Calling all TNs
Comments
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Stupidboob - so, so happy for you!!
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Great news stupidboob! Yay!
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Stupidboob absolutely wonderful news. Keep it up girl. Might be time for some retail therapy!!
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yahoo Stupidboob! Congrats on still being Ned, hope you celebrate and know we are all celebrating with you!
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thank you gang....................:) I was really scared it was not going to be good from the way I have been feeling. So THANKFUL and HAPPY!!!0 -
Sweet Sadie! Yay!
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Hi Stupidboob - I'm new to this forum, but wanted to say whoowhoo!! Hopkins also has info about broccoli (specifically broccoli sprouts) on their nutrition page. http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/nutrition.html I searched to see where to buy broccoli sprouts, but I guess you have to buy the seeds and grow them.
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I'm still in early treatment but wanted to share some good stuff from last week. Friday I had my drain out (from my recent surgery on June 4th). I feel so much better, I can drive! (Taking out the drain didn't really hurt either). I also got my first saline injection in my TE, no problem. I was filled half way during surgery so I'm pretty full up. During the appointment my plastic surgeon told me he is leaving the hospital where I am being treated and I started crying because I like and trust him so much. But he will be moving to another excellent facility just as near to where I live, (he's not allowed to tell me where, but I can figure it out) so I will still go to him when I get to my transfer, which is a long time away because I have to do chemo). But it was (and is still) very upsetting because I feel like my medical team is being broken apart. Anyway I will be back to work Wednesday which I know will be good for me. July 18 is when I meet my MO, who I've been referred to by my BS. I've read her bio and think she has an excellent background, but I've also read that I should interview others. Quite frankly, I wouldn't even know how to do that, and what to ask. As a TNBC patient facing adjuvant chemo (and I'm not sure why I am adjuvant vs neo, but I asked my BS and he said no to neo, and I trust him, although I don't always get the "whys" that I would like and I just don't think to ask during the appointments.) But honestly I ask a LOT of questions (because I am on Dr Google too much, even my husband said so.) At this point, I am still in the partially terrified state but am getting better each day. My biggest thought in my head now, is, (besides being TN) is how could I have a 3.4 cm tumor and negative nodes, how could that big of a tumor not spread? In the beginning I had 3 small tumors, all less than 1 cm, but I guess since there was so much fibrocystic stuff in my breast, they just couldn't see it was one big tumor. So my fear is how could I possibly have this big of a tumor and it hasn't gotten to another part of my body. And how many BC patients (especially TN) actually survive with that big of a tumor. All questions I will ask my MO but I know there just won't be any real answers. Sorry for the rant, tough morning, at home alone, hubby at work, and mind is wondering. I plan to get busy and have a productive day since I have two days before back to work (which will be crazy busy....) So I guess I really was wondering if you all interviewed other MOs or did you go with your BS referral? I'm at Hopkins, so I think they have got to be good and I'm hesitant to have doctors at a bunch of different places. My other option would be to try Georgetown, but it feels like a daunting task to try and set that up. OK, promise my future posts will NOT be this long. Thanks for your support.
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I felt comfortable with my doctor, his answers to my questions (he got down to the level of detail I needed) and his treatment plan (why he recommended chemo first) so I did not interview MO's. I have however, had some issues with his bedside manners. Medically he's great personally he can be a dick but interestinly he's gotten better since I'm not going in there monthly with some hypochondriac issue
. In regards to your question/comment about having a large tumor that hasn't spread. I am learning that cancer does whatever the hell it wants with very little rhyme or reason. It all seems like a mystery.
Get out of your head and stay busy...going back to work with help. BUT don't overdue it
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SweetMaggie,
I didn't interview anyone....but I'm a chicken about those things. I go to a cancer center so everyone is all in the same place. I went online and researched all the doctors there, then read patient reviews. Each time I was supposed to get a new doctors ps, onc, etc, I requested the one I had chosen online.
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stupidbood.....I am dancing for joy for your news!!! awesome
get mri results tomorrow....let's hope no biopsy is needed!
Maggie
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So happy for you StupidBoob!!Mags- still hoping that it is nothing- will be thinking about you tomorrow!
Happy Monday ladies!!
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Hooray Stupidboob! So happy for you!
Maggie, hope your results are good as well. I'm having my MRI and repeat tests on Wednesday. Prayers and positive wishes for both of us.
Sweetmaggie, I'm spread out over many health systems. Doctors change positions and hospitals pretty often now so I don't think it's that unusual to follow your doctor to a new place. You need to keep good records of your visits and medications so that new doctors or systems can be updated. I sign releases so they can share information also.
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I am 6 weeks post lumpectomy and done my first cycle of AC. I had my rad consult and asked about BMX. Clinically, it isn't indicated. She did say that if I want to do the BMX to wait until after the rads. She says I may feel differently in a year. I want these suckers gone! LOL
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sweetmaggie - my tumour was 4.7cm. All my scans are clean and the one node that is "positive" had less than 200 cancer cells in it. Clinically it is negative. Only positive on immunostain. I have no idea why some spread more than others. Confuses me too.
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Sweetmaggie, my tumor was 3.5 cm and my nodes were clear also. I completed treatment last August and still have the what if's. Who knows why yours didn't spread but be thankful it didn't. I never asked my Oncologist or surgeon why my nodes were clear. I never though of that until recently. I'll be interested to hear what your doctor tells you. Keep us posted.
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I'll let you all know what my doc says. Funny, I'm not quite sure which doctor I'm supposed to direct questions to (breast surgeon or medical oncologist.) I sent my nurse navigator an email yesterday asking the question and will see what she says. I really like my breast surgeon, but he is quick, to the point, and lets move on (but I trust him still!) There are a few things on my pathology report that I want to know about too. First, my diagnosis is "IDC with prominent lymphoid reaction". I don't know what the lymphoid reaction is, but what I've read, I think is means there is a lot of white blood cells, which may have something to do with why it didn't spread. One of my biopsies actually was suspicious for medullary (and indicated the high level lymphocytic notion as well.) I've read there is research being done in this area. The other question will be the statement on my path report that says "vascular invasion is not definitively identified". My understanding is that the cancer can spread through the bloodstream and not necessarily through the lymph nodes, and that this part of the pathology report could be an indicator (although I think there's a lot of controversy on this too.) But I thought it should say, yes or no. So I'm like what the heck does "not definitely identified" mean? So if I find out anything interesting, I'll let you all know. I hope there's not a note in my medical chart like Elaine from Seinfeld that says "oh no, it's her again!) I just bought a new NutriBullet so I can drink lots of spinach and kale, oh joy. Hope everyone has a good day, the sun is shining here in Maryland!
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SweetMaggie - LOL, I love Seinfeld...still watch it! That's so us!
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I guess I went through treatment with blinders on...I did have copies of my reports because I had to forward them on for second opinions, however, I never really comtemplated on them! Since 2 out of 3 MO's, my RO and my BS all had the same dx for me and the same treatment recommendations, I just went with it!! One of these opinions was from MD Anderson and they are supposed to be one of the best! So I'm hoping that something was missed! At this point, I really do not want to go back and reread and try to understand, I just want to move forward! You can read my profile to see my dx and treatments!
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SweetMaggie - my vascular invasion was also deemed indeterminate. My BS explained it to me as the pathology wasn't clearly negative, but not clearly positive either, so it's considered indeterminate...although she felt most who are indeterminate are positive. It's for this reason my radiation oncologist has suggested I do radiation after BMX although I'm node negative. Hope you're able to discuss everything with your team and get some answers.
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I'm a little late but a big YEH to Stupidboob!!! That is awesome!
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My last chemo is coming up in a couple weeks and I've been racking my brain trying to come up with a little something to give my onc nurses along with a card and note of thanks. I found these angel wing keychains online and think they're perfect in terms of expressing how I feel about them. They have been guardian angels to me, always smiling and laughing, but never blowing off how hard this has been. They actually make chemo enjoyable. However, I'm unsure of their religious beliefs and do not want to offend them. Do you think something like this would be appropriate? I am planning on baking something that day as well, but wanted to do something a little special for the 3 nurses I've bonded with. I was thinking of giving this to my BS and onc, too. Again, though, I'm worried of the religious implications and offending them. So, what do you guys think? Here's a link to show you what I'm talking about.
http://www.etsy.com/listing/77268943/angel-wing-keychain-silver-antiqued
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allydp, that is perfect. My infusion center is decorated with all kinds of angels. There are display cases and shelves and I think the angels are gifts from patients. An angel is someone who is compassionate in this situation and it does not have a religious symbol on it, they have loved you and cared for you. It is from your heart and that is what matters. If it's special and meaningful to yiu it will be the same to them. And congratulations on finishing, such a milestone. You did it you warrior princess! You are beautiful inside and out. I see you still have a road ahead with surgery and rads but you did this hard part, you can overcome anything. Stay strong in your mind and heart and your body will follow. Celebrate and take a picture on your last day!
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Allydp Lisa said it all. Nurses are angels and I think your gift is just perfect. Same for the Doc's. If you didn't feel like baking, chocolates always go down a treat with Nurses. Congratulations on completing chemo. You have done it girl, its almost over. Have you got rads next, if so I found it a breeze so hopefully it will be for you.
Mags in your pocket and hoping all is well.
Cat in your pocket too. How are you going lately.
And Fighter also in your pocket.
Oh and Slowloris.
It's a good thing there is a lot of me to go around lol
Hi to BAK, Titan, Linda, Luah, Gillyone, Lovelyface, BAR and all the lovely ladies on this thread, Stupidboob, Jan and Kathy if you are around. Have a good day everyone.
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Lisa - thank you! I don't know why I didn't think of this, but my infusion center has a little window ledge full of angels as well. I'm sure they're also gifts from patients. I'm glad to hear you and others think the angel wing will be okay. I already had my heart set on it. And thank you for your kind words. I can't believe I'm almost done. Like you said, I truly feel if I can get through chemo, I can get through anything. This is what I keep telling myself to push my through the rest of the year.
Cocker - thank you so much. Yep, surgeries and rads are next. If everything goes as planned, I should be done with my 2nd reconstruction surgery (permanent implants) and hysterectomy (I carry the BRCA gene) shortly after the first of the year. I was dx in January and my BS said to me on that very first appointment, "This will be the absolute worst year of your life, but you'll get through it and be stronger for it." I pretty much live by that now and tell myself that 2014 is just not my year.
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Alicia, you got this! So happy to hear you are almost done with chemo. That is a huge milestone.
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Allydp, congrats with being almost done chemo! I love your idea of the angel wing and think it is very appropriate and is being given with love-that is all that matters! I want to suggest that maybe 2014 IS your year, it's the year you rid yourself of a negative and will emerge with an appreciation of life that only we ladies understand!
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Ally, those are beautiful gifts. I'm really into birds so to me a wing is a beautiful thing! ( I happen to like angels too.) Another possibility is a silver heart if you're worried about the angel wing.But I like what you picked out.
Congratulations on getting done the chemo milestone.
Why are women told to have the uterus removed with triple negative? I know the ovaries and tubes must come out because of the difficulty in catching ovarian cancer, but endometrial cancer is usually self contained if it happens and hormones don't contribute to cancer growth. I guess it is better safe than sorry later.
My gynocologist told me it was better to keep the uterus for some hormones, and I would hate to give up yet another organ that is used during sex. Okay, that is blunt but I do enjoy the earthquakes! (orgasm contractions)
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thanks all for the well wishes and hugs....externally I am solid as a rock and internally I am mush! biopsy is Monday with results the following Monday....I want my mommy
Mags
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