reoccurence after 13 years

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jsh22
jsh22 Member Posts: 52
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I had a 9mm IDC tumor removed in June of 1996 at the age of 37.  I had a lumpectomy (no nodes were involved), followed by radiation treatment.  Just yesterday, now I am 50 years old, I was told that a biopsy I had last Friday on a small, 2x5mm lump had some cancer cells...same kind and same breast as original diagnosis 13 years ago.  They saw nothing on the mammogram I had in June or 1 week ago, but the ultrasound showed a small solid mass.  I had an MRI which also showed a suspicious mass and then and even smaller suspicious area elsewhere in breast, which they can't tell if is anything or not.  Now I have to decide about surgery and treatment...I don't know if I should just have the masectomy with reconstruction on the one side, or if I should just do both sides so the chances are less for a recurrence.  I never had chemo or hormone therapy, so I don't know if I need that after having a masectomy...does anyone know?  Is there anyone that has been or is in similar situation?

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  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Hi,

    Well, it is really something to discuss with an oncologist. The cancer that you have now would not recur in the other breast - in that case it would be a new primary. But, in general, once you have had breast cancer, the risk of developing a new tumor in the other breast is a little bit increased compared with women that have no history of breast cancer.

     Also, consider that you have had your first breast cancer at age 37. That is quite unusual, only about 5% of breast cancers develop under the age of 40. So, you may be at increased risk for genetic reasons. Women who develop breast cancer at a young age (or with a strong family history of breast, ovarian or prostate cancer) may have a genetic mutation in the socalled BRCA1 or BRCA2 gene. IF you would test positive for that, then that would be a very good reason to do a preventive mastectomy of the other breast. If you test negative, then you would still have a slightly higher risk because you have had breast cancer before.

    Consider having a good discussion with your oncologist about all this - and if you should get tested, perhaps so that you can have a better idea of what your risk really is - and then you can make your own decision based on what you feel would be best.

    Hope this helps,

    Helena.

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  • pitanga
    pitanga Member Posts: 596
    edited October 2009

    Jsh,

    So sorry to hear what you are going through. After so may years, finding out about a recurrence is a real sucker punch. I know because I was diagnosed with one earlier this year, after 9 years cancer-free, also on the same side, having had a lumpectomy the first time around.

    They said bilateral was an option and initially I considered it but ended up deciding just to do the affected side. In retrospect I feel it was the right decision for me. The local recurrence was minuscule, like yours, and it was growing at a snail's pace. And the "reconstructed" breast is not what I imagined it would be. It feels like I have a frigging tennis ball glued to my chest. Also, I turned out to have a metastasis, so at this point, a local recurrence is really small potatoes. Some oncologists dont even recommend mastectomy for women who are stage 4.

    Good luck making your decision. 

    Lisa 

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited October 2009

    I would want a full body scan before I made any decisions to make sure that there is no other recurrance sites.  Then you need to know if this is a new primary or a recurrance of the old breast cancer.  Just because it came back in the same breast, does not make it a recurrance of the old breast cancer.  Bottom line I would get scanned to see exactly where you are and start making decisions alll over again just like you did the first time. 

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  • kellyma33
    kellyma33 Member Posts: 7
    edited October 2009

    Hi jsh,

    My first BC was at the age of 33. I had NO high risk factors. Had a mastectomy and 9/18 nodes postive with the BC. 4 years late same side plueral effusion + for same (primary) BC. Now 14 years later two nodes on the same side have  cancer. W/o a biopsy don't know if it is the same primary cancer or an altogether new one. The location of the nodes are problematic to biopsy...etc. Note the cancer has not moved to the other side.Even w/o a breast my recurrences have both occured on the same side. Both the 1st and2nd time I had chemo, never radiation. I'd sugggest talking more with your oncologist about your dianosis, the particulars of your breast cancer, hormone recpetors, her2+ or not, etc. find out all you can about it before you make a decision. Find out all your options, etc. 

    I think a scanning the rest of your body would be good for two reasons; one-are there any other metastasiss and two it would be a baseline for future scans. (if of course you've not had full body scan before) 

    Good luck. I'l be thinking about you.

    Kelly

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  • jsh22
    jsh22 Member Posts: 52
    edited October 2009

    Thanx everyone for your input.  I had the BRCA1/2 test done and that was negative.  My surgeon presented my case to the tumor board and they recommended my biopsy get sent to another lab to make sure it was invasive and not DCIS.  It came back that it was still invasive.  They also suggested the sentinel node procedure to see if there were any lymph nodes left over from lumpectomy that they could take during surgery and biopsy afterwards.  This will help to see if there has been any spread.  They are considering this a new cancer and not a recurrence from previous cancer.  The surgeon and board feel that I should just have a mastectomy on the one side, because even though my risk is somewhat higher than the average person to develop on other side, it is not a high risk since there has never been anything suspicious on that side.  But that is my question...what exactly is that risk and do I get rid of that risk by having a double mastectomy?  My blood work and tumor markers  have all been normal and my chest x-ray was clear.  No time b4 surgery for a body scan since my surgery is this Thursday, but will be sure to do after, especially if they weren't able to find any lymph nodes to biopsy.  Does anyone know the risk of developing cancer in other, healthy breast?  If your tissue is unstable in the one and prone to cancer...is it unstable in the other one? 

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  • jsh22
    jsh22 Member Posts: 52
    edited October 2009

    Hi Everyone,

     Well, I made my decision and just had the mastectomy on the affected side, but now the problem is that they weren't able to find a lymph node to take out and biopsy.  Since I had a lumpectomy 13 years ago, my lymph system rerouted itself to the lymph nodes in the center of my chest and the nodes were under the sternum and not able to be taken out easily.  Now I have no way of knowing if the cancer has spread or not.  Any suggestions on what I can do to make sure of this?  By the way, my oncotypedx score came back as 7...does this mean I may not have to have chemo?  That would be so good because I just got my hair back from brain surgery that I had 2 years ago and didn't want to lose it again!  I know, that should be the least of my worries!

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  • AnneW
    AnneW Member Posts: 4,050
    edited October 2009

    Wow, jsh, you've been through a lot!

    I've had bc twice, too. One was IDC in the left breast. The other, more than 5 years later was ILC in the right breast. I had lumpectomy, rads, oopherectomy, and AIs the first time. The second time, I went stratight for the bilateral mastectomies and implants. Both were Stage 1, Grade 1, so I'm still a chemo virgin.

    With an OncoType of 7, I doubt anyone would be pushing chemo for you.

    I think the risk of contralateral breast cancer is .5-1% per year over the rest of your life. That's above the normal population. So yes, there is a risk of another bc, but not a huge one.

    These are never easy decisions to make. Best of luck.

    Anne

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  • jsh22
    jsh22 Member Posts: 52
    edited November 2009

    Anne,  what is an oopherectomy?  Never heard of that.  I am hoping to stay a chemo virgin too...I find out on Dec. 4th.  Without chemo, do you ever worry about a reoccurrence again?  Did you take Tamoxifen...thinking I will have to do that and don't know if there's side effects or not.  Thanx for info! -Janet

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  • pitanga
    pitanga Member Posts: 596
    edited November 2009

    Jsh,

    I am not familiar with the oncotype scores but from Anne´s reaction it sounds like that means it is growing very slowly?

    If that is the case, and since the tumor has the same characteristics as your last one, I wonder if it really is a new cancer or maybe the result of some isolated cells that were there first time around and grew slowly over the years?

    I had a local recurrence earlier this year, 9 years after finishing treatment (lumpectomy, chemo, rads). The new tumor was adjacent to the scar tissue from the lumpectomy and it had the exact same characteristics as the first one, except that the first one was growing quickly and this one was growing very slowly. It was tiny -- 7mm. The pathology report described it as "residual"-- i.e., leftover from the first cancer.

    As my case shows, even with chemo you cannot rule out recurrence. Unfortunately the treatments they have for us are grueling and far from perfect. 

    Oopherectomy is removal of the ovaries. They often suggest this when the tumor is estrogen-sensitive. 

    Tamoxifen has menopause-like side effects. Annoying but nothing compared to chemo.

    Best of luck in making your decision,

    Lisa 

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  • AnnieMc
    AnnieMc Member Posts: 17
    edited November 2009

    Hi Jsh,

    I am sorry that you had a local recurrence.  In April 2004, I had a stage 1a breast cancer that was mostly DCIS.  I had a lumpectomy, sentinel node biopsy, chemo (ER/PR/HER2 -) and radiation. In November 2005, I had a local recurrence of the DCIS in the same breast.  The surgeon attempted another sentinel node biopsy but nothing showed up.  The DCIS was considered residual cancer.  I decided to have a unilateral mastectomy with reconstruction.  

    It did bother me that I didn't know my node status the second time, but there was nothing I could do about it.  My oncologist said I would just have to let that go.  As it was, with my first sentinel node biopsy, one of the nodes that lit up was behind my sternum, so I never knew the status of that node.  That, the fact that my cancer was aggressive and my age (42) convinced me that I should have chemo even though it was tiny. 

    I hope things go well for you.  BTW, it has been 4 years since my recurrence and 5 since I have had invasive disease and I remain NED.  Last week, I ran my first full marathon. 

    Take care,

    Anne 

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited November 2009

    A pet/ct scan is the most likely thing to tell you if the BC has spread to those IM nodes.

    My positive IM node was detected by pet/ct scan. Inoperable because it was under the breastbone and right next to the aorta. 

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  • starr1995
    starr1995 Member Posts: 3
    edited December 2009

    I was also 13yrs. clean but the monster came back chest wall..Dr, was only able to remove 95% because it was wrapped around muscle and nerve..Been 1 yr. since 2nd surgery and I am terrified.Had masectomy and chemo first go round, this time, pill chemo, rad, and then drip chemo..It's been a tough road to travel, but I just keep sputtering right along..I know the worry will never end, but but not much we can do about that..Just make the best of each day and try to make tomorrow brighter if for no one else but yourself..Good luck to you all..

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  • jsh22
    jsh22 Member Posts: 52
    edited December 2009

    Well I had my appointment with the oncologist and he says I don't need chemo, just tamoxifen. Really glad about that.  Debating if I should also get a second opinion because he didn't recommend that I have any scans.  Has anyone ever gone to a Cancer Treatment of America where they have both conventional and alternative medicine?  Just wondering what your experience is there.  I just had my reconstructive surgery on Monday and now hopefully am on the mend and able to put this mostly behind me.  You all hang in there...this is not fun and games!!!

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  • annie1273
    annie1273 Member Posts: 6
    edited January 2010

    I was also just diagnosed after 13 years from my original diagnosis. At the original diagnosis I had a mastectomy(multi focal cancer) and chemo. this new diagnosis hit me very hard as my docs were not even concerned about what I "found" as they all thought it was scar tissue in the port site from my implant.  but it was invasive ductal carcinoma just as in May '96.  My onc immediately had me do scans which put me a bit more at peace as nothing else showed up.  But I was a bit unnerved when after removing the tumor the surgeon decided to go in and clean it up some more - just to be on the safe side.  He already had clean margins but wanted to do this anyway. When he did this- the path report revealed  what I think was called a fibrous strand of cancer cells.  Bottom line I am having radiation starting next week and then going on Arimidex for 5 years- if i can stand the side effects.  Does anyone know anything about this"strand" -- also any comments on Arimidex.  Thanks. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Annie, I don't know anything about a fribrous strand of cancer cells.  However, I was on Arimidex.  Everyone has different experiences.  I did just fine on it.  However, I'm sort of preaching to have your vitamin D levels checked.  You need the 25(OH)D.  Many women think if they get their D levels up that they may have less severe problems on the AIs. 

    I'm sorry you are going through this AGAIN.  It just sucks!

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  • Padiddle
    Padiddle Member Posts: 853
    edited January 2010

    Annie:  I'll be starting Arimidex this month too.  I am first having ooph Jan 14th.  Will also start Zometa.  When first diagnosed in 2000, I did mast, chemo and rd.  Came back w mets to bone Sept 2009.  Sorry we all have to go through this.  It is what it is.  Wish I could help you about the strands, but that is knew to me.  Let's see how we do on the Arimidex.  Best of wishes to you!  Jean

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Annie, sorry you are going through this again.  Can't comment on the 'strand' - hopefully someone will come along with info but wanted to invite your and jmarie over to the 'Arimidex' thread where you can read lots about what different users are going through.  But, understand that there are many, many more people on Arimidex who are not having any significant se's so they don't post.  You will get a sense of what some are going through.  For me, I've been on Arimidex since March (10 months) with minimal se's.

    My best to both of you.

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  • AussieSheila
    AussieSheila Member Posts: 647
    edited January 2010

    Just may be that the 'strand' could be ILC, aka Invasive Lobular Cancer. ILC is also known to be hard to find on some scans and if the Dr thought it was scar tissue he wouldn't order a scan of any type, I would imagine.

    Sheila

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