Calling all TNs

HausFrauMi

Has there been any research to support having Ovaries removed with TNBC with those that are genetic negative???

Just wondering now that I'm having to go thru chemo pause if I should just knock them out when I have my surgery (lumpectomy with reduction/lift). I've already had a hysterectomy at 38 and since I was young my Gyn wanted to leave them in. Now at 42 with breast cancer wondering if there would be any long term benefits?

I know TNBC is not estrogen based so makes me think there is no benefit other than my mom had breast cancer early and there me some genetic component not discovered yet which really does increase me chances.

ALHusband

HausFrauMi my wife is BRCA2 positive so it made sense for her to have her ovaries removed. But just a heads up...her BS and PS would not allow both procedures to be done at the same time as her mastectomy. They said Oophorectomy/Hysterectomy is a "dirty" surgery (<- Their term) and they were concerned about the increased risk of infection that doing both simultaneously posed. Of course, my wife had BMx so maybe the protocol is different.

shorfi

ALHusband...Congrats on you and your wife on her 3 year milestone!!!

Allydp

AL - huge congratulations to you and your wife on THREE years!!!

Meadow - thanks for thinking of me. Hope you've been well! xo

Sorry for being MIA lately. I'm sad to say our friend who offered to carry a baby for us had another miscarriage on our second try. The infertility clinic we're at gives us 3 tries with a 90% success rate after that 3rd try...so we've got one more shot, but it's been pretty devastating and hard to understand. I'm in a Facebook group for the clinic and a very small number of women need the 3rd try...and only 2 out of 100 have not had success out of all 3 tries. On one hand this keeps the hope alive for us, but it's also hard to feel in the crap odds. Our friend has 2 healthy children and no history of miscarriages in the past. We're going on 6 years now trying to start a family. Slowly over the years our options keep dwindling. But I've shed my tears and I'm picking myself up. I was working from home, but that wasn't doing me much good anymore. Too much time with my own thoughts. I'm now working in an office part time, which is helping to keep me more busy and have more interaction during the day. My husband and I are going to start sitting down with some adoption agencies too. I have a feeling I'm not far enough out from the BC diagnosis, as I've looked into it before, but maybe we can get the ball rolling somehow. We could foster, but with an 80+% reunification rate with the birth parents, I just can't do it. At least I'm not there as of yet. Maybe later in life if we're still childless. Physically I've been feeling pretty good lately. I still get reflux flare ups once in a while, and I'm still dealing with all the lovely menopause symptoms, but nothing too crazy. We're starting to get into the 60's and 70's here in Michigan, which has been nice. I love all the seasons, but I'm definitely ready for warmer weather!

Hugs to everyone and welcome to all the newcomers. Sorry you're joining us, but this is a wonderful, wonderful group!

SA8PG

Ally thank you for updating us on what's been going on. You know I will continue to pray for you guys & believe with you for the 3rd attempt when your ready. I'm so so sorry you have to walk this road. Makes me so angry!!!!! Cancer/infertility/losses of babies!

I'm glad you found something outside of the house to keep you busy and keep your mind off it as best you can. Your friend is so amazing to walk this with you guys. A real gem of a person.

Sending you my prayers, love & a huge hug tonight.

G

Lou53

HausFrauMi, I just met with the genetic counselor last week. If my BRCA comes back positive, I will be have the option of having my ovaries and tubes removed as well as a mastectomy (I had a lumpectomy). My rads have been postponed for this reason. She explained to me that the female reproductive organs are at risk and more difficult to detect until it has progressed. Therefore, the recommendation for removal. I am hoping my BRCA comes back negative as the thought of more decisions and surgeries is very stressful!

shorfi

Here is my rant for the day...a friend of mine has always insinuated that being not obese and eating a healthy diet, along with herbs will prevent breast cancer. Yes, I am on the fluffy side, BUT I am so sick and tired of people thinking that I caused this to happen. When I see other women, who eat clean, exercise religiously, do not smoke or drink...they can still with diagnosed with BC. I have a friend right now who is dying from BC...you know why?...she didn't want to lose her beautiful hair...and yes, she does have beautiful hair. When she was initially diagnosed about 2 years ago she refused all treatment...now she is dying. Another friend of mine...an older woman...didn't want to lose her hair and now she is gone with her beautiful hair...such vanity...I'm sorry I digress....

I just wish folks would keep their thoughts to themselves and stop looking at me as if I could had prevented this from happening because of my diet and fluff....

My BS said any woman can get BC...just from the fact that we are women...............

HausFrauMi

shorfi--No $hit!!!!!! Preach it and Triple Neg is not estrogen loving which is what happens more with overweight/obesity tumors from my understanding since fat increases the circulating estroge. But most of the women I see and know have not been significantly overweight OR are health nuts and exercise a lot --completely opposite of the risk factors.

I would live bald for the rest of my days rather than save my hair and let cancer take over.

HausFrauMi

AL- after talking to my breast surgeon and plastics yesterday -- I can have the lumpectomy and reduction/lift but not additional procedures. It's the amount of time under anesthesia. So I can have the ovaries removed just not at the same time. There is no urgency on having ovaries removed at this time. I was just thinking that maybe since I was already "under" I'd just knock it out.

MoreShoes

Ally, I'm really sorry you're going through this. It's not fair. You can try for the 3rd time when you're ready.

Shorfi, it's not our fault we got BC. We didn't do anything wrong and trust me, broccoli and green tea don't help either. As for your friends, people make their own choices for their reasons.

StefLove

shorfi, other than stress in my life, I honestly can't think of what else I 'did' to cause the cancer. We didn't do anything wrong! I've been eating mostly organic and grass fed beef/organic chicken for 4 years at home. Exercise religiously 4-5x a week, don't smoke, drink occasionally, and here I am. TNBC at 34 years old. So your friends argument isn't valid. I wish it were that easy to say it's what we ate, etc. But it's not.

ALHusband

Ladies I think the key words to remember are "reduce", "reduced" and "reduction"...not "elimination". Exercise, broccoli, green tea, weight management, etc, etc, etc MAY all REDUCE the risk of BC...but I don't think any of them purport to ELIMINATE the risk of BC. I think lots of people tend to use those words interchangeably and they are vastly different. I don't think anything eliminates the risk of any cancer! Doing some things may REDUCE the risk.

bcgal

different doctors are of different opinions. I am TN/BRCA2+. I had a bilateral mastectomy as well as my ovaries and Fallopian tubes removed on the same surgical date, December 19th, 201

LoveMyVizsla

My husbands cousin has had stage IV cancer for over a decade now. She is very thin, active and eats healthy. She isn't TN. I don't think she caused her cancer either. People just have no clue what to say to us, do they?

I was on a 3 week AC schedule, and my MO gave me a 4th week to recover before starting Taxol yesterday. Well crap if my lupus rash isn't trying to come back! We are hoping the taxol will knock it back down, but guess what will happen when that is over? Argh.

And in order not to sound too negative, my first taxol went well yesterday. I feel fine today.

Lisaj514

This discussion regarding hyst with ovary removal is very pertinent to me right now. I'm am going to have a hysterectomy due to prolapse of uterus (primary Problem), mild cystocele and mod Rectocele. It has started to affect my quality of life, i.e. Uncomfortable exercising, urgency of bladder and bowel, uncomfortable intercourse (feels like there's no room). scheduled for 6/1 although I'm going for a second opinion next week. My urogyn doc said and research I've done say ovaries are beneficial until your mid 60's even after menopause for bone and heart health s well as cognition and sexual health. I'm 2yrs post menopausal, tn and brca-. She said she'd remove Fallopian tubes as many ovarian ca are actually in the tubes and removing the tubes and uterus actually decreased risk of ovarian cancer as well even if keeping ovaries. My grandmother had ovarian ca (only dx right before death, never treated for it and she also had very high uncontrolled bp and strokes) there is hx of osteoporosis and heart disease in my fam and I have osteopenia and early stages of osteoporosis. MO said either way, if not a hormone+ cancer nor genetic there is no strong indication to remove ovaries and the heart and bone health, cognitive and sexual benefits etc of keeping them is very appealing. Remove if it will make you feel better and less anxious about ovarian cancer but I'm unsure and there's no definitive answer either way ugh. I'd love to hear from women that were post menopausal that had ovaries out after menopause and what were the side effects,sx etc

Btw, yesterday was 2yrs pfc for me! I'm doing well, working 3-4 days per week as per diem OT in rehab and feeling great (except for above issue which is kind of minor compared to bc I guess)

I think about all of you often although I dont post much anymore. All these forums have helped me so much and I have recommended this Website to many people my physicians as well

Thank you all

HausFrauMi

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 :

minxie

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.

Meadow

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.

georgie61

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.

PeggySull

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.

shorfi

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!!!

6feetover

minxie: I dunno what to say, other than that you're in my thoughts. *HUGE HUGS*

Anniekay80

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?????

Cathytoo

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

6feetover

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.

LifeAloft

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!!

greenae

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

Allydp

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.

Anniekay80

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....

minxie

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.