if there is something I need to work on ie...iron, D3..etc.
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I never had any bloodwork done for breast cancer until I had a recurrence. Really makes me wonder about my onco. They were giving me the CA125 test for ovarian cancer though.
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Interesting..wonder why..another ?? for the onc on Tuesday....It's just weird...we had to have our blood check before every chemo...I can understand why then..but why not now?
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I can't seem to get anybody to check my vitamin D levels. I asked both medical and radiation oncologists and they said "we don't do that." I asked the surgeon and he said "why would you want to check that?" So, I'm planning to ask my family doctor next week. If that doesn't pan out, then I'll find a Naturopath and pay to have the test done. Grrrr...very frustrating given all the news about Vitamin D and breast cancer. And, I'm in Canada and the sun is not strong enough in the fall/winter months to get much, if any, naturally. Okay my rant is done!
Sherri
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Sherri - do you take Vit D supplements? What kind of supplements do you all take?
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Sherri, I called my medical onc's nurse to request a Vit D test. I was still doing chemo at the time, so it was just one more blood draw. However, I still haven't got results yet, and that was more than 3 weeks ago. Apparently it takes awhile. I'm sure your GP can order up a test for you - it is covered under OHIP, but I think there is a big backlog because everyone's requesting the test. But for us BC sisters, it's especially relevant.
I've been taking a daily supplement of 1000 units, plus 400 in my multi-vitamin and 200 in my calcium supplement. WIth that and diet, I figure I get over 2000 a day - I'm curious to see how that translates into my blood level though, and whether I should be taking more.
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I've been taking 1,000 IU for the past year to two but am also not sure how that translates into my blood levels. I ran out of the tablets so I just picked up a bottle of drops at the health store. Yesterday, I started taking 2 drops a day (2,000 IU) until I can get the levels checked.
Sherri
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