Calling all TNs
Comments
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Fighter, I am so happy that all your other test results came back clear and it is a local recurrence. What a relief! You can lick this!
Curlylocks, first, I'm so sorry about your sister. This disease sucks. Second, I am amazed about how they found cancer when you had your prophylactic BMX. Wow! That must have been a huge shock. I agree, that surgery very well could have saved your life. I hear you loud and clear about not wanting to lose your hair again. I'm sitting here bald and without eyebrows and eyelashes due to AC. I feel like I look like a ghost when I look in the mirror these days without makeup.
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Tifj,
My two sisters were tested, younger sister who passed away was negative for mutuation, my older sister was tested last year and they said her results were uniformed negative. This basically means due to extensive family history they believe the breast cancer in my family is genetic but cannot prove it with genetic testing so far as they only currently test for the BRCA1 and 2 gene in Ontario, Canada.
I was not eligible for testing as the rule here is you have to have "three family members" diagnosed with breast cancer that havent been tested. As my younger sister and older sister were tested they will not test me now as there are only two family members that havent been tested, myself and an aunt. The genetist also said that the chances of me having the mututation for BRCA1 or 2 are like winning a lottery since both my sisters tested negative.
Simplelife4 - Thanks for your kind words. I miss my little sister every single day, she was my "soul sister", we were very, very close. She was way to young to die (44). I had my prophy mast with reconstruction just a month ago and they test the breast tissue that was removed. Yes, I truly believe it saved my life, god knows how big that invasive tumour would be by April since that would have been when I would have gone for regular screening. Never mind, I had dense breasts so it might not have been found:(
Michele
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fighter...wooo hooooo....I am so happy it is a local recurrence. Stay strong through your treatment and we will hear from you soon I hope
Michele...welcome to our wonderful TN family. I am so sorry that you must deal with this again. Hugs and courage coming your way
Mags
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Fighter, I logged on just to get your update, and WOW, I'm so happy for you girl! That's a major victory for you, and this will set the tone for more good news to come your way from here on out. Now you can focus on treatment and soon afterwards you'll be on your way to focusing on the future. So very happy for your update! This is truly a blessing. Thank you God!
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Yoga is very effective for a myriad of reasons - from physical to mental well-being!
For anyone who wants information on nutrition, reduction risk, pesticide guide, metformin study info, etc, you are welcome to send me your e-mail address and I will send you the information I have. It's all in an e-mail - so you get the works - I don't separate it out do to the number of requests I receive. I have each attachment saved by file name of what it is so you can easily access only what you want to.
"Practical Principles of Some Lifestyle-Oriented Breast Cancer Risk Reduction"
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Fighter absolutely great news. You have always been strong and with your boxing gloves on you will send this minor setback to the kerb. Keep going my love and soon it will be a distant memory. Big hugs.
Michelle welcome. You are in very good hands on here. So sorry to hear about your sister, yes she was far too young to die. We will always be in your pocket and the girls on here are full of useful information. Big Hugs.
Inspired glad you came back to us. Have missed your fabulous information which help us all. Big hugs.
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Great news Fighter, prayers are with you. Curly locks so sorry this is back. This new to me that the same chemo can't be used again. I am having AC dense dose for 16 weeks with Nuelasta shots.
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Fighter - So glad to hear that it is a local recurrence. It's a shame you have to go through this again but you can beat this! And, yes, take time for yourself to fight this but do let us know occasionally how you are doing. We are here for you - Best of luck!
Curlylocks - Our stories are quite similar. I have been tested for the BRCA gene mutation and am negative but I have an extreme history of bc on my Dad's side of the family. My grandmother had it twice and it's easier to name the aunts and cousins who didn't have it than those who did. My mother had it in 2000 but she was 78 at the time so they didn't feel hers was genetic in any way - she had an Mx, chemo, rads and did very well. However, in 2004 my younger sister found a lump (she had her mammo 7 months earlier and it was clear). By then it was already stage 4 - she had chemo (which did not shrink the tumour - it grew), then surgery and more chemo but she passed away in 2006. Like you, she was my very best friend and I miss her daily too.
Around the same time, my first cousin on my Dad's side was also dealing with it and we lost her shortly after that.
Since I was considered high-risk, I entered a double blind clinical drug trial for examastane at the Ottawa General Hospital - yes, I'm in Ontario, too. The very good thing about taking part in drug trials is that you are very carefully monitored - therefore, I was getting mammos every 6 months and an MRI yearly. Well, in 2012, the MRI detected a tumour - it actually ended up being two small ones. I found out that I actually was on the examastane (and not the placebo) but it prevents hormone receptor positive cancers and mine was TN. Since then, I have had an Mx and chemo and am 18 months out. While I do get an annual mammo, I don't trust them to find fast growing bc like TN. Therefore, I have an MRI every year which I pay for myself (since I'm not on the trial anymore). My niece (my younger sister's daughter) was able to qualify for BRCA testing once I got cancer and she is negative too - she also gets an annual MRI.
After I got my negative BRCA test result, the genetisist asked if I would be willing to be tested for some other genes which they believe MAY have a connection to bc as well. I don't remember their designation but I did have the test and was negative for them as well.
I am sorry that yours has returned after passing the 5+ year mark. You were very lucky on the timing of your mastectomy and the fact that you caught it so early and have had it removed. Good luck with your chemo and whatever treatments you need.
Doreen
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The BRCA test is now commonly administered with an additional test, called the BART test. It stands for BRAC Analysis Rearrangement Test. The Rearrangement tests to see if the sequencing is out of order. My genetic counselor explained it as ingredients going into a cake recipe, but putting them in wrong produces an abnormal outcome. Many insurances now cover this additional test.
DorMac, can you meet with a BC doctor who can write a script for an MRI, so that you can get it covered? I have MRI yearly as well as ultrasound yearly, alternating every 6 months. My insurance approves it - but I realize you are in Canada - protocols of insurance may very greatly. If you are having problems with insurance approval, maybe you can make the MRI the yearly procedure, and then pay for the mammogram out of your own pocket, if the mammo is less expensive than the MRI.
Curlylocks, thank goodness you had the surgery when you did. We'll be wishing you all the best through this treatment!
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Inspired,
The second test I had wasn't the BART test. If I find the paperwork, I will post what they were testing for (don' t hold your breath, though).
The choice of paying for the mammo and getting the MRI covered is not an option. Here in Ontario, we have what is called the Ontario Breast Screening Program (OBSP) and they decide who and what are covered. According to them:
Which women between the ages of 30 to 69 are at risk of developing breast cancer?
- Women who have already completed genetic testing for breast cancer and have received confirmation of a genetic mutation.
- Women who have not completed genetic testing themselves, but who have a parent, sibling or child with confirmation of the genetic mutation.
- Women with a family history that indicates hereditary breast cancer syndrome and who have greater than or equal to 25% lifetime risk of breast cancer confirmed through a genetic counselling.
- Women who received radiation therapy to the chest before 30 years of age as treatment for another cancer or condition (i.e. Hodgkin's disease).
If you are between the ages of 30 and 69 and identified by a physician as high risk for breast cancer, it is recommended that you have yearly screening using both a mammogram and Magnetic Resonance Imaging (MRI).
My oncologist sent his recommendation for annual MRI testing to them but unfortunately, according to them, my lifetime risk is assessed (for some reason) at 17% - even though I have already had it and it is TN – so I do not qualify for the yearly mammo and MRI. I don’t know what is required to reach 25% but I might talk to the genetic counselor again. I have another follow-up appt. with my oncologist on the 17th so I might talk to him about trying again.
Doreen
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Dor Mac - hugs loosing a sister is so, so tough. My sister was a sweetheart:)
You should be able to get into the high risk screening program in Ontario. My sister lives in Orleans and due to our high risk family history she is eligible for an annual MRI along with her mamo. She is my only sister that doesnt have breast cancer. My older sister also got accepted into the high risk screening program. I will be having MRI's after I finish with my chemo treatments.
Your doctor should be able to steer you in the right direction for this or is their a patient advocate at your local hospital that can assist?
Michele
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Hi, Curly
I live in Orleans too but we are in the process of moving to Elliot Lake but my doctors are still located here so I come back for my appointments. Probably the only difference (to make me 17% instead of the required 25%) is that, although my younger sister (who was also a sweetheart) passed away from cancer, she was over 50 when she got it and died at 53. But I will definitely check again. In any case, I am definitely going to have an MRI every year - so much can happen in a year. Thanks for the info.
Doreen
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Hi, Curly
I live in Orleans too but we are in the process of moving to Elliot Lake but my doctors are still located here so I come back for my appointments. Probably the only difference (to make me 17% instead of the required 25%) is that, although my younger sister (who was also a sweetheart) passed away from cancer, she was over 50 when she got it and died at 53. But I will definitely check again. In any case, I am definitely going to have an MRI every year - so much can happen in a year. Thanks for the info.
Doreen
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Hey fighter..you can do this..I know you can...and you know you can....come back once in awhile just to let us know how you are doing...we care...we love you and want to support you.....you are one of the "old" ones here..lol...
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I have follow up with MO next Wed. I had blood drawn from my Port on fri (tumor marker check, etc). I finished chemo Oct. 25th and am doing rads now (will finish rads Jan 31st). Does anyone have ny advice of what I should be asking about? I'm going to ask about the tumor marker blood work, when my next mammo is (he already old me no follow up scans, etc.) and when am I considered cancer free or NED. I'm also going to ask about my port - does he recommend having it out right away or leaving it in for awhile - it doesn't bother me at all. I also want to ask him about still not being able to have intercourse (too dry, too tight & too sore! TMI) but I assume he'll tell me 2 talk to GYN? Am I forgetting anything? P.S. I really appreciate the info. and support from this group although I must admit it does bother/worry me when I hear someone has lost their battle or had a recurrence.
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DorMac,
Could you check with your Onc and find out exactly how he sent his recommendation to the insurance about covering your MRI? Did his office staff only complete a piece of paper, check a box and faxed it in? Or, did he craft a letter, specifically mentioning the intricate details of your case, and explaining why he requests an annual MRI provided with links and supporting documentation to his request? Sometimes even though there are hard fast rules, there are exceptions. I pulled up exceptions for my health care provider and discovered various factors that could help me to get additional coverage, one being the age at which I was dx'd with breast cancer. But many times specific individual cases call for protocols and treatments that are different than a standard mainstream course. There was a story on the Today show last year where a brother and sister had the identical illness and needed the identical drug. The brother got approved and within days advanced to excellent health, while the sister was continuing to decline in her health because she was not able to get this drug, due to a denial. It was the same insurance provider, same state, and they had the same doctor who wrote a letter for each case and sent it in to the insurance company. What came out of that story was it came down to the person reviewing the request and what they felt was reasonable. The person reviewing the brother's information felt this was reasonable and the person reviewing the sister's information felt it was unreasonable. They went on the Today show, and within moments the health insurance company overturned the ruling and gave the sister the drug. It's a story that had the message, that sometimes it's whatever the health representative decides. It was a very remarkable story. At least no matter what you are able to pay for the MRI and get that for yourself. Maybe you can deduct your out-of-pocket unreimbursed medical expenses on your taxes and try to recoup some of the out-of-pocket expense there.
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Inspired, so glad you are back, love your uplifting posts...thank you for finding the article I was referring to, you are the best!!
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Not sure if anyone can help. I had over the last six months odd little pink spots that come up. The first one lasted about two weeks and then went. Then two more come up just below my scar on the missing lefty. When that went another came up below my scar. Then when that was clear one came on the side of my right breast. That one is still there. I noticed two new ones this morning. Sometimes they are a little bit itchy but thats all. I went to my Doc this afternoon and she biopsied the one on the side of my good (well at least I hope its good) breast. Results in a week. It's funny that they come up and then eventually go. Has anyone had anything like this. I have never suffered with spots of any kind before this started.
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Cocker - You do have something interesting going on, oh my! I'm glad you were able to see your doctor and have a biopsy. Now for the stressful wait. I know you keep busy and hopefully time with fly by. As for my story: For several years I had something that sounds like it might be similar. Mine was just one spot, just about an inch in diameter, that would come, stay a week or two, then leave. I was finally at the PCP when it was visible, he biopsied, and it turned out to be "nothing." Whatever it was, i"ve forgotten. That was on my good breast which is also gone now. Chapter 2: About two weeks ago I found a 2 inch very red spot on chest, about where the previous spot would show up. But then, I got more spots. This time PCP thinks they are an allergy to some new meds I had just started. They are slowly going away. I'll see doc again in 2 weeks to be evaluated again. Guess that will be my chapter 3.
Jan
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Mine ended up being shingles when I had a mysterious rash. It would come and go.hope it is nothing let us know.
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Hello Ladies, I've been off line for almost a week. Trying to catch up now.Fighter, sorry to hear your news but glad scans came back clear. Please check in when you can.
Inspired, glad to see you back!
Welcome to anyone new here. Hugs to all from one of "the old ones"
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Hi All,
Just checking in. I have my last neoadjuvant chemo tomorrow (Tuesday). The next day I meet with the surgeon and get an ultrasound and mammogram. I can no longer feel my tumor at all, so I'm really hoping nothing with show up on the ultrasound. I think mammo's are worthless for me because I have dense breasts, but they are doing it anyway.
Yesterday, after 5 months of chemo, I finally had a friend shave off what was left of my hair. I feel really strange when I look in the mirror, but I think it looks better than the small amount of hair I had. It seems to take a while before hair starts growing back after chemo, so I'm guessing I better get used to this "new look".
I'm guessing pretty much all of us on this thread have "been there, done that" when it comes to being bald.
I find I keep rubbing the top of my head....it feels so strange!
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Hello ladies, its been a long time since I have been here. Just wanted to post that its been three years now since I was diagnosed and just had an MRI done and am happy to report I am still NED. I have spent the last couple of years just living life and maybe trying to forget that I had cancer but the truth is you just cant. I am a proud survivor
Have a wonderful dayKymn
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Fighter -- Best news I've heard in a long time!!! As you can see from the responses, we're all with you on this journey and do understand that you need to take a break from the boards and concentrate on this latest fight. Just know that we're still all going to be thinking of you and sending positive thoughts your way. So happy for you (I know that sounds weird. Obviously not happy that your cancer is back, but soooooo relieved is localized reocorrence!). Made my day!
Kathy
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So glad to hear the news Fighter. Go get em!
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Kymn--thank you for checking back in with us. Congrats on 3 yrs!!!! Terrific news
Cocker---waiting here with you love.
Mags
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Simplelife: When I saw my Onc in January, he told me that those who have a complete response to chemo they know they will do exceptionally well long-term, and then he said that those with even a partial response to chemo that they know those people will also do well. It sounds like this will be an excellent checkup for you! Congrats on how far you have come!
Cocker: Praying that this is something else unrelated to anything. Since it comes and goes, I'm thinking it will not be related to cancer but glad that you are getting it checked, because then you can return to not worry about it and have closure on the issue. I've read on here that some women had an itching at the point of a recurrence in the breast. My BS said a recurrence would look like a pencil eraser. Then I got to thinking ... what type of eraser? There are all sorts! Will be checking in to see what your results are - try not to analyze too much, but instead envision a happy phone call.
Kymm - Congrats on 3 years! If you log back in to say "hi", please tell us of any special things you have been doing for your health and nutrition post bc! It's nice to have a great model for us!
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Hi all
I need your prayers for a good PET scan scheduled for Wednesday. Only 6 wks out from 2nd bmx, and these damn tumors showed up again! This time they are between my breasts, over the sternum. 3 times in 18 months... unbelievable! I'm starting chemo again on Friday, gemzar and a platinum (carbo or cisplatin). I know these lumps will show as cancer as they presented the same way as my first recurrence, but I hope there are no distant mets.
I know you will all offer prayers and statements of hope, but as of now I am so exhausted from crying, I'm almost numb. Please, just say a prayer for me that God gives me a few more years so I can see my girls graduate from high school and college.
Lori
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Slowloris I am so sad that this has happened to you again. Praying that you are wrong and its not F... cancer again and that there are no distance mets. Sending lots of love and huge big hugs. Cancer sucks.
Mags/Inspired yep just a waiting game now. Really hate that part it, really seems to get to me as each day of waiting goes on.
So sorry to hear to hear about you ladies losing your beloved sisters. Must be so heartbreaking. There is nothing more lovely than having a wonderful sister in your life so it must be really really hard for you both. You will just have to adopt all of us. Hugs
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I don't know you Lori, but I am so sorry. Prayers coming your way.
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