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Long term survivor examples.

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  • MomMom
    MomMom Member Posts: 334
    edited May 2014

    Jan69,  I didn't think anyone was too old to be tested for BRAC.  If you don't mind my asking, why was that?  Even though I'm 67, it was important for me to be tested as it would have changed my treatment had I tested positive.  Just wondering.  More importantly though, I have a daughter and 5 of my 7 grandchildren are granddaughters.  I wanted to know for them.

  • shorfi
    shorfi Member Posts: 437
    edited May 2014

    waiting for biopsy results. Found a lump and praying its fat necrosis. Will see PS on Thursday for results. Hope is nothing!

  • megomendy
    megomendy Member Posts: 63
    edited May 2014

    Ozzygirl, thanks for posting for us. I love your motto about not waiting for the Cancer shoe to drop.

  • placid44
    placid44 Member Posts: 179
    edited May 2014

    I think insurance may not pay for BRAC testing after age 45. I was 44 at diagnosis.

  • jarris77
    jarris77 Member Posts: 14
    edited May 2014


    I don't know about all insurances but was 56 at diagnosis (last year) and my insurance paid for my BRCA testing.

  • MomMom
    MomMom Member Posts: 334
    edited May 2014

    Insurance differs but paid for mine at age 66.  If you are triple neg BRAC + or - can make the difference between lumpectomy or mastectomy.

  • StefS
    StefS Member Posts: 17
    edited June 2014

    I'm one of those ten that is not on here much anymore. I'm approaching my 10 year anniversary of finishing treatment and after that my 11 year anniversary of hearing the surgeon tell me, "You have cancer, but we don't know what kind."

    I was Stage 3c, triple negative with all 21 nodes involved, including several all matted together. There is hope!!!

    I do not have either of the BRCA genes. And with the US Health care act/Obamacare, the testing is covered, at least according to the main company doing it. I did the test years ago.

  • simplelife4real
    simplelife4real Member Posts: 341
    edited June 2014

    StelS....THANK YOU for posting.  As someone with TNBC stage 2b and did not get a pCR, I needed to see your post!!

  • Lettinggo
    Lettinggo Member Posts: 18
    edited June 2014

    StefS, yes, thank you for posting. We all need to hear survivor examples like yours. take good care!

    Simplelife4: Sorry to hear about the PCR situation...  Did they recommend radiation because you did not get a PCR or just because you had a lumpectomy?  I am sure you will be fine... Sending love and prayer to all you ladies and survivors- yes we can do it. We can kick cancer's ass regardless.  

  • simplelife4real
    simplelife4real Member Posts: 341
    edited June 2014

    Lettingo, I would have had rads with either an MX or LX because I was clinically node positive (confirmed by a biopsy of the node) at the time of my initial diagnosis.  Also, the neoadjuvant therapy got rid of all the detectable cancer in my breast, but I was still had a small amount of cancer in two nodes after chemo...so no matter what kind of surgery I had, I still would have needed rads.

  • KSteve
    KSteve Member Posts: 190
    edited June 2014

    Lettinggo - FYI - I had a complete pathological response at the time of BMX, but I also had radiation after surgery due to being TN.  I think different ONC's have different treatment plans.  Having rads wasn't ever even a choice for me (although I know the choice always belongs to the patient).  My treatment plan from day 1 was neoadjuvant chemo, bilateral mastectomy, then rads 

    I know I'm not probably considered long-term yet, but I am approaching 4 years since diagnosis at the end of this summer.  Life is good :)

    Kathy

  • nastazia_s
    nastazia_s Member Posts: 5
    edited June 2014

    Hi , i'm almost 5 years since diagnosis and i will have my follow up tests!

    Do you get scans and mri for the first 5 years?

    What kind of tests for the first 5 years when 10 lymph nodes are involved and what kind of test after the 5 years?

    I'm worrying for the radiation due to scans.

    Do you have scans and mri or just a mammo with ultrasound, chest x-ray and blood tests?

  • made2b2gether
    made2b2gether Member Posts: 3
    edited June 2014

    Hi all. My wife is still undergoing treatment and has only finished taxol thus far (12 weekly).  The shrinkage of the tumor was minimal at only 3-4mm (from originally 2cm) and now we're hoping that the 4 cycles of FEC will do a better job.  There appears to be no spread to the lymph nodes but we'll know more after surgery (which will be in mid- to end August). 

    As you can see from our profile, my wife was dx in January 2014 with stage 1 or Stage 2A based on MRI, Ultrasound, CT, RI (bone) Scan etc.  Both BRCA 1, 2 and MLPA tests were negative for deletions / mutations. 

    Getting a pCR seems to be very important and having any residual cancer is a big no no (from all the published literature and from reports). 

    I am looking for some success stories. StefS, your story is surely positive and gives us hope.  Simplelife4real i"ve followed yoru threads for a while now and you've helped a ton along the way also.

    Just hoping the now treatment gets us better results (pCR wise).  Any positive stories of hope will surely help.  We are still in treatment so we'll only know more after the final surgery and path report (plus we have 2 more dense dose infusions of FEC left).

    For those that went with neoadjuvant chemo, and did not get a pCR, or had some residual disease, what steps did you take diet wise or treatment wise (As i understand it, no further treatment is usually done and you're just followed up on, unless of course you qualify for a clinical trial). 

    Any positive stories will surely help us find hope.

    d

  • Ozzygirl
    Ozzygirl Member Posts: 5
    edited June 2014

    I cannot talk to the pCR as they did not do those back when I was diagnosed. I also did not do neoadj chemo as that had not started yet either. I did surgery and then ACT and no radiation with a 2.5 cm tumor at surgery time.  After the chemo no additional treatment as there is not much for TNBC. No positive nodes but am positive for BRCA1

    That being said I am still here 12 years later and still at NED.  My best to you and your wife and hope the FEC helps. 

    There are lots of us out there just that lots of people don't post here as often when done.

  • made2b2gether
    made2b2gether Member Posts: 3
    edited June 2014


    Thanks Ozzygirl. Yes, we too hope the remaining chemo helps and then i guess we'll see where we can take it from there. We were told that the key is to complete the treatment as per plan. We have a few more 2-3 more months to go.

  • Luah
    Luah Member Posts: 626
    edited June 2014

    made2: I have known some women on these boards whose tumour responded very well to taxol, and others who responded very well to the FEC/AC regimen.  So try and hang in there to see how it goes next few weeks.  From what I've read, achieving a pCR is a highly reliable prognosticator for disease free survival, but again there are many women on these boards who did not get that pCR and are doing very well. Hopefully some will be along shortly.  Some women have been given additional/different chemo following surgery.  That's something to discuss with your wife's onc once her FEC is complete and you see the final response.  

  • simplelife4real
    simplelife4real Member Posts: 341
    edited June 2014

    I went to a wedding over the weekend.  While I was there, I noticed a woman wearing an LE sleeve, so I went up and introduced myself to her. Turns out she had TNBC stage 2b (just like me)!  She has just recently passed the 5 year make with out a recurrence of her TNBC.  It was wonderful to meet her.  I asked if she was active on this site, but she isn't.  I told her about this thread and the good LE threads on this site.  Hopefully, if she decides to become active here, she will post on this thread.  

    Just love meeting ladies that have passed the 5 year mark with TNBC without a recurrence!!!

  • megomendy
    megomendy Member Posts: 63
    edited June 2014

    Simplelife4, that's great that you went up to talk to her. And we all love to hear those success stories.

  • made2b2gether
    made2b2gether Member Posts: 3
    edited June 2014


    Luah, thanks for the optimistic spin on things and you are absolutely right. Each treatment is individual and completing the current line of treatment and then monitoring it to further deal with it is surely the best approach.  We've got some ways to go so we'll go at it strong.  You stay well also. Appreciate you wrting. Please stay well :)

  • Lettinggo
    Lettinggo Member Posts: 18
    edited June 2014

    Simplelife4, thanks for the response. I had no sentinel node biopsy before chemo at the initial diagnosis so now the entire medical team is left wondering if my nodes are involved and that if i will need radiation especially since the tumor is not detectable on the ultrasound.  So now my surgeon wants to leave the positive nodes in there if there are any and just add radiation.  After reading the posts on this site, i feel that radiation may be another good weapon to use again the TNBC so I do not mind that much any more. but my question for everyone is : does anyone out there have the same experience where their surgeon did not take the positive nodes out but just added radiation and expecting the radiation to take care of it? Thank. 

  • Lettinggo
    Lettinggo Member Posts: 18
    edited June 2014

    Ksteve, thanks for responding.  Is it because your lymph nodes were involved?  So even if you have a PCR you can still have lymph nodes involvement? how can that be?  This is all a lot to chew and digest on.... thanks again

  • Lettinggo
    Lettinggo Member Posts: 18
    edited June 2014

    Placid44, can you please tell me why you had radiation? I was going to the 06/14 lunch but could not last minute due to fatigue - am now done with chemo.   But Dr Wilkinson my oncologist will not make a recommendation and since I did not have a sentinel node biopsy done at the initial diagnosis, it is all guesswork for the medical team and me regarding whether my lymph nodes are involved.  Dr Vargas and Dr Edmiston have the position that if nodes are involved they will not take them out instead they add Rads, while Dr Cocilovo and Dr Akbari will take out some nodes and then add radiation.  Did you have any more nodes removed other than the sentinel nodes and then had rads too?  I know your surgeon was Dr Cocilovo.  I don't know why different surgeons have different practices on this issue.

    btw, I am 44 at diagnosis as well.  would you share who was your radiation oncologist?

    Thank you, hope to meet you at the next lunch.

  • Lettinggo
    Lettinggo Member Posts: 18
    edited June 2014

    Ozzygirl, thank you for sharing. one question for you: how do you know your tumor grew from 0 to 2.5cm in 3 weeks? Is that possible?  I thought even the fastest growing cancer takes 2-3 years.  but I doubted mine was during the time i was in another country which is about 5 weeks (from 0 to 2.5) as i had just had a physical with my gynocologist and honestly self examined myself almost everyday until that fateful day in Dec 2013.  So this is all very interesting.  Thank you very much

  • Ozzygirl
    Ozzygirl Member Posts: 5
    edited June 2014

    Lettingo,

    Yes, people say that all the time....there is no way it grew that quick yadda yadda but it did, I have even argued with doctors about it. But when they see the dates of the doctors notes on my reports/mammos path etc they soon stop questioning it.

    I first found the bump in the shower, it was tiny and was almost like a blind zit. That's what I thought it was because it was tender. Wasn't even doing a BSE. I  just felt it when washing. I know the day as it was my last day in another country on a business trip before returning to the states. 

    I had a previously scheduled obgyn appt for birth control one week later - by this time it was the size of a small marble and I was still thinking blind zit boil etc. No redness or anything like that. She ordered a mammo and US to rule out a blocked duct. 

    Nothing on mammo, too dense. It was seen on US but they told me it was just a cyst. "Nice and round and not cancer, no bad edges etc; You are too young blah blah" Thankfully the head radiologist happened to walk in to talk to the radiologist that was doing my US and reviewed the US with him and  she said cysts grow quickly but lets just do a biopsy just in case.

    Obgyn appt on Monday. 

    Mammo and US the next day (They had a last minute cancellation and If I could come in that afternoon then they could see me otherwise it would be a 3 week wait) 

    Biopsy on Wednesday afternoon and my obgyn called me Friday morning with the cancer result. (Never did get those dam birth control pills :P )  

    Mast 10 days later.

    Total time from finding the zit sized bump to mast was 25 days. Final path 2.5 cms. The good thing about fast growing tumors is that they react well to chemo as evidenced by the success-fulness of  doing chemo before surgery now.

    I was very lucky in that all the pieces just happened to fall into place for a very quick diagnosis and surgery.  My insurance company was also very responsive with authorizations and I had really good coverage. 

    I know that generally most cancers take time to grow and I have no idea what sparked mine to go into turbo mode but I know I am not the only one.

  • Lettinggo
    Lettinggo Member Posts: 18
    edited June 2014

    Ozzygirl, thank you for the response. I suspected mine was like that too.  What was your ki67 mine was >90.

  • KSteve
    KSteve Member Posts: 190
    edited June 2014

    Lettinggo - I know I had lymph node involvement from day 1 due to biopsy and petscan results.  Since I had surgery after chemo, the surgeon still removed 15 lymph nodes, as well as all breast tissue.  There was no evidence of cancer in anything that was removed from my body.  But because I had such a large tumor and involved lymph nodes when diagnosed, they planned for me to have radiation.  Glad I did.  I feel like I did everything possible to get this beast out of my body.

    Good luck to you,

    Kathy

  • Ozzygirl
    Ozzygirl Member Posts: 5
    edited June 2014

    Lettinggo,

    I did not have the ki67 test when I was diagnosed as it was not used for BC back when I was diagnosed.  I was staged at grade three as it was poorly differentiated throughout.

    There have been a lot of changes over the years with the  new tests and changes in how things are staged and best of all....with all the new options and medications.

    I don/t think it would have made any difference in the treatment for me because based on age and speed of growth etc my oncologist threw everything he had at it but it would have been interesting to know.

  • lintrollerderby
    lintrollerderby Member Posts: 70
    edited June 2014

    Lettinggo said: "I thought even the fastest growing cancer takes 2-3 years."

    Lots of people (physicians included) and medical literature talk about breast cancer taking years to develop. The most commonly stated figure is in the 6-10 year range. The problem with that range is it doesn't apply to all breast cancers. It tends to apply to the "traditional" subset of breast cancer--hormone receptor positive, HER2 negative, grade 1, and in a post-menopausal patient. In other words, a Luminal A cancer in the patient population that is most often diagnosed with the disease. Then, those figures get thrown around and applied to all breast cancers. Those of us with Triple Negative who were very young at diagnosis tend to dispute the close-to-a-decade number that we are given. I know that both my surgeon and I saw the difference in the tumor over a 5 week period. It went from difficult to locate with my hand, to visible as it pushed against the skin. And the growth was apparent with the naked eye as the weeks progressed. My MO and the next surgeon (who is a surgical oncologist and only does breast cancer surgery at an NCI CCC) said that our subset of breast cancer is different. Many of us go from 0 to palpable tumor in a very short period of time. They informed me that my tumor was only a few months old. 

    I've since found studies looking at tumor doubling time in breast cancer. The often cited numbers are from 150-260 days and these tend to apply to the Luminal A, post-menopausal patients I mentioned above. For young TNBC patients, and some studies looked closer at those with BRCA1 mutations who have TNBC and basal-like characteristics (which I fit all 3), the mean tumor doubling time is around 45 days. And 45 days was the mean time. I have seen studies that individual patients had tumor doubling times as short as 28 days. 

    All this to say that there really does seem to be something to how many of us feel that these breast tumors came from nowhere. We already know that breast cancer is not one disease, but many; the descriptions of how long it takes to develop varies by a multitude of factors.

  • Gorilla12
    Gorilla12 Member Posts: 12
    edited July 2014

    It is over 10 years for me. I was triple negative, stage 1, had chemo and radiation. I am ALIVE and going strong! I have remarried (4 yrs) to a sweetheart of a man, saw my 20 yr. old son just graduate Marines boot camp and my daughter get her Master's degree in Library Science. When I was diagnosed I thought I was going to die, but I didn't!!

    Please have hope......

  • placid44
    placid44 Member Posts: 179
    edited July 2014

    Lettinggo,

    Sorry, just saw your question. I had radiation because I only had 4 nodes removed. One was positive (the closest sentinel node) and three were negative. At the time of the SNB, they thought I was node negative, but the pathology afterward showed 6 mm of cancer in my sentinel node. 

    Since recs are moving in the direction of not doing a full axillary dissection for women with only one positive node, we decided not to do a full axillary when I had my BMX (i did chemo first) but rather to do radiation. That was the rec of the tumor bd, dr. Cocilovo, dr. W, and what i was most comfortable with. The rads hit the breast and the nodes. I generally tend to decide on more aggressive treatment options. My only not-as-aggressive decision was no axillary, but I did have rads.

    My rad onc is dr. Jane Grayson at inova Alexandria hospital and I really like her, clinically and personally.

    I did not get a pcr, but tumor shrunk 77%, from 3.1 cm. to 7 mm. That will have to be good enough, although I was very disappointed/scared by that result.

    I hope to see you at the next lunch!