Calling all TNs

Radical2Squared

I started the coq10 question here recently. What I've learned is it seems to be like anything else. Some studies show good to prevent cancer recurrence, some show it elevates cancer risk. Almost all agree it's good for the heart.

With regard to the reflux issues. I do thInk chemo causes major g.i. issues. Our oncologists don't seem to mention this as a long term effect though. They seem to think people only experience heart-burn and diarrhea DURRING treatment. Seems to me once the gi lining is damaged, it only makes sense that these things continue to be a problem.

SpiritBlessing

Thank you simple life...I will mention it to my MO as we are I our way now. I may google it and see if I can get more info. Also about the DCA as well. 

Thanks so much appreciate any and all helpful options to consider. 

Have a great day ladies!!! Lucy

simplelife4real

Stephanie,  I'm so sorry to hear about your heart issue.  I know Adriamycin can cause heart failure even years later.  That's why the dose is limited on it.  I don't know much about it other than that.  Have you posted on the chemo portion of this site about it.  Maybe the moderators can help you locate the portion of this site where you are most likely to find other people with the same issue.  That is a hard thing to be dealing with particularly at such a young age.  Did you have adriamycin?  Also, I hope you find a cardiologist that you feel better about.  Hugs, Kay

julz4

Hi,  I don't come often anymore, but I thought especially all my TN's should know what happened recently to me.  It's very important!  Please read!!!!!  

A RANT with a WARNING! I am 2 1/2 years out from surgery & my Final Pathology report! My Surgical Oncologist was recently made to retire. I knew this was going to happen but a little sooner than I expected. So I had thought for many years that I would go to John's Hopkins. I had my first appointment a few weeks ago. Last night I went in to set up my electronic account & found that they had Their Pathologists read my Slides from surgery. Was I floored! My first report read 3 spots of micro-invasion each less than a mm. My second report from Hopkins read 4 possibly 5 spots of micro-invasion & also one Invasive spot of 1.5mm!   All still ER & PR negative. My concern is the Gray Area I am in with being Triple Neg & that at 4-6 mm they will do Chemo. I did not do Chemo & I also know that my treatment is fine for my diagnosis with just RADS. But what scares me is others who might be on that fine line closer to the darker grey area. Please Get a Second Pathologist to look at Your slides! Totally independent from Your Hospital/Dr's/Pathologists! Had my Invasive part of my Tumor been closer to the 4mm only to find out over 2 years later that it was larger.....,I shudder to even think about it! It Never Hurts to have 2 Separate Sets of EYES Looking out for US!   PLEASE get a second set of Pathologist Eyes from a total different Hospital to take a look at your slides from your surgery!  Thanks for reading Julz

Radical2Squared

Thanks for the heads up! I did get two people to read my slides but it was by accident. There was a slight variation in what the pathologists say so I'm guessing this is actually a common thing! Borderline diagnosis should probably be double checked!

Tobycc

thanks!

Cocker_Spaniel

Thanks for the info Julz4.  Will check it out.

sandejosgirl

@simplelife4real  I'll head over to the chemo section.  I didn't think to go there as I am almost 3 years out.

I also had a second opinion done about 3-4 weeks after my local hospital did my pathology, I decided to head to a major medical center with a really great med school.  After checking things out, they actually sent for my original tissue.  Changed my status from ER/PR+ to TNBC.

I had another friend who discovered that her Onc MISREAD HER ENTIRE PATH REPORT! and she had invasive ductal AND invasive lobular cancerous tumors.  Always ask for a copy of all lab/path reports.

Cocker_Spaniel

This is just shocking to read that lab results are read wrongly by "professionals".  This is your life in their hands and they are playing at doctoring.  Yes, get a second and even a third opinion if your mind is not at rest and you don't feel confident they are not doing everything possible for you. 

SpiritBlessing

I totally agree with second opinion. It was my second opinion team that pursued the nodules on my lung that showed up on my first CT scan. The first 2 teams ignored them and told not to be concerned because people have nodules all the time. Granted I think it was because I had no nodes involved but they should have ruled them out. Unfortunately they were also TNBC but so glad I did.

Always trust your heart and your gut.

Radical2Squared

spirit, I was also told I have visuals in my lung and we'd address it at a later date. No one has addressed it yet. Guess I know a darn good question to ask my bs next time I see her!

SpiritBlessing

Radical please do follow up. You know we all have to be our own advocates for our care. I have certainly learned that back when my mom was in her last days. It's really bad so we just have too.

I heard from a friend I met on a board last year and she has TNBC and she had nodules on her lung like me and our story was very similar. she was telling me that the past few weeks she was having bad headaches and so the did an MRI and they found 7 small lesions on her brain in various areas. She is going tomorrow for the gamma knife treatment. The docs say she will do well. She was dx 4 yrs ago on her breast then last year her lung. She has not had any chemo at all for the lung just a couple of RFA treatments. Have any of you heard of this? RFA is Radio Frequency Ablation where they go in and zap the tumor/nodules with a laser. Then they watch to see if it is fine.

Just wanting to know if anyone has heard of this or something similar.

Lucy

relocatedtarheel

Anyone on the board from NC? Is there a NC specific sub-thread on here anywhere? I just moved back home to NC from Northern Va where I was diagnosed and treated and spent the year of hell :-) I am interested in finding any groups of ladies in the Raleigh area-there is a thread of just northern va ladies who get together periodically, recommend docs, etc. I will need to transfer my records to a new oncologist here. I finished chemo in Feb and Rads in June...now living scared.

jenjenl

I live in Charlotte, nc

Luvmydobies

Hi Relocatedtarheel! I'm in Pittsboro NC. My Onc is at UNC and is great. There are other ones there too who are good too. I can give you some suggestions if you'd like? You can PM me also. I'd love to meet up with you and others also!

Saskia3

Hi, I was diagnosed at age 47. I had a mastectomy and then chemo Flourouracil F5, Epirubicin, Cyclophosphamide x3 every 3 weeks then Taxol x3 every 3 weeks and 15 sessions of radiotherapy. To be honest, I had no idea about my diagnosis. I received the letters but they made me cry and didn't make sense so I just filed them. I kind of had it in my head that I that the doctors knew what they were doing and I just had to get through the treatment, which I did. I recently had my first mammogram and they found a suspicious mass but it turned out to be a benign cyst and I was given the all clear on 14th October 2014 and the next step was reconstructive surgery and I was advised that this could be done before Christmas - oh joy, all over with and new boob for Xmas for being a good girl! At least I had 2 weeks of this joy as I then found a lump just above my left collar bone and the appointment that should have been discussing reconstruction was biopsy on this lump and on another they found under my right armpit. They told me it could be a number of things but with my history I should prepare for the worst. On Wednesday 5th November 2014 they told me the breast cancer was back (both biopsies showed breast cancer) and it is incurable and its now a matter of managing the cancer to maintain best quality of life. Since then I have dug out all the letters I had previously filed and did some research to understand the terms. I do not regret the way I dealt with this and think if I had understood at the beginning I would not have got through the treatment as well. Ignorance sometimes really is bliss. The hardest part for me was telling my 17 year old daughter (who actually took the news better than my friends). I can deal with the fact that I only have a short time to live (Consultant said possibly as long a 5 years) and have already started to go through my things and have started a bucket list, and I'm fine with this until I think about my daughter and the time I won't get to spend with her, and it is the only thing that makes me cry and I think it always will.

Radical2Squared

saskia3,

Don't put an expiration date on yourself. Good to get everything prepared and start knocking things off your bucket list. Once that's done, go live life like never before! Take real pictures (not just ones that stay in people's phones and computers) so your daughter will be sure to have tons of them.

SpiritBlessing

Saskia so sorry to hear of your latest findings. We are all pretty much very aware of our outcome from this horrible disease. My first question is, do you have a faith? I am a very strong Christian and I know it is what gives me strength? You don't mention when you were first dx only your age and the date of your recent dx? I know what you mean about the sadness you feel with your daughter. I have a daughter and a baby granddaughter who is 2. It saddens me too so I don't think about that much and try to just live each day to it's fullest. I am still working and exercising as I need to for medical for my husband and myself. He is afflicted by something in his nerves and had to retire early and has been fighting for disability and has been turned down twice. We have an attorney now and waiting for court date. I am currently on a study trial and have been doing well...thank God. I did Abraxane and Avastin weekly for 6 months and still doing Avastin every 2 weeks and a targeted therapy pill daily. So far it has been doing well as I have nodules on my lung. When I started it was 5 and we are down to 2...another praise God!

Where do you live? I live in Washington state.

Stay strong and positive...Lucy

simplelife4real

Saskia, I'm so sorry about your recent stage IV diagnosis. My heart goes out to you. I wish there was a magic wand that doctor's could wave that would make it all go away. (((Hugs)))

Saskia3

Thank you Radical2Squared, real photos are so important. I have 2 photo walls in my dining room - 1 of me and 1 of my daughter, but most of them are from before digital cameras and mobile phones. When I was collecting up my special things (so they are all in 1 place ready for my best friend) I came across 3 rolls of film - 1 labelled summer 06. My job for tomorrow is to find somewhere that will develop them and buy discs and take off all my photos from the computer and get those developed too. I am actually quite excited about the rolls of film - will let you know how they come out

Saskia3

SpiritBlessing, I was first diagnosed 17th July 2013. Unfortunately I don't have your faith, although I know I will be joining my Dad, little sister and other friends I have lost. I live in England and we do not have the medical resources you have in USA, unfortunately. I am also extremely needle phobic and cry like a baby each and every time (my teenage daughter holds my hand at the dentist!). I have now changed my diary from being my work diary to being my social diary and accepting every invitation I get (I am even going to a jumble sale on Saturday - I used to love them but haven't been to one since I was about 14 or 15), horseriding, big party in London and bought my 50th birthday party forward 2 years just in case - if I make it to 50, I can have an even bigger party. The time I have left is going to be such fun x

Meadow

Saskia, I am sorry about your cancer. It just isn't right or fair! I know many stories of people who were given X amount of time, only to live far and beyond their expiration date. So please, do what you are doing, making plans and enjoying everyday....and keep up the fight, for the docs are not always right. I am glad you have found us here. So I am curious....what is a jumble sale?! Whatever it is I love the name!

Saskia3

Hi simplelife4real, I was a little confused by your reply, thinking I never said I was stage IV but I am very new to this and only just started looking into it - am assuming stage IV is the cancer coming back. Thank you for your hugs, hugs are the best xxx

Saskia3

Hi Meadow. I am also glad I found you all, it is amazing talking to others who just know. I am going to have as much fun as I possibly can while I am still here and not waste a single moment. A jumble sale is where people collect clothes and bric a brac etc and sell it really cheaply in a village hall or scouts hut to raise money for Scouts or Guides or some local event or charity. It's like a huge charity shop but just for a few hours and much, much cheaper.  All the clothes are just piled on tables and you just rummage through them - it is such fun. As a teenager I had the biggest collection of coats which I bought from jumble sales for just pennies - my Mum had to put up a coat rail just for me xxx

Radical2Squared

saskia,

Cancer stages run from 0 to 4 usually denoted with Roman numerals.

Stage 4 refers to cancer that has metastasized and appeared in another part of the body. If you search for it on these boards, there is actually an entire separate thread with all women who only have stage 4 cancer if you are interested.

Saskia3

Radical2Squared

This time last week I was totally ignorant of everything but it is amazing how quickly we can digest information when we need to. I know I need to check out the Stage 4 threads, have been plucking up the courage - it has been an emotional rollercoaster of a week - but I no longer feel alone and today is the day I can accept I am Stage 4 and check it out. Thank you for your support x

Radical2Squared

saskia,

Everyone on these threads is here for you.

simplelife4real

Saskia, we are here for you. (((hugs)))

Saskia3

Thank you ladies, I really feel I have turned a corner today. I am feeling far more positive, looking forward to a girlie weekend with my daughter and friends and preparing myself mentally for the next fight - which I just know is going to be having another line put in under local anaesthetic, but I did it before and I can do it again - and if I am honest, once that line is in it does take the stress out of it as they can put the drugs in it and take blood out of it without any needles - and I would prefer it in my arm again rather than my chest. Just going to deal with one thing at a time and this is the first thing to deal with as my veins couldn't cope with the chemo. It's not such a big thing really and I was quite proud of my Borg implant last time. And whilst I am preparing myself mentally for this, I could do some research into diet - the Budwig protocol has been recommended. If anyone has any other dietary tips, they would be most welcome.

Being part of a supportive group is such a fabulous feeling - this 2nd fight I will not be doing alone and that gives me strength xxx

simplelife4real

Saskia, I'm glad you are getting a line put in. You are right, it will make blood draws and infusions much easier to do. In terms of diet, there is a lot of information out there and I've done a lot of research on it in the past year since being diagnosed. That being said, as far as I can see there is no one clear winner in terms of what is the best approach to eating. I chose to eat as healthy as I can, organic as much as possible. I wish there was a "clear winner." The two things that my MO has stressed is keeping my vitamin d levels up and doing 30 minutes of exercise five times a week. No matter what our physical condition, getting a little exercise, whatever kind works best for our own individual physical state, helps with quality of life. While doing chemo, there were times when 10 minutes at a VERY SLOW pace on a treadmill was all I could manage. Even small amounts of exercise/movement can help us feel better than none at all.

I'm glad you have some fun things planned for the weekend. ((hugs))