Calling all TNs

VL22

simplelife4 - greatnews! It is wonderful for you to share such promising and uplifting news with us

HeartdesiresLife

Dear Rebekeh - clear PET is definitely worth dancing about!!!

Thank you everyone for showing all the support of the newbies!

Theresa

Warrior2016

Such good news, Rebekeh! It helps us all to keep up the fight when we hear that good news does happen!

Titan - most of my stats are posted when I post but I can add a bit to it. Diagnosed 10 months ago at age 64. I am now 65. Since then I have had a 2 month round of chemo, a 3 month round of chemo, a bilateral mastectomy, 2 months of lymphatic PT, and I just finished a little over a month of Xeloda - I'll be finished around Thanksgiving. My cancer is triple negative and very aggressive.

I read this thread often as I learn so much from it or it gives me a smile, a laugh, or some encouragement.

I'm an emotional wreck right now - I think my roller coaster ride has slowed down a bit and all of a sudden I am trying to process what has happened to me in the last 10 months. I also have 2 friends who just died of cancer and my Golden Retriever's kidneys are failing. Willow has been my rock through all this - she's the one who curls up with me when I cry in the middle of the night. She's the one who tried to paw my tumor out and now that I have no breasts she leaves my chest alone. She has been on this journey with me and now I need to help her on hers but, honestly, there are times I don't think I can even breathe. She was born with kidney dysplasia and was not supposed to live past 5. She's 8 and we knew this day was coming but I can't believe it's here. Damn.

MakeupLover

Warrior2016

your post made me tear up a bit about your dog! It's so sad, I have a cat and it's amazing how our pets can know/feel that something is wrong with us.

Since I've been diagnosed my cat wants to be with me all the time, meows loudly so I can let him in my room. He is the cutest! Just holding him makes me feel better. I'm sure Willow does the same with you, especially the part about clawing at your tumor.

hang in there and cherish the moments you still have with her *hugs*

VL22

I'm so sorry for your heartache Warrior. Our pets just give and give don't they? My husband laughs at me because as much as I love him and my family, I've really been leaning on my cat to get me through - sounds insane to most, but not to others who are going through this.

I know there is really nothing I can say, but just know others understand and are thinking of you and Willow

LRM216

Good morning to all you fine ladies and gents:

Don't post too much any longer, other than when I have something to share, but I do come on to read up on all the current posts and thought you might be interested, if not read already, to see this:

https://medicalxpress.com/news/2017-08-achilles-heel-supercharge-breast-cancer.html

Blessings and hugs to all,

Linda

rdeesides

Warrior, I feel for you. Losing a beloved pet is the same as losing a family member. Hugs to you and your dog.

All, I got an all clear on bone scan and lymph node biopsy as well. Yay! But here is the hard part, and I would love thoughts/feedback. Dr. says even though lymph node biopsy came back clear, she is still concerned because they were clearly inflamed on the MRI and Ultrasound. She said the biopsy could possibly be a false positive (as in when they took tissue they didnt get the cancerous parts) or there even could be micro-mets there. If we are operating under the assumption that I am clear on lymph nodes, she would recommend surgery first and a reduced amount of chemo (only 4 rounds vs normal 8 or 16 depending on if you do DD Taxol or not). BUT if we are concerned about lymph nodes she will recommend the chemo first, 4 rounds AC followed by 12 wkly Taxol, and then surgery. I am inclined to do chemo first even though that is the more aggressive option. I dont want to look back in 2 years and have regrets if something spreads.

Dr. is also checking into if I am eligible for the I-Spy clinical trial. I am happy about that but worried that if I do go with that my care may be delayed another couple of weeks. I found my tumor on 6/5 and we are two months out and I havent started treatment. It's taking it's toll on me emotionally.

Rebekah

VL22

Rebekah - I get your anxiety with waiting. If it were me, I'd be as aggressive as possible as soon as possible. Personally, I would pass on the clinical trial, if only because the wait has already been so long. No clinical opinion here, just based on emotion.

HeartdesiresLife

Dear Rebekah, I don't know how far apart your ultrasound and MRI was but during my first ultrasound, my left lymph nodes were 3x larger than usual.  These fortunately came back clear but it is true, you never know.  Then I had my MRI about a week later and 1 lymph node was found to be abnormal in appearance.  This was the main lymph node they were trying to biopsy but missed.  From what we have read in this forum, it appears even with some affected lymph nodes cancer can be treated successfully.  I guess the main question I would have other than what the clinical trial can do for me is how long before they can enroll me and get me started.  Timeline would be what I would be most concerned about.  I think it takes amazing fortitude to walk a steady path when dealing with breast cancer and while I would take whatever comes earliest and most aggressive to treat the cancer ASAP, I think you are far more levelheaded than me.  So please do ask what the potential 5 yr and 10 yr benefit would be with each of the possible treatment.  It may be possible enroll in the study even after chemo/surgery.  

Sending you lots of positive force! 

Theresa

TryingToSaveMom

Haven't been here in a very long time but happened to drop in today and saw this message and Jan's too. I thought maybe this may help give hope and strength to others. My mom was diagnosed as stage 3 TN six years ago next month and I'm happy to report that she's been considered NED since July 2012. Like Jan, her oncologist considers her cured. A happy healthy life after TN is possible. Best wishes to all of you still going through treatment.

Warrior2016

Thanks, all, for the kind words about my dog, Willow. This is her journey now and since she walked with me on mine I'll be here for her. We're trying some meds and some new food to help her eat better. I wrap her pills in a piece of bread with peanut butter...wish they could have wrapped my chemo in peanut butter!

Rebekah - I know it's a hard decision to make and it's yours, but I can tell you my oncologist told me to do the chemo first. Read my stats below - she aggressively attacked my whole body with the chemo, then I did the surgery. Then I got into a clinical trial for TN's who did not have a complete pathological response. She said if I didn't do the trial she would put me on Xeloda. It took 2 months for me to get into the trial and for them to do genomic profiling on my tumor. Then I got kicked into the control group which was Xeloda anyway! If you want to attack this aggressively and quickly start the chemo, you'll need a port. My 1st chemo was 7 days later. I was diagnosed on 9/28/16 and the first chemo was 10/25/16 - 4 weeks from diagnosis. It was great to finally be doing something!

I know we are all different and our cancers are all different but I like the reasoning for the neo-adjuvant chemotherapy - attack the body now and hopefully kill any little bugger cancer cells that are out looking for a place to land.

A friend today got his diagnosis of colon cancer that metastasized to his lung. Unfortunately years ago they found 2 cancerous polyps during a colonoscopy which they removed and then all they've done is monitor him. The colon has shown no evidence of disease. The lung mass was found by accident - CT scan for something else. Another little rogue cell that got loose and found a home. I hate this disease.

HeartdesiresLife

Warrior2016 - I hope your friend's lung mass was found early enough and that he responds well to treatment.  Yes, cancer is quite an insidious opportunistic disease. 

Talking about Willow, my elderly dog Toby sniffed with deep intensity my left breast sometime early part of this year.  I had wondered if there was something wrong with my breast then because I had read a book which mentioned about training dogs to detect cancer.  Even though biotech and pharmaceutical companies may financially take a hit, it is such a less intrusive way to screen for cancer that I hope there will be much more research into using dogs to sniff it out. 

MakeupLover, I hope your cute cat brings you continuous comfort.  Once we fostered two kittens, one of which was more affectionate than any dog! Lovey dovey was one not so attractive, scrawny kitty but its love for you made up for its lack of outwardly beauty and I noticed she got adopted the first week of her availability at the animal shelter.   

MakeupLover

I feel like I am in the same boat! I got diagnosed on 7/17 and still haven't started treatment. Sometimes I get paranoid that the cancer is spreading everywhere!!! I want to start treatment already.

Rebekah, I would go ahead and be aggressive with treatment (it's what I would do) and also like VL22 said, if the clinical trial will delay treatment, I would skip it.

Still no word on my PET scan results. I'll be calling my doctor on Monday, since she's on vacation.

Has anyone here opted for a second or even third opinion prior to starting treatment? I ask because I feel like I need all possible options before deciding on treatment/surgery options.

VL22

MakeupLover - I did get a second opinion. When I first got the mammogram news, I was so distraught I just called the surgeon affiliated with the hospital where I got the mammogram. He was nice enough, but seemed a bit scatterbrained and Ilive in an area with many top notch cancer hospitals. The one I went to for the second opinion in part of the NCCN. Their opinion actually agreed with the first Dr., but the feel there was just so much better. Especially with all of my delays I'm very glad about my decision.

Valstim52

Hello my fellow TN sisters

I'm writing with a heavy heart. My friend Kim, fellow tn, who told me about bc.org. Is now brain dead. She has an aneurysm that burst this morning. They are waiting for all the Dr's to sign off, before pulling the plug. She was an 8 year bc survivor.

Her largest fear, was her TN bc recurring. She was just getting very comfortable with her remission, and then this occurred. She is the one who took a trip to Italy with her sisters to celebrate a year since her dx. She did so many things to inspire me and those that knew her. It has helped reinforce that life is short, and not promised. My heart is so heavy. Just needed the support of my TN sisters.

Val

SCM12

Val - So sorry about your friend. I finished rads two days ago and am trying to found a new normal. I keep telling myself not to think about recurrence because the unexpected can happen in so many ways... It's very sad.

Rebekah and Makeuplover - When I had the biopsy I was told it was very likely malignant and If it were hormone sensitive I would go to surgery and afterwards maybe I would have to do chemo, but if it were TN I would always do chemo first (whatever the size). I researched a little and confirmed that this was quite the idea everywhere. They think due to the more aggressive profile TN should be hit by chemo first and hopefully the disease free survival and the overall survival will be better. I had the biopsy on a wednesday and the next wednesday I had my port placed and did the sentinel node biopsy the same day (at the same time under deep sedation). 48h after I did my first treatment. I didn't have time to ask other opinions.

I can't say if it was good or bad, i know it was all so fast I felt dizzy: it was a succession of problems and fears because every day I had an exam and/or a result and no time to really understand and accept everything. I think a bit more time between things would have been good (how much time? I don't know...) but I still couldn't believe this was happening to me and I already had a port and was starting to worry about my hair and other SE... But now all your tests are done and you had time to really understand what comes ahead and to make some decisions (about work, about family) I would go for the fast track.

Trishyla

I'm so sorry to hear that, Val. It's always tough to lose someone you csre about. It's even harder when it's someone who has made such an impact in your life.

Be glad she had such a good life after her diagnosis. Not everyone does. I'm sure she knew she was loved and treasured.

Sending warm hugs.

Trish

rdeesides

Val, I'm so sorry to hear about your friend. It is so heartbreaking that she overcame breast cancer only to die from an aneurysm. Life is so unfair. My thoughts are with you and your friend and her family. Hugs.

MakeupLover, I hope you get some information soon. I'm sorry it's taking so long to get your PET results. I know it's super frustrating. I am thinking positive thoughts for you.

SCM12, you are right. At least with my tx taking a little longer to get going, I've had time to mentally adjust. I can't imagine what you must have been feeling since yours happened so quickly. I think it's a good thing, but probably more difficult emotionally.

All, I am definitely going to go with the more aggressive option. After sitting on it for over 24 hours, I really can't imagine doing something less aggressive, especially since we are dealing with TNBC. Not to mention I have a 9 year old daughter and my total focus is on doing everything in power to be here for her. As for the clinical trial, they are supposed to call me today to let me know if I am even eligible. If I AM eligible, I will ask how quickly I am able to get in. If it's more than a week or so, I will decline. Meanwhile I have an appt with my MO for Monday 8/14 and we will proceed with chemo instructions at that meeting. I am getting a port put in on Wed 8/9. I am really really nervous about that, but am optimistic since most people on this site have said they are so happy with theirs. This facility puts you under General Anesthesia for the procedure, which seems kind of aggressive to me considering what everyone has said about their experiences. I have mixed feelings about that. At least I will be completely out, but I have never had General Anesthesia before so it totally freaks me out! I will keep you posted. Also, the doctor performing the procedure is a Vascular Surgeon! At least I know I will be in good hands!

Oh, I was also able to walk through the Chemo Infusion Center yesterday and that was good.... just to know where I will be and see how it is set up somehow makes it a little easier to imagine.

Rebekah

HeartdesiresLife

Dear Val, very sorry about the passing of a good friend. I hope all the memories will keep Kim close to you.  

Valstim52

thanks so much everyone. Your thoughts mean a lot to me. So true Tryshla that so many are extremely miserable, even years out. She had a rough 2 years with treatment, then afterwards. Then she says slowly life returned to a semblance of what she wanted. She was always careful not to say back to normal. She would say an easier normal than during treatment.

So glad you are going with aggressive Rebekah. for those in treatment hang on, it does get better. Much especially once your plan is started. Though you will have good and bad days, we are here for you.

For me treatment started so fast I could not take a breath. From dx to chemo chair was 10 days. Then 2 days after first chemo I was in the hospital with a reaction for 6 days. Once my 2nd chemo started I felt more awake and no longer a zombie in my own body. I actually heard what nurses said. Before, during chemo classes, the MO I had my DH and DD3 taking notes. I was in a twilight zone. Then my friend Kim told me to join bc.org. Life saver. I found ladies who were in treatment during the same time, same dx, and those that were 1.2 5 years out. Saved my sanity.

LoveMyVizsla

Val, I'm so sorry about your friend.

About treatment beginnings...I knew I had a tumor in August of 2015, but couldn't get my local,hospital,to diagnose me until October 8th. I didn't like the way they handled things, so I drove down to Seattle for treatment. My surgery wasn't until December 10th, chemo was January 15th, 2016 for the first dose. It seemed interminably long from knowledge of the tumor to action on it, but I'm still here. And no positive nodes.

Hang in there.

MakeupLover

Val, so sorry for your friend

Rebekah, I wish you well for your port placement. General anesthesia can be worrisome but it should all be ok. Ill keep you in my thoughts. Keep us posted.

VL, thanks for your reply about a second opinion. I think I'll go down this route as well.

I guess sometimes going too fast into treatment can be just as bad as waiting way too long, there has to be a nice balance.

I'll keep you all posted once I know results. Enjoy the weekend all

SCM12

Rebekah - For me general anesthesia or deep sedation is a blessing in these procedures, just like having a port that works well. There is enough pain in these situation (physical and emotional). If we can be spared to additional pain that's a great. Don't be afraid. Just make sure you are surrounded by people ou trust.

molliefish

Val, I'm really sorry about your friend. I have a girlfriend who was diagnosed TN one year after my diagnosis. She made it nearly a year before recurrence and is now doing everything she can to be here a little longer with her 8 year old daughter and husband. I think about her every day, and I think positive thoughts for her. I'm not a religious person but I belive in the human spirit. I believe in her... and all of us. As every day goes by we'll fell the sting a little less.

HeartdesiresLife

Dear Molliefish, I hope your friend finds all the help she needs to battle breast cancer.

Rebekah, you also have a young daughter who needs you. So I think you are making the right decision to put on your boxing gloves.

MakeupLover

hello ladies, here is an update, I will need thoughts on what to do...

The pet scan came back all clear! (YAY). The genetic testing came back all good except for the BARD 1 gene; they found a mutation. That's what my doctor said, she didn't say positive. So she told me there hasn't been much research done with this gene to say yes, it definately causes breast cancer. However she thinks in my case, it might have cause it since I am young with no family history. Does anyone have any info on this gene? i've done some reading on it but would like to see if you ladies have personal experience with it.

The ki67 is 60%, dont know if I mentioned this before or not. I have lymph node involvement and she wants to do a dissection as well. My doc wants to do surgery first, followed by chemo and radiation.

I have to decide on whether to go the lumpectomy or mastectomy (one or both breasts) route. She told me to consider whether I'd be ok with the worry and anxiety that comes with getting MRI's and mammograms every six months. Or I could just do double mastectomy to prevent this. She also said since I was so young, double mastectomy would be a better option.

I lean more towards the double mastectomy but I have my doubts and worries about this. I know that if I do this, I will opt for immediate reconstruction where they will put in tissue expanders since I would still require radiation. Then after I could either do a DIEP or implant reconstruction.

It's just overwhelming. My husband supports either choice I make but he also likes the piece of mind that comes with a double mastectomy.

What are your thoughts ladies? What would you do?

For those who have gone through this, what did you choose and are you happy with your decision? Should I consider anything else prior to making my choice?

I'm also going for a second opinion.

HeartdesiresLife

Dear MakeupLover, I don't know if you already saw a plastic surgeon but the one I saw said that with the placement of expanders, there is 50% chance that the radiation will not work and 50% chance that it will. If it doesn't work, then it would be removed. Because of this and that I have such small breasts to begin with, I have decided to wait until I'm ready to do anything about reconstruction following the bilateral mastectomy - if at all. Plastic surgeon mentioned that nipple tattooing can be done. So if you have not seen a plastic surgeon yet, maybe you can seek that opinion as well.

MakeupLover

Heartdesire,

I meet with the plastic surgeon tomorrow, well later today lol. I'll ask about this, but I don't want to be going about my life flat chested, you know what i mean.

The only thing my doctor (breast surgeon) mentioned was that with radiation there might be a chance that my body will reject implants, if I chose them. That's why I leaned more towards DIEP.

I'll for sure ask her tomorrow about this. Thanks for your input!

cassylou

Hi everyone, I haven't been here for ages, and I've just been catching up. I'm sending my love and support to those newly diagnosed, as well and those of us further from treatment. I'm nearly 2 and a half years from diagnosis, and like most of us, I'm just trying to put BC further away in my rear vision mirror.

Hi Rebekah - great to hear about your pet scan, and good luck with your port. I had my first chemo without the port, and what a difference it makes with it. A positive one that is. It was quite sore for a few days, but it made is much easier in the long run for me.

Hi Make up lover - I was found to have the BRCA2 gene shortly after my diagnosis with no family history. I went for the double mastectomy with Diep and I'm so glad I did. I was 40 at the time.If you have any particular questions, just ask away. I'll keep an eye on here in case you have any.

Val - I'm so very sorry to hear of your friend. It's kind of you to think of all of us during this hard time for you.

Warrior - sorry to hear about Willow. Our pets can help us through so much, and ask for so little in return. I'm sure you will take great care of her, and make it as easy as possible.

Muck love to everyone x

VL22

MakeupLover - great news on the scan! I opted for a lumpectomy, but my TN tumor wasn't discovered until the final pathology. I went back to the surgeon and asked if after chemo I should get a UX or a BMX and he said no. He did mention the monitoring, but said survival wise it made no difference. It's a very personal choice and so tough to make.