Calling all TNs
Comments
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congrats Lisa on 2yrs!! That's awesome. Thanks for the ovary info from your doctor! Gives me a bit more piece of mind about leaving them in since it would be an additional surgery at a later date that I would press to not do. Are there ways to check for Ovarian cancer before it's too late?!?! I can use the heart protection after the AC chemo round if that's true :
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It's been a very long time since I've checked in here... but I could use some answers and support.
I was diagnosed with TNBC in Dec 2008. Had lumpectomy, did chemo. When we were about to start rads a mammo revealed DCIS in the same breast. I opted for a BMX with lat dorsi reconstruction, which caused me more pain than I could have ever imagined... Got hooked on pain meds. 3 years later found a lump in the same bad breast, it was a recurrence. Had the implant and the lump removed, did rads, and had the breast reconstructed again. My marriage started falling apart. I had PTSD from all the treatments and anxiety and depression. My husband left and I had a mental breakdown from all the cancer stress, from feeling like I failed my family, from my addiction to painkillers. I attempted suicide and ended up in the psych ward for two weeks. When I got out I got a great psychiatrist who diagnosed me with severe depression and got me back together again. Then I lost my job, and it was a very stressful year until I found another one. 8 months ago I met a wonderful new man and I've been so happy - job was good, in love, kids happy... And then last week I started coughing up blood. My oncologist couldn't see me for two weeks so I went to the ER, where they did a CAT scan and found a 3 cm mass in my left lung.
I'm seeing the NP at my oncology practice tomorrow. I'm assuming he'll order a PET. I guess the big question is - is it mets? How likely are mets with TNBC after 7 frigging years?
I haven't told a soul about this. I have a once in a lifetime Arctic cruise planned with my youngest son for the end of May which cost thousands, and I can't get the money back at this late date. Everything is in turmoil. I fell like if it's mets I'll have to break it off with my boyfriend - there's no reason why he should have a dying girlfriend, he deserves better. All the bad scary thoughts swirling around in my brain again... but if I talk to my psych I'm sure he'd commit me again. I have no one to talk to and no where to turn.
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Minxie, I am glad to meet you. You have quite a story, a history, thank you for sharing it with us. I do hope you are in touch with a professional, a psychiatrist or some mental health professional. As much as we want to help you, you do need professional counsel. Having said that, I will give you my 2 cents as they say....I would go on the cruise in May, and enjoy every second of it. I hope you feel up to it. When do you have a follow up about the mass in your lungs? And let the boyfriend be a support...if he is a real man he will be one, if not you won't have to break it off, he will take care of himself. Please know you are in my thoughts and prayers.
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Shorfi,
I just had this same rant with someone the other day. When I was diagnosed a little over a year ago, it was on a routine mammogram. I had no family history, I was not overweight, didn't smoke, ate well, exercised a lot, etc..Never took hormones, had early menopause.I even breastfed my babies, etc... All the things that were supposed to reduce my odds. STILL, often times when I told someone my predicament, the first questions were concerning all of the above. In other words, what did I do to get this AND let's explain why it's me and it couldn't possibly happen to them. It was so annoying. My MO told me during my first visit that I couldn't do a thing about my 2 biggest risks...1. I am over 50 .( I was 53 at dx) and 2. I was a woman.
That made me feel a little better. BUT, even if I did smoke, and was 100 pounds over weight - that would not mean that I caused my cancer. AND, even people that get lung cancer after decades of smoking deserve care and love, not judgment. GRRRR.
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I've noticed some lower right groin pain in the past two weeks and of course after having breast ca my mind goes immediately to ovarian cancer. I see my new oncologist (I recently moved) this week for 6 month check up and will ask for a CA125 test. Are there any other tests I should ask for? It may be a muscle pull, a hernia or a kidney stone forming, but I'm still scared.
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Thank you Georgie...this same person was telling me about a friend of ours who had a stroke over the weekend. And she said "they are always going out to eat all the time, that is why she had it".
I'm just in a funk about my friend having the stroke and I told this woman, the fact that I am a woman and she is a woman...we can get this dreaded disease. I've had numerous friends who lived clean lives and still get BC and strokes as well. Guess what...I bet she won't say anything negative EVER AGAIN!!!
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minxie: I dunno what to say, other than that you're in my thoughts. *HUGE HUGS*
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I'm desperate for some input and advice. Okay, my exchange surgery is in 2 days. You all can see my DX and treatments thus far in my signature (diagnosed via core needle biopsy November 17, 2015 with left breast DCIS stage 0, grade 3 with comedonecrosos, ER-/PR-, HER2-) and decided to have nipple sparing BMX (December 18, 2015) instead of the lumpectomy and radiation recommended, in order to be thorough enough to hopefully never hear the words "you have breast cancer" again. Post op pathology only added the SNB 0/4 negative.
Once diagnosed I pushed to move forward ASAP....... I saw the breast surgeon at her small local office at Genesys Hospital in less than a week, made my choice of BMX then asked for a referral to a PS that my breast surgeon was comfortable working with. Her recommendation was a PS that worked out of Beaumont Troy (an hours drive away) near the breast surgeon's main office and again in less than a week I saw the PS as recommended. Things moved very fast (at my request), and I had my surgery almost exactly one month from the day of my diagnosis. So, I didn't see the breast surgeon again until the day of my surgery; I wasn't seen in her Beaumont Troy office until my 10 day post op visit. My BMX surgery and TE placement took place without complications, and I followed with my PS for saline fills for reconstruction over the last 4 months.
Now I've been reading different threads/boards on this site since just before my surgery. As I am TN myself, I have been reading this thread on and off which lead me to start wondering whether in my haste I had missed a critical step. I've been waiting and procrastinating.....too scared to ask this question, but here goes......
Has anyone with my diagnosis NOT been referred for an Oncology consult? This topic was never brought up to me.....I was never told that I need or don't need to see an oncologist. It was NEVER discussed. But, with reading through this board I have come to the conclusion that maybe with the change in offices/hospitals that it's possible this step was overlooked? Was I supposed to at least consult with an oncologist.....even if it was to say that no further treatment other than the BMX was recommended? My PS didn't have an answer for me because his practice is NOT exclusive to breast cancer reconstruction.
This question is driving me crazy. I can wait to ask my breast surgeon at my 6 month follow up appt June 22.......but should I wait that long? Any and all input is welcome. Is there anyone else out there who was triple negative and not referred to an oncologist?????
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Georgie & Shorfi....I really hate when "BC FREE" women think they have the answers and reasons why some women get breast cancer. There are so many so called "reasons" If you want to make them all valid you can go crazy. Stress...low vitamin D...not enough sleep...overweight...not enough exercise‼️ I was told by my MO that the main factor is ....we are WOMEN. He said that studies have shown that breast cancer lives in our stem cells. It is thought that some women are born with breast cancer. This is why, he explained, that ER+/PR+ breast cancer can come back even 25 years later. Actually, this happened to my neighbor. So, because we are women, we got this lousy disease. Nothing much we can do about it now except keep plugging away with hope and living the best lives we can, day by day. That's the way we all should be living, especially those women who THINK they have all the answers
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georgie61 and shorfi: Tell those folks to FVCK right off!!!
My mom (my soul-mate, best friend, and superhero) rarely, if ever, ate junk; she always incorporated fresh fruit and veg into every meal. She was always active, never smoked, had *maybe* a few sips of wine per year (on holidays), was never overweight, had her first child (me) before age 30, and breastfed all three of us kids. She was diagnosed with breast cancer in 1992 at age 50 (she found it herself; her docs wouldn't listen); I'm guessing that if they had the tech then that they do now, she'd have been diagnosed in her late 40s, like me. Lumpo, chemo, and rads; then a recurrence less than 5 years later (MX with chemo and rads, at that point). I don't know if hers was TNBC, but she didn't qualify for Tamoxifen or Herceptin back then, so I'm guessing it was (I have no access to her medical records and my dad won't request them for me, so...). For years she lived in terror of another breast cancer recurrence. Seemingly out of nowhere, ovarian cancer reared its ugly head and stole her from us just after Thanksgiving 2006 (she was 64).
Mom's oldest sister has been a raging alcoholic since her teens. We used to make fun of her because she'd inevitably bring her gallon of Gallo with her to every family gathering, consume nearly the entire thing, and then start nasty fights with everyone (especially Mom). As far as I know, she's never exercised; she's overweight, she's always eaten loads of meat (red and otherwise), bottle fed her two daughters, and smoked for years. She's got Type II diabetes now, and had to have a hip replaced about 15 years ago. But, barring any unforeseen circumstances, she'll turn 80 this summer.
There is no justice.
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Anniekay... Many people here know much more than me, but I would think that you absolutely need to see an oncologist!! Do you need chemo? Radiation? Again, just my opinion, I would be calling today!!
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anniekay
I agree, I would get an appt with a breast MO. You may not need chemo because your ca was DCIS, but I think youwould feel better if you explore all options. I had no radiation because I was node negative and had UMX, but chemo because of the IDC with DCIS. Good luck and get the appt so you will feel better!
Minxie, i am thinking and praying for you.
And yes, we Did Nothing to get this LousY disease! Our risk factor is that we are Women. As per my NYU MO.
Hugs to all
Arlene
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Annie - I would have to agree with others. I'd call your breast surgeon and/or plastic surgeon...anyone who's been part of your team thus far and see if they can help you get in to an onc. You might not need chemo, but it's better to cover all your bases.
Minxie - sending you many hugs and prayers. Please keep us posted.
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Thank you everyone for your input. My instincts were that I should have seen an oncologist, but then second guessed myself thinking surely the BS would have referred me if I needed it. But I do know Dr's no matter how good they are can make mistakes.....and I did rush them to get surgery done before end of the year cause we had already met our very high deductible.
I will see about getting a referral for that consult as soon as I recover enough from my surgery to do so. My mind is already more at rest just knowing what the next step should be. All of you ladies are the best!
Cyber hugs....
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I wrote a desperate email to my wonderful oncologist, and he arranged to come in to the office and see me even though he was on vacation. He said it wasn't really a "vacation" as he was studying for boards, but I'm so happy and grateful that he did. He set me up with an appointment with a thoracic surgeon, who I met with today. He also set me up with a PET scan, which is very much needed before we can move forward. Problem is the PET scan isn't until May 5th! That's the soonest they could get me in. The thoracic surgeon is trying to get me in for a PET sooner with his medical group. He also wants a brain scan. The PET and brain scans will determine how he proceeds. If it's an isolated tumor he wants to do surgery - removal of the lung lobe. If it's not, well, we all know what that means. So more waiting and wondering and worrying for the time being. Interestingly, the thoracic surgeon said his first guess would be primary lung cancer, then mets. Never thought I'd be wishing for lung cancer, but it's the better alternative by far.
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@HausFrau - here's my two cents on the ovaries. I am BRCA positiveso I knew they were going to have to come out. And I wanted to do all my surgeries at the same time but the surgeons' schedules didn't work, so I had the BMX and reconstruction, then chemo, then rads, and then the ovary removal. Looking back I am very glad to have it work out this way. One, the BMX was bad enough to recover from without my lower torso hurting too. Two, it was nice to still have working ovaries going into chemo. Three, after the ovary removal, the menopause symptoms are so much worse than the mild ones from chemopause (I am 48). Surgical menopause (when you take out the ovaries) is like hitting a wall (sleep issues, hot flashes, metabolism changes, etc) and I would avoid it unless there is a really good reason. I am taking Effexor at a low dose and it is just starting to help with the symptoms. But unless you are BRCA pos, or there is a compelling study I would hang onto them.
Others might have a different perspective.
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Minxie dear friend here I was thinking you had gone on your cruise and was living your life to the full. What an awful time you have had. I knew you were having marriage problems and I'm sorry to hear that it broke down but thrilled to hear you have a wonderful new man in your life. Sometimes bringing up blood can be for other reasons so I am hoping for the best for you. Give your man a chance. You say he is wonderful, so give him a chance to show you just how wonderful he is. He might be just the comfort you need by your side while you are going through these tests. Thinking of you dear friend and will be in your pocket as you were for me. xxx
Ally dear one I am so sorry that your surrogacy didn't work out but I am praying that the next time will produce your wonderful baby that is so badly wanted. Hugs always. xxooxx
From one Annie to another Annie, welcome. Yes as Ally and Greenae said cover your basis. Call your BS and get yourself into an oncologist as soon as you can. They will be able to advise you on your next step if there is one. Don't hesitate, I would be making an appointment straight away in case there is a long wait for an appointment. Get in there girl and put your mind to rest. You may not need treatment but only an oncologist can help you there.
Mike I can't go back on my computer to read your post again without losing all that I have typed but congratulations to you and Kathy. Hope you enjoyed your vacation in Florida and glad to know you are back.
Shorfi in relation to whether we did or not do anything to get cancer this is a question we all ask ourselves. But, it is what it is and there is nothing we can do about it. We didn't cause breast cancer I can tell you that for sure. Being fluffy will not cause it either so take no notice of the people who speak but do not know what they are talking about. I know people blame it on alcohol but if that is true why did I get it because I have never drunk alcohol in my life. Why do non smokers get lung cancer. Why does someone who only eats healthily and exercises get it. It's the luck of the draw unfortunately. The trick is to pick yourselves up and get on with the rest of your life as best you can and pray for hope that it never returns.
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Ladies, I am so excited I can barely stand it!!! I am scheduled for my tissue expanders to be finally removed and my new silicone implants to be inserted!!!! OMG!!! I cannot wait. What a ride. Phew!
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Cocker, - you, and many others here, write so beautifully that I have little to say that can add to your thoughts. Thank you for posting what I can not say so eloquently!
Curly,- Good luck with your switch! It will be a wonderful change for you!
Ally, - You have been in my thoughts, - and I have my fingers crossed that the saying 'third time's the charm' is the way it will be for you!
I really should keep notes as I read the posts, so that I can remember the many responses that I plan to make!
Re that bump on my neck, - the enlarged node now seems to be a tendon (according to a sono that I had on Monday. Whew!). My bloodwork is not perfect though, so I will be retested in a couple weeks.
Thank you for being here! You are all in my heart, - even if I dont post often or mention names.
Hugs from NYC
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Ally, thank you for the update, I have not responded earlier, as every time I tried my words stopped and my heart just poured out silently to you. That is not a good description, but I just ache for you so strongly, that words fail me. I am brighten by the fact that you sound upbeat and in a good place....and for this I am so thankful! Please know how much we all love you!
Curly, yay to you! New boobies!
Another, thanks for the update on the bump, great news!
((((COCKER))))
Hello to all!
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Hi Val,
I am right behind you in treatment. I was wondering how much your tumor shrunk? I finished A/C end of March and have had 3 Taxol treatments so far. I was 3 cm to begin.
Thanks , Janice
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Hi Janice,
Wanted to chime in and let you know that I finished AC on 03/23/16 and had to have an ultrasound due to a lump in my other breast (first and only lump I've ever been able to feel throughout this entire ordeal that turned out to be just a cyst) but when I had the ultrasound my breast surgeon checked my cancer side at the same time and said my lump went from 1.3cm to 9mm and the lump in my lymph node went from 1.7cm to 5mm. I have since had 2 of 4 dose dense Taxol. Sadly my MO said no more scans until after surgery (unless I find another cyst to be checked ha ha!) so chemo seems to be doing what it's suppose to. I just wish it didn't suck so much!
Maryann
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Hey Janice
Since i have IBC and and 2 IDC tumors, it was easy for them to see an improvement. On AC my 2 IDC tumors all but disappeared,and my IBC symptoms have all but gone. The largest IDC tumor was 4cm and now is less than 1 cmm per the ct scan. I had a swollen lymph node even I could feel and it lit up the pet scan, now you can't feel it. So they are hoping for good margins.
I always knew and expected chemo would not possibly get rid of it all, but at least shrink it, and that appears to be what has happened. I have susrgery May 24.
Ofcourse you never know till you get the pathology report.
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Wanted to let everyone know that even though I don't post much, I read everyday and appreciate each and everyone of you
Maryann
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Maryann, great news, happy for your response to chemo. I am glad to hear from you and thank you for being here with us.
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Janice, I had AC and now on weekly Taxol/Carbo, just had #6 yesterday. My tumor was 4.5x4cm and you can't feel it anymore. My node was 3cm and that's not palpable anymore either. Both my MO and BS are very happy with my response, as it took a while and we were actually talking surgery if it didn't start to respond. But as Val said, we really won't know everything until surgery.
Best wishes to you
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of course, thinking of you Val, Janice, lifealoft, every one in treatment and approaching surgery
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Hello ladies
Just wanted to let you know my exchange surgery went well yesterday. While I was there I asked every nurse and resident...basically anybody dressed in scrubs if I should have seen an oncologist. 100% were first completely shocked I hadn't seen one, then they read my chart, then they all gave an answer of "yes, see MO ASAP!!!
So all you kind ladies were absolutely right! I knew you were right already, but it's nice that all the professional nurse's (who IMO often know just as much as Drs but work harder and are more approachable and understanding) .....well they confirmed y'all were correct in your opinions. Thanks again ladies.....you really lifted a burden from my shoulders!
Cyber hugs........
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anniekay-- if you want to come to Beaumont Troy for Oncologist--I love Dr Hanna and his office. Can't recall his partner at the moment they are awesome
Minxie- good luck with the scans but I would still go on the cruise!!!!!!! Assuming medically it's ok kwim?!
Just finished #3 taxol and home a few hours. Itchy eyelids have already started. What the heck people. Strangest SE! It will last til at least Monday.
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Hausfrau, have you told your doctor/nurse about the itchy eyelids? I have a lot of allergies and that can be a sign of a systemic allergic reaction. They may want you to take an additional antihistamine.
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