Calling all TNs
Comments
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hhfheidi: Thank you for sharing such a wonderful moment!
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MBJ: My mother in law flew in from Brazil to help me till January. She is a very big help.
Lynn18: Good luck on your MX. What time is your Surgery?
Everyone : Thanks for the words of encouragement.
Have a great weekend .
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Heidi - your day yesterday was so uplifting!
Monika - that's wonderful that you've got some help until January. I'm sure she's glad to be there for you, too!
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Sugar: OMG!!!! Your hair is straight!!! Did you use the Marc Anthony Straight??? Sooooo Cute!!
MonikaV: So glad you are going to have someone by your side to help you through this. I only had one side done but it was still difficult to get in and out of bed. Do you have an angled pillow for stting up during recovery? This really helped me so much and made it easier to get in and out of bed without help. Hugs!
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MonikaV: My surgery is 8:30 am. What time is yours? Good luck to you also, I am glad you have someone to help you afterwards.
LJ: How are you? I hope you are still feeling well.
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MBJ - today I used the luster cream from Sally's. I let it air dry as usual but then blow dried just the very front bangs when it was almost dry. I tried blowdrying the whole head last week and it was a disaster...poofy and kind of frizzy. I'm getting it cut next Saturday so perhaps some of the curl or frizzy ends will get cut off.
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Hi everyone! I'm finally introducing myself.
My story is a bit unusual. I felt a mass under my armpit last April. Was sent for a mammogram but nothing could be seen. (I have extremely dense breasts even after menopause.) Doc then looked at my nodes with ultrasound & said it looked like 2 swollen lymph nodes from infection. Was given antibiotics but no change in nodes.
In May, a biopsy revealed cancer in nodes, probably of breast origin. One of the ultrasound docs said, "But it CAN'T be breast cancer. There's no tumor. It might be a lymphoma, or coming from the liver or elsewhere." Also had an MRI and again, nothing could be found in my breast. So the challenge was to find out where the cancer was coming from.
I then went to my home state for my summer vacation and decided to have treatment there. (The town where I live/work has only 2 oncologists and I was stumping everyone at the Imaging Center.)
I had a PETSCAN near the end of May, which turned out clean except for those 2-3 very active lymph nodes. Then, I saw a breast surgeon, radiology oncologist, and medical oncologist. They decided my treatment.
My Mx was 6/28/10. After combing through the breast tissue, the pathologist(s) found the primary tumor. It was 0.4 cent. Mystery solved. The surgeon also performed a complete axillary dissection and had thought she'd find 4 positive nodes; however, out of 24 nodes, 8 were positive. Funny that these did not show up on the PET. Either they were too small or it was just spreading too quickly.
Because of 8 nodes, my stage was changed from II to IIIa. My pathology report also revealed basal-like TNBC, lymphovascular invasion (no surprise), and extracapsulary extension-3mm.
I recovered from my Mx pretty well and started my Tx 7/23/10: 4 DD AC, 12 Taxol ( 6 more to go and 33 rads).
My learning curve has gone up tremendously since reading the discussion boards. I now question whether I should have had neoadjuvant chemotherapy to check for sensitivity. I have no idea if the chemo is working. I asked my onc. about this, but she said that after she had discussed my situation with the breast surgeon, the surgeon said that there was no evidence which proved neoadjuvant chemo would lead to a better prognosis. Even though I didn't have a tumor they could find, I think they could have seen whether the nodes were affected and perhaps changed my chemo regimen if needed.
I'm also wondering if I should consult a TNBC specialist. I'm planning to be in the Bay Area for 2 weeks over Christmas break. I've asked my onc. if I could get Carboplatin along with the Taxol, but she doesn't seem to be keen on it for various reasons. However, I've read that other gals with lower stages have had it.
Have a feeling that my anxiety is going to go through the roof once the chemo ends. Other than side effects from Taxol, mild in comparison to the AC, I'm feeling pretty good.
Thank you for reading my wordy story. I have enjoyed reading & pondering over your posts over the last 2 months. I welcome any advice you could give me!
With warm aloha,
Laurel
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Hi Laurel, Welcome . 0
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Hi Laura: Welcome! I had adjuvent chemo and from the few things I read on it a year ago, they have great success with it and many times it is chosen to make the surgeries even possible. The only other thing I could suggest for prevention is nutritional which you can find on the alternative threads under nature girls. There are many sutdies being done on different foods that have natural antigiogenisis type factors which are helpful in preventing any remaining cancer cells to find a new blood source. It's pointless to second guess your treatment because it can just lead to anxiety which is not a good thing. Also, check out breastcancerchoices.org for other suggestions.
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Titan - I was tested for the BRCA gene and I am BRCA 1 positive. I was tested because my cousin passed away last year at the age of 36 of breast cancer. The gene mutation is passed from my Father's side of the family through my great grandmother. So the relation is not close but many many cousins and aunts have passed away to breast & ovarian cancer which is due to this gene mutation. My sister was tested over the summer do to my dx and she also tested positive for the gene. The statistics for testing positve I do not know exactly but I do know that it is very low and chances are you are not positive. I would do the testing if I were you but that is just my opinion. I have a daughter, 2 sisters and nieces that I did it for. I feel that knowledge is power.
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Thanks Tiffany..I will discuss the BRAC testing with my onc next month when I see him... I too think that it will be negative but with this crap you never know!.
Welcome Laurel! I'm glad you joined us.. MJB was spot on with her post to you...She is our energy on this board!
Ran the 5K today..it was a great morning to run..a little cool...I came in 56th out of 63 overall..oh well..as least I wasn't last..A friend of mine on other thread has as her motto.."slow and steady wins the race"..I think about that alot..I got the first two right!
Sugar..my hair is straightening out again..at least somewhat...I think it is the lower humidity...Do you use a flat iron? It seems to work well for me..I can straighten out what I want..and leave the rest curly...
Good luck on your surgeries Lynn and Monica! Will be thinking of you!
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Good Evening Everyone,
I have loved getting caught up. . . .I went back to my classroom full time this past week 3 weeks after my Bilateral MX..Whew was I tired by Friday. I am not used to being tired but I am getting used to my "new" normal. It felt so great seeing all the kids and everyone at work. High school kids are quite entertaining.
I will see my Onc. for the first time on Nov. 15. Not sure what he will say but I am ready for the fight. I too have been tested for the BRCA mutation. Still waiting for the results. I am planning on a hysterectomy if I am positive. Not gunna use it so why keep it. LOL
There was so much to catch up on on this board. LJ I am so glad you are doing well. Good luck to all that are having surgery soon. It really isn't that bad...The emotional crap is harder than the actual surgery.
Take care and will catch up next weekend...
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Laurel: Hate to see you here, given the reason, but this board is wonderful and so are the people on it! I too am Triple Negative, and my tumor is also apparently small. My situation is a bit different... they call mine an incidental finding.. based on no lump, no mass, only 4 microcals on a mammo. My IDC was taken out at biopsy... all of it... and the size is unknown. The only thing found at final path was DCIS < 1 cm. My onc has recommended 4 rounds of TC (either carboplatin or cytoxan, my choice) every 3 weeks. I'm getting a second opinion next Wednesday with an onc that only does breast cancer and have been told very educated about TNBC. I highly recommend a second opinion... if for nothing else than peace of mind. Let us know what happens... I'm very curious what you end up getting. My onc said she didn't feel I needed DD or adriamycin...0
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Titan- I had a friend who used to say, "If you can't be first, be last. There is distinction in both". Remeber that the next time you jog!
lululani- I can understand your concern on the neoadjuvant chemo subject but FWIW both my BS and medical onc prefer getting the tumor out *first*. So, try not to get too hung up on it. I, for one, would not have wanted to risk possible further spread while they figured out what it was (or if it was even there). By "cutting to the chase" so to speak, the cat was out of the bag; they found a .4 cm tumor (neo is often done to shrink a tumor to operable i.e. lumpectomy size) and it is OUT. Also, when neo is done there is often no way of telling how many nodes may have been infected (other than the ones you knew about pre-surgery) since the idea is that the chemo eradicated it.
Others may chime in with additional thoughts/opinions but, IMO, there really isn't a right or wrong choice here. It's more a function of your physician's preferences in many cases. Concentrate on the road ahead; you didn't take a wrong turn, you just took a different direction.
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Thinking about you, Laurajane, and hoping you're getting the rest you need for a speedy recovery!
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Titan: Be happy that you are well enough to run that far and still alive to tell the tale, I say LOL! I am thinking of asking my dr to run a bunch of blood tests on me to see what I am low in cause I just don't have any get up and go! Congratulations on your run--No losers in that race!
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Lynn - surgery was a LOT easier than chemo for me. After I'm done with my cancer journey, I'll have had a BMX, chemo and rads. I am BRCA1+, so is my sister. She was dx at 44 years old. My 1st dx was over a year ago at 39 and then again 10 months later. Even though I got BC after my BMX, I'm still glad I had the surgery. Oh, I forgot... I'm getting a hysterectomy/oopherectomy after rads.
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Hi girls, Just been reading all the posts, I hope everyone is hanging in there. I am one year past diagnosis and doing well. I too am TN.
October being breast cancer awareness month is again making me crazy. I know it is a good thing but I can't stand the constant reminder!!
Some web site about TN pooped up last week and made it seem so bleak. Freaked me out. So last week when I saw my surgeon for follow up I asked her how much I need to worry. She made me feel better and thought I would share her words.
" We have followed the procedures suggested by our cancer doctors, our bodies have handled them well....we should feel that we are on the right road to recovery and although we will be watched over the next few years, we should be confident that the cancer is gone."
I hope these word help others who have that nervous feeling.
take care, Jean
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Hello Lululani
Our diagnosis are so similar - thank you so much for sharing your story here. Until now I have never met someone with occult - let alone triple negative and nodal involvement! I will tell you my long story so thanks all for patience reading!
I was diagnosed last October (a year ago this week). My doc was doing a heart scan due to a bad blood result he said fortold heart disease - (and also cancer I later found out). The scan showed my heart was perfect - but it showed a lump under my right armpit .I don't have the exact size on hand - but I think it was smething like 3 x 5 cm ish....so was pretty big but very deep. But once he showed me and felt it was very palpable - like a cementine. The thing is, I had a clear mammo and us 6 months earlier - was told as many were here that I had dense breasts.
My doc too thought was lymphoma at first blush - especially since my cts had other enlarged nodes - in axilla but also supraclavicle, around liver and small intestine. He did biopsy and came back "adenocarcinoma likely of breast origin"...so, they then thought breast cancer. It was me who was in denial - not my docs. They seemed so sure due to the pathology. They wanted to do mastectomy - but I said - you show me a lump in my breast and then you can cut it off - until then - keep on looking - on came more cts, mri ,mamo and ultra sound...and more needle biopsies that showed "suspicious cells" only but no lump. So like you I was given the "occult" diagnosis.
So they went to tumour board and came back with the idea of doing an axillary dissection only to get more detail on the mass. I agreed, because I was still reluctant to do mastectomy, thinking they still had my diagnosis wrong. After removing 29 nodes - 9 were positive and pathology showed still consistent with breast primary. My doc ruled out lymphoma - saying lymphoma pathology looks very different than breast pathology. Staged at 3C because of the # of nodes and supraclavicle nodes too. I was becoming more convinced but still not sure. Docs said we can wait for mast but start chemo because of so much nodal involvement.
Then started chemo in Jan - similar to your chemo. Was supposed to be 3 rounds of FEC 3 rounds of Taxotere - all given every 3 weeks. I'm in Canada and carpoplatin is not protocol. I started the FEC - got through 2 rounds before I ended up in the hospital with severe diarrhea , dehydration and neutropenia. I have trouble with staying hydrated because I have no colon - was removed 10 years ago after many years with ulcerative colitis. I have internal pouch fashioned out of my small intestine to replace my colon - and it just couldn't take the FEC. The onc then decided that I couldn't handle the "F" so took it out of my third round. Then she recommended 12 weekly taxol instead of taxotere - saying the taxotere would be too hard on my gut and with weekly taxol she could monitor symptoms and adjust if necessary. I fought that one too...but lost. I wasn't looking forward to weekly chemo. I finished in June - it was rough mostly because I only had one day week that I started to feel better before they hit me again..but she was right - it was easier on my gut and I didn't end up in the hospital. The biggest SE was neuropathy which got quite bad about halfway though - couldn't even stand up on my feet for a few days - but she lowered my dose and did improve slightly - and now 4 months later have mild in my feet only. So she was right....
I then came to the boards here for advice...because I needed to decide if I was going to do mastectomy or not..(or maybe both) because I was finally coming around to accepting that this was of breast origin and not something else. Oh...I also had brca testing done because was eligible due to my age (41 at diagnosis) and TN status...was negative. So although that was good news, I was actually hoping for positive because I could then be more sure was breast. But was negative, so back to the drawing board. My surgeon wanted to remove one or both....PS the same...but onc and rads onc were no so sure. They said that athough recurrence risk was high...mestasis was more likely in the future than local recurrence due to nodal involvement - and breast removal wouldn't change that risk. The ladies here were all so helpful....and I finallly came around to decide on uni mastectomy with diep reconstruction. That was scheduled for August, with 25 rads to follow.
But there was a twist in that plan too...post chemo scans showed enlarged nodes on my "good" side in my neck - they had been there before chemo too...but the stayed stable during chemo and didn't shrink like others did - so they were now saying I was likely stage 4 because that meant cancer had metastasized away from the original site (which they were assuming was right due to the axilla). So....we booked neck node biopsy and for 6 long weeks I got ready to die! Crazy I know...but that's how I felt at the time after being told stage 4. In that time all docs agreed that the planned mast should be cancelled....because if spread no value in putting myself through the mast and reconstruction surgery. But they did recommend rads still...so that was planned to start in Sept.
But lo and behold - neck nodes came back negative! So...restaged at 3c...although they said was very possible was 4 but chemo got it...so they said do rads now don't wait...then make decision about mastectomy later. So I just finished 25 rads this week - yes, burning, peeling,open skin and fatigue but still much better than chemo! I'm done - yay!
Whew...that's my past year in a nutshell. So next steps for me is rescanning CTs and Bone Scan over the next couple of weeks to see if there's anything rearing its ugly head....then I need to make a decision (again) about mast/reconstruction once my rad burns heal.
I can relate to your questioning about about neoadjuvant - I still wonder if I should have had mastectomy at the beginning - like you - and would they have found it. Are you happy that they did? I can tell you as I'm sure you've read that the good thing for us TN gals is that chemo seems to work well for us....and the docs believe my neck nodes (and others) did respond to my regimen - which is very similar to yours. Will you be able to have another PET? Will that give you some comfort if clear? We don't have TNBC specialists here...but my treatment was with one of Canada's best cancer hospitals - Princess Margaret. So while I was very active and challenged my docs during my treatment - in the end they have always ended up being right I think...so I have learned to trust them more. If you trust your docs....it helps.
Please stay in touch on this great site so we can follow you...and selfishly for me because I need an occult buddy! I don't post often but read almost every day....good luck with the rest of your treatment....
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MBJ and Lynne - thanks for sharing your experiences. The tumor and lymph nodes aren't getting BIGGER, they just don't seem to be much smaller, although I know it is hard for me to be objective. I'm going to ask for an US at my next appointment, and really challenge my doctor about the reasons for neo-adjuvant - i.e. if it isn't working, time to switch up.
I hope the AC is at least halting the progression of my cancer. I'll be doing 4x Taxol after the AC, although I may try and have her spread that out over 12 doses based on what I've read. I'm also going to talk with her about adding in Carboplatin as I know it is showing great promise for triple negative cancers.
Laurel - Neo-adjuvant was the recommendation of two oncologists (my current one and Mass General), but studies have shown it does not make a difference in terms of outcome.
I'm finally getting my energy back after my last round - been trying to beef up on Iron rich foods - but the emotional toll is still strong. I'll never know how many nodes I have positive, and I guess in some ways ignorance is bliss, right?
LauraJane - I read your story, and hope you are doing well and being gentle with yourself!
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Welcome Lululani and aloha to you, too!
Pamdo - nice to see you back on this thread. Looks like you and I are both approaching the one year anniversary of our diagnosis this week.
I hope everyone is having a nice relaxing Sunday.
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I've mostly been posting on the July Chemo board. I just checked in here today and, boy, am I glad. I so relate to those of you who wrote about the down feelings after chemo. I've been on DD AC/4 and Taxol/4. This Thurs. is my last Taxol treatment. I'll be done with chemo, then radiation, then a new year finished with treatment. As my last chemo approaches in a few days, I've definitely had people saying how wonderful, and now that you're done, let's get together, and you must be so happy, let's celebrate.
I'm not. I mean, yes, I'm glad I won't have any more infusions, but I've been really depressed these last few days. Just the realization that I'll be done with chemo, but stuck with a bald head and low energy. Especially the lack of hair. It's not going to grow overnight to the shoulder length I was comfortable with before. I'll still look like the cancer poster child, unless I wear a wig, which I'm so uncomfortable with for long periods.Waiting for hair to grow feels like Waiting for Godot.
Then there's just the feeling of having lived through something traumatic. Oh, I'm such a "trooper," and I suppose I am, but the truth is, I don't know how long it takes to leave the Twilight Zone that is cancer to normal life again; how long to feel like a part of everyday life...
Thank you all for your words. They really helped me not feel so alone.
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Eileen: Hi there! Sorry to hear you are down. My chemo blues come and go but waiting for godot LOL--that pretty much sums up watching our hair grow, doesn't it. Even though I have 7 months of hair growth, I still long to have "myself" back, and the truth is, cancer kicked my but and I am exhausted from it all. I love that we now have a beautiful picture of Sugar encouraging us on our hair growing path. We are neighbors--where did you go for treatment?
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Love the twilight zone - roflmao
I can relate to that!
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MBJ, I live in the West Valley so I treat in West Hills, although I had my surgery at Providence Tarzana. My onc is Stanley Rossman and he's a fabulous human being. Really cares about his patients.
Re the exhaustion, my onc tells me that for every month you treat, also including surgery and radiation, it's takes that many months to feel yourself again. It's gradual until one day you realize that you have you back. I'm so glad he said that because otherwise, I'd probably drive myself crazy wondering why it was taking so long. When I get my last chemo on Thurs., I'm going to ask them to add a huge dose of Patience, 1000 mg., to the chemo bag.
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Eileen, I so identify with what you are saying. People think I'm "such a trooper" also and that I have done "so well", but they are not around when I sit and cry. I finished chemo two weeks ago, but going out to dinner tonight I struggled to make my wig look nice and natural, while wiping dripping blood from my still bloody nose, and I just felt a little angry and sad. After I finished the chemo I was on a high for a week and ran around with boundless energy, then I crashed like a smashed pumpkin. Splat.
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I've been missing all of you wonderful ladies. Great catching up on your posts. Thanks for all of the well wishes, prayers and everything else sent my way. I'll take it all with open arms being that I believe that it has all been sent with good intentions. Thank-you. Thank-you. Thank-you.
HHFHeidi- I cried tears of happiness reading your post.
Lynn and Monika- I'm sending positive thoughts your way and hoping your surgery goes as smoothly as mine has.
I have been feeling really good. I had one drain removed last Thursday. I developed a seroma starting yesterday and it hurts like heck. I'm hoping to go in tomorrow and see what they can do. The shock of discovering after surgery that I had 14 out of 20(I thought it was 13) lymph positive and a bigger tumor than when I was diagnosed in May through me for a loop. Especially after all of the chemo AC and Taxol. I'm still having the SE from the Taxol, I went through. I have been working like crazy. Odd that my phone is ringing of the hook for landscape design work and "I'm saying bring it on". I completed 4 designs this week and met with 2 more clients today. No one has questioned me for wearing long sleeves and a glove on my left hand.I am staying as busy as I can almost like I'm on speed. I crash daily and take at least a 2 hour nap. I feel like there isn't enough time to get everything acomplished that I dream of. I am having my basement refinished which is something I have promised my son for the last 3 years so he can have a bedroom down there. I do have two long time friends (Since I was 14) that have reentered my life which has been wonderful. We hadn't really talked in about 3 years because we were all so busy. They both shaved there heads and it has been so much fun having them in my life again, true friends never really go away. Not much time to procrastinate now. I'm smoking again which is crazy I know. I asked my surgeon if I quit smoking entirely would I live longer and he said "If you enjoy it do what ever you want to now to enjoy life to it's fullest" remember he only gave me about 3-4 months if I have surgery. That is my prognosis with everyone as far up as the BCspecialist up in Indy. I am going to proove them wrong. How can I feel this good right now and be dead in such a short time. I don't think so. So I have been trying to do just that. Somethings in life don't seem fair but the game plan for me is in debate. My current onc wants me to have radiation then more chemo although she won't be able to see me for 3 weeks. LOL. I wish everyones life was as important as mine. Ha! Ha! My personal doc (Sweet Bill) has been on top of it. He has me scheduled for a petscan this Tuesday. I guess in my sweet dreams I am hoping that my cancer has not spread throughout as aggressivly as predicted by all of these people. I'll find out this week. His hopes are to get me in on one of these clinical trials up in Indy for Carbo or cisplatinin combined with another drug and parpinhibitors. I'm hoping I meet their doggone criteria. He tried to get me in on that same clinical trial last May. It's such political BS. Why isn't it available to all of us that want it. If I can't get in to one of these my Onc can put me on straight carbo platinin but the prognosis isn't that great for me if that's the case. In general life is great. I am loving it more than I ever dreamed I could. I can't believe I ever wasted tears on my loss of hair, nails and or breast. I'm going to beat this! Love to all of you.
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Eileen..your hair will be showing up quickly..now that you are almost done you can start taking biotin..I also used aloe vera on my head..read that on here somewhere..thought why not? I went topless 3 months after my last chemo...My hair was 1/4" long. had it "trimmed'' colored caramel color, tipped with blond..I was SASSY! I loved it! Have had 3 haircuts since then...I really, really liked it short but too chicken to get it quite that short again...
It is amazing how many women keep their hair short after treatments...It can look very professional and is very easy to take care of...and it is SEXY..! My DH loves it.
Oh and yeah..it is freaky when your last chemo is done!..You think..ok..did I have enough..will it "Take"....and everyone wants to take you out and party because you are done..My girlfriends wanted to take me out that very night! I said..give me a couple of weeks here! It does take awhile to get back to YOU....Remember that emotionally you are still very fragile..but it gets better!
Welcome to our new Ladies and thanks Jean for the positive post!
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Laurajane - so glad to hear from you. Your post was so uplifting!
Titan - I'm planning to keep my hair short as well. In fact, I'm going to a long overdue cut next Saturday.
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Eileen - you are doing everything almost exactly one year after me. I had the same chemo, finished the end of October 2009 and then rads which I finished on December 31!!! It took me until March to go topless. My hair was pretty slow to get going, but I had a lot of fun with my short curly "sassy" hair. Had it colored really bright! Now I still have really short hair - but it looks like I did it on purpose than than that's all I've got. You will feel better - just give it some time. You have been through a lot.
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