Podcast: Hope After a Triple-Negative Diagnosis
Comments
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cjw75 glad you got your drains out..............just watch for seromas..........it is where all that area will start filling with fluid. NOT trying to scare you but just so you will not be freaked if it happens. I had to go have mine drain like 5-7 times I forget the exact amount of time. That is one of the reasons they don't like to take the drains out until they feel really comfortable that they have been in long enough. I felt like I had a bag of socks under my arm and wrapped all around me. I did have 15 lymph nodes removed so that could have play a role in mine doing that.
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cjw - I second what stupidboob said about the seromas. I also had to have fluid drained from my right breast which was also the side of my lymph node dissection. I had 22 nodes removed and that may have caused the fluid to build up. On second thought, I did have some fluid drained from the left breast but it wasn't nearly as much as the right one.
It wasn't painful to have the fluid drained so don't panic. It was more of a pain in the ass to have ONE MORE THING to deal with from this f*cking disease.
Almost one year since the mammogram that changed my life - and what a year its been!
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I don't think I have any fluid build as of yet. I had promised to stay in the compression bra until the next time I see him (next Wed). What I am not liking right now is the feeling of the expanders and cutting my hair so short (preparing for chemo next thursday) that I feel like a boy.
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cjw - I've often thought that BC robs us of those things that make us feel feminine - I know exactly how you feel. Take it day by day...
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Anamerty,
I got triple negtive and I just started the chemo a week ago. I have been trying to find out if I can avoid the chemo. And I see you didn't have chemo the first time in 1999. The second time is not a recurrence fromt the first time. My doctor told me I would have 26% 10 year reccure rate without chemo. My second question is why we get BC? I think I has too much stress and because I suffered from depress so my ability to handle stress is lower. To avoid get this again I am trying yo find if reduce stress would be helpful. I wonder did you had much stress? and did you try to change your life style after the first one?
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Hi Anamerty,
What type of surgery have you had? Lumpectomy or Mastectomy?
The past 2 years were extremely stressful for me, prior to BC diagnosis. When I was diagnosed with TNBC, I felt it was something that my was at the forefront of my daily life within the past 2 years. So I certainly feel stress was a contributor. If our systems are tired and stressed, we may not have the ability to fight off the micro-organisms that influence breast cancer.
To alleviate stress, I started exercising daily and introduced a very healthy diet into the daily routine.
I was also extremely deficient on Vitamin D, so I added that as a supplement now.
- Exercise, stress, Vitamin D deficiency
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Hi, All! Onco appt today and all is good!!! I AM DANCING WITH NED!!! Thanks to so many of you, I asked a ton of questions. I feel good about what I am doing and how to watch for this crap trying to sneak back into my life. I am not perfect about my diet, alcohol intake, or exercise. I try and that's all I will ever do.
To those of you new to TEs and implants, I felt ugly for a long time. No hair and no boobs. Tired, bad color, and no sparkle. It all comes back! My hair still doesn't know what color it wants to be, so I colored it in August. It looks healthier. Little by little, things are looking up. I am single, and have a wonderful male friend who reminds me I am still a woman! He rarely saw me when I was going thru all this, but for about 8 months or do we have become closer. I think that may be why I feel more feminine these days! One day at a time. It does come back!
Steph (5Owens) I hope all is well with you. I haven't seen anything for awhile. Please know I'm praying for you and your family.0 -
I am 2 weeks post LAST chemotherapy . . and wondering what the consensus is on HAIR REGROWTH? HOW LONG DID IT TAKE YOURS TO GROW BACK IN ENOUGH TO NOT WEAR THE WIG?
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Hi Debra,
Thank you for the info. I think you are talking to me. I had lumpectomy and Dx is IDC, 1cm, Stage Ib, Grade 3, 0/2 nodes, ER-/PR-, HER2-. I had been struggle with lumpectomy or mastectomy. I had scheduled for mastectomy but end up with lumpectomy because of the fear. Now I have to face the rad and I am very scared of that too because it also can cause problem. I was always extremely deficient on Vitamin D and thanks for the info. I will add Vitamin D to me suplement too. If stress is an importance contributor to this, we would have more control of our future. I will learn to handle stress and I started meditation everyday and make myself relax by religion believe.
Sherry
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Hi Fern! My last chemo was mid-Feb and I started taking my hat off around the end of April. I was still wearing it at times throughout May. I was cold!! I was 49 at diagnosis, so age may be a factor. I hope yours comes back fast!
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For those of you who say you're with NED, how do you know you are?
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Lisa I saw my onco Wednesday, had lab work and a physical exam. My labs are all normal including the tumor markers. My chest x-ray in June was clear, too. They ask all kinds of questions to determine if the cancer has spread to the brain(headaches), lungs(cough, chest pain), or bone(onset of pain without injury). I feel great and like the looks of my tests. So there is NED!
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to:sherry and inspired by:sorry i havent been on this forum again til now but will try to answer all your questions.i had left sided Idc 9mm cleaf nodes in jsn 1999 i had lumpectomy and radiation i did not need chemo as the cancer was undef a cm and lymph nodes were clear this cancer was also hormone positive they dicn't do her2 then i also have the brca1 and 3 of us sisters had breast cancer.this time almost 14 yrs later ii got a right sided idc 1.8 cm triple negative 7 sentinal nodes taken and they were all negative i had z double mastectomy this time and the reason for chemo is because it is triple negative grade 3 they would not do rads anyway because i had it back in 1999 this time my path says i have a poor prognosis due to high grade and triple negative status mo said i have a 40% chance of recurrence but chemo would lower that to 20% i dont like those odds but thats all i have
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Mine is triple negative. Although the invasive tumor was only 1.8cm, there was 14cm DCIS on the base of the tumor. The DCIS could not be seen or felt on Mammogram or ultra sound.
Learned from my experience
1. DCIS may not be detected by mammogram unless it forms a lump. In my case the invasive part had a lump. It's the lumpectomy that found DCIS. I am so glad I had mastectomy because my DCIS is multiple centered. There were also small DCIS elsewhere in the breast.
2. Mammogram may not work for young women, no matter how soft the breasts are. I breastfed all my 3 children and mine was hanging D cup. I was surprised when doctor called mine "dense breast tissue" on the mammogram and blamed that for inaccurate detection
I am going for hemo next Thursday. Oncologist offered 2 regimes. FEC-D on a 3 week cycle OR ACT-DD biweekly. Does anyone know the pros and cons on these 2 options? Is it too extreme to go ACT-DD since I am stage 1 with no lymph node involved? Oncologist rushed the apointment and didn't have chance to ask. Thanks for any input in advance0 -
Young Mom Toronto: I had Stage 1, Grade 3, TN . . . surgery was 5/7 -- just finished a 4 round Taxotere/Cytoxin regimen on 10/2.
My sentinel node showed micrometastatic .8mm AFTER surgery - during surgery, the sentinel node showed NO CANCER, so the surgeon went no further. After the pathology report showed the reality, the "tumor board" met and declared I did not need additional nodes removed, nor radiation.
I was "maybe" an "A" cup, total weight of both breasts removed was 1.6 pounds . . . they called my tissue dense, and fibrocystic. I breast fed two children for 1 year each. There wasn't much breast tissue left, in my opinion.
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YoungMomToronto: Where are you undergoing treatment? I was at Sunnybrook. Candidly, I think it would be worth discussing the pros and cons of various chemo regimes. FEC-D is equivalent to AC-T, though the E is known to be easier on the heart than the A. It is probably the most common regime given outside the US for invasive BC. AC-T can be given on a dose dense basis and there is some thinking that that may be advantageous for fast-growing tumours like triple negative, though I don't think any trials have put triweekly FEC-D up against AC-T; my onc called it a wash). Also Taxol can be done weekly, in a smaller dose, which most women find more manageable, though it takes longer to get through.
I notice you are Grade 1 - is that right? because TNs are usually at least a grade 2 and more often a grade 3. If 1, it would seem your tumour is slower growing which is good, but may also not require the heavy guns of FEC or AC. In fact with smaller tumours and no nodes, some women on these boards have done very well with TC. Perhaps your young age (?) and DCIS alters the picture, but I think it would be worth exploring all these options with your onc. Don't let them make you feel rushed. You need to feel confident with your choices, and the only way to do that is to have adequate information. Feel free to PM me. All the best!
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Hi, who decided when to drain your seroma? Mine is 5cm per PET scan but I have started chemo A/C and no mention of draining it.
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I have TNBC, caught in routine mammo last June. Going to CTCA for neoadjuvant chemo. Went w/carboplatin for first four chemos, shrank tumor to half its height, but I mentioned to onco that it made me dizzy for abt 24 hrs and he said that was a bad side effect and switched me to Adriemycin, which I'd feared. So happy that this Wed is my last chemo, but am seeking advice on how to proceed w/surgery. At first I thought "just take both of them off!" With chemo shrinking the tumor, its tempting to consider lumpectomy, but I don't think I can trust TNBC not to recur. Had biopsy on same breast 1985-benign calcium deposits. I'm 56 and am not considering reconstruction. It seems like I've known too many women who had lumpectomy, then mastectomy later. I don't want to go through this again! Thanks for any advice
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Cheryl: Please consult with your oncologist and breast surgeon (and/or get additional opinions if you're not sure). It is important to be well-informed on the risks and your particular situation.
I can tell you that experts that work with TN do not consider hormone status to be a deciding factor in the mastectomy-lumpectomy debate. http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=100&abstractID=60743 The fact is that TN, when it recurs, is more likely than hormone positive cancers to return as distant mets, which is why it's usually hit hard, systemically, with chemo. There may be other medical reasons to consider Mx - such as size of tumour, inability to do radiation, BRCA positive result etc.-- but not hormone status per se.
and then there is this study: http://jco.ascopubs.org/content/early/2011/06/29/JCO.2010.33.4714.abstract?elq=4fb8490e0ed5444ab6225f74da463b8f
Good luck with your decision.
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Luah, thanks so much for your input! I meet with oncologist Wed and surgeon Thurs, but want to have my questions ready. Appreciated the links you cited. The second one had another paper cited
http://m.jco.ascopubs.org/content/29/21/2841.full
Which has research showing that for triple negative, lumpectomy with radiation has 2.5x reduced chance of locoregional reoccurrence. Dr said in earlier visit that the radiation could be a one time blast during surgery. Hmm, this info really helps! (One off topic sentence-love your Neil Young quote--bought my Oct concert ticket to see him two wks before my diagnosis in June--I used this as my motivation to make it through chemo. The concert fell the wknd after my 6th chemo. I laid on the couch all day, then hubby dropped us off w/electric scooter. Made it through the whole concert. He's still got it!!)0 -
Cheryltulsa... good luck on your decision. There is a topic called flat rant that offers a lot of open discussion about no recon after bmx. I chose no recon because I am a wimp. I am still happy with my decision.
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Thanks, Fernmf. I'll check out flatrant!
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Cheryl - I agree with Luah. Initially, my BS said that I'd be a good candidate for a lumpectomy. When I came back BRCA1+, a lumpectomy was really no longer an option. Ultimately, the decision was mine to make and I followed the recommendations of my BS and MO. Both recommended BMX.
Be selective on the sites you visit - there are so many doom and gloom articles out there. Stay with sites like this one, TNBC, American Cancer Society, etc. You'll get up to date information - there is hope for us TNs.
Good luck with whatever you decide. Keep us posted.
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I will be having radiation (6 weeks daily) after BMX, which will follow pre-adjuvant chemotherapy. (I'm doing chemo now.) My breast surgeon said there is only a 1-2 percent risk of local recurrence with that approach. She said that's the way to reduce the risk the most. It does not reduce risk of distant recurrence from original tumor.
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Hi ladies:
Just stopping in for quick hello and to share this information with you:
You can track your food and exercise daily with: www.myfitnesspal.com
You can look up nutritional information with: http://nutritiondata.self.com
The nice thing about myfitnesspal.com is it will keep track of what you want it to, i.e.: fat,protein,carb,sodium, etc. You will have a drop down list to select items. When you do something more complicated like a smoothie with 6 ingredients, it will save your items, so the next time, you just have to click it, instead of trying to build it like the first time.
For the nutritional site, it's also nice because it gives you info like inflammation factor and glycemic index factor with each food item.
But the fitness pal helps with keeping a running tab on what you consume during the day. It is a little work the first week or so while you are first getting used to it and building up some specialty food items, but it has a very robust database. Even includes name brand foods, food like Trader Joe's brand, and even has restaurant brands and their items in the database.
Hope you all enjoy it and find this helpful.
Have a great day everyone - hugs to all my support Sisters out here!
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Hi Debra
Very much enjoyed the nutritional link. Recently ended chemo, had 4 a/c and 1 taxol, I was not able to finish taxol treatments due to my bone marrow being to sensitive because I had ovarian cancer 16 years ago and had some serious treatment back then. The nutritional aspect of our treatment is so important. I just need to get the energy to exercise more...I also saw your post on dr. Gupta and find it hopeful. We are getting closer....anyway, have a nice holiday...thanks for the postings..
Lisa0 -
As you'd said, the doctors all confirmed that there's no survival rate difference between lumpectomy and mastectomy in my nonBRCA case. I'm running a low grade fever and am on antibiotic. My MRI last week shows no sign of the tumor after the neoadjuvant chemo. If my body will get rid of the fever, I'm due for lumpectectomy with needle localization plus sentinel node biopsy. Three weeks after surgery I'll be slated for radiation either 6 wks, 5 d/week, or "the Canadian method" 3wks, 2x a day 5d/wk. I've figured I'd go back to work 6 wks after surgery but wonder if the radiation will slow down recuperation any
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So sorry to hear this, I too had a lung nodule, it was just removed about a week ago, lung surgery is no picnic. I have not started any chemo, I was diagnosed with Stage I in October, then they discovered on Pet scan it already spread to my lungs. So now I am Stage IV just like that. It was quite abit to swallow. I am still trying very hard to stay positive. This site helps so much, just knowing you are not alone and there is a way to go on with your life is very calming to me. I hope you have a positive outcome. Meet those grandchildren and love them with all you got!
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How are you doing? I just read your post, which is the closest thing to what I'm seeing on my pathology report. I have IDC with lymphovascular invasion identified - Stage III, and now I see on the report that I'm triple negative. I'm seeing my first doctor tomorrow. What should I be asking? What am I in for? I'm so scared. I'm so glad I found this site. I feel like I'm all alone in a sea of healthy people like I thought I was last week.
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Update: had my lumpectomy/sentinel node biopsy after Thanksgiving. The neoadjuvant chemo worked. No live cancer cells were found in the biopsies; only dead cancer cells. Am starting to feel human again since chemo is over. Christmas Eve I found that my eyelashes are coming back in (1/8"-ha!). As soon as insurance approves, I'll start radiation approx 6 wks worth. I'd originally told work I thought I'd be back to work Jan 14. I guess I'll stick to that and do radiation at the end of the day, then go home and rest.
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