Possible New Primary/Second Time Around

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Whovian05
Whovian05 Member Posts: 46
edited June 2014 in Second or Third Breast Cancer

I was diagnosed at age 33 in 2003 with Invasive Ductal Carcinoma in the left breast. It was grade 3. I had 17 lymph nodes removed and three came back positive. The cancer was highly er+ and moderately pr+. I had a lumpectomy with four rounds of taxotere and adriamycin, followed by radiation and tamoxifen. I had a baby, my only child, at age 40. I'm 43 now and my most recent mammogram shows a "suspicious finding-microcalcifications of about 4mm in a different area of the same breast. I had more mammograms which show the same microcalcifications. My regular oncologist has been out of the office, so I just got off the phone with one of her colleagues. He said he could not say it was a new primary for certain, so I will need a biopsy. From the way he sounded on the phone and judging from the grim look on the mammography technician's face, it looks like a new cancer. What a great way to start the new year, eh? I guess I'm looking at a mastectomy w/reconstruction, and possibly more chemotherapy, scans, and the whole load of crapola I had to deal with nearly a decade ago. I still remember how sick and miserable I was on chemo and how bad the rads burned my chest. Considering I walked around with the first cancerous tumor for over a year before it was diagnosed (doctor kept insisting it was a cyst!) I should consider myself lucky to have had ten years, right? I guess my number is finally up. I kept wondering when it was going to be my turn-my mother died of breast cancer at age 45, my sister died at 37 during heart surgery for a congential heart defect, I just had a 46 year old cousin die of metatstatic cervical cancer back in September. Maybe it's good for me to die sooner than later, that way my two and a half year old daughter won't remember me. Can't miss what you don't remember, right? What's ironic about all this is my onc was going to bump me up to once a year check ups come 2013. It just figures this happens, right? To be honest, I don't really want to go through the hell that is cancer treatment again. I was sicker during treatment than I ever was during pregnancy. I'd rather be pregnant again than have this!!!

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  • rozem
    rozem Member Posts: 1,375
    edited December 2012

    who - i'm sorry no one has replyed yet.  I don't have any personal experience but from what i have read/researched it sounds to me like you have a new primary (and this isn't even confirmed yet).  If this is the case the prognosis would be the same as any new BC - and since it sounds like it is very very early stage -that prognosis is excellent.  You also went 10yrs without a recurrance/new BC so this is also great.  Based on what your biopsy results and final pathology find you may not even need any further treatment other than surgery and tamox or an AI again.  You got through it the first time and you will get through this aswell and be here for your daughter...hang in there


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  • tlew
    tlew Member Posts: 128
    edited December 2012

    Whovian, I'm so sorry you have to go thru this waiting phase. But You did not get your results back yet. It may not be as bad as you think. I know it's so hard to stay positive just thinking there's a chance you might have to do it all over again. Bc really sucks. I was diagnosed at 36 and felt the cancer robbed me of my chances of getting pregnant again. I walk around everyday wondering when I will have a recurrence. Its so unfair but we all have to stay strong. I have a 4 year old boy that I'm totally in love with and who I live for. I will do all I can to stay healthy and alive for him and I hope you do the same for your baby. Good luck and keep us posted.

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  • Whovian05
    Whovian05 Member Posts: 46
    edited December 2012

    I know I shouldn't totally freak out until the biopsy results come back, but it's so hard. I was out today trying to finish Christmas gift shopping and I walked past the Build A Bear store. I want to live long enough to take my daughter to that store. I thought of all the places I wanted us to go together, but this leaves me wondering if there's no point in having any more hopes or dreams if I have a new cancer.

    I have an appointment with my oncologist on thursday, 12/6. I guess they'll schedule a biopsy at this appointment. I know I could do an AI, but I'm not officially in menopause, more like peri-menopause. I'm still having menstrual cycles, but they are not regular anymore. I'm not relishing the idea of having a hysterectomy or lupron to shut down my ovaries. I've done lupron before and the hot flashes are horrid, not to mention the insomnia.

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  • rainalee54
    rainalee54 Member Posts: 3
    edited December 2012

    I have just received my third PRIMARY breast cancer diagnosis. The last was eight years ago so I have had a good run, the first was 10 years ago. The docs have suggested a double mastectomy with a reconstruction. Not sure if thats the path I want to follow. My own oncologist suggested to just get rid of the lump and go from there which is the path I am going to follow. The docs reasoning is that if I were to get secondaries they would be more likely to recur in my breast which to me seems like a good thing! I would hate to get one in another sneakier organ. I had a hysterectomy as a precautionary measure a few years ago so at least I don't have to worry about those bits!! My question is is it better to remove the breasts thus limiting the chance of another breast cancer, secondary or primary, and is a reconstuction a good idea as it makes for more difficult detection? 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Whovian, and Rain..

    How are you both going?

    i just discovered this thread.

    Rain, we have a lot in common, except tht I had a double mast. 1st up.

    i hope you are ok? You can definitely find new primaries after reco.

    Who...I hope it was a false alarm for you.

    if not..you will get through it!

    hugs to you both.

    xx

    Astrid.

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  • patti3796
    patti3796 Member Posts: 79
    edited December 2012

    I just finished treatment for my second primary  this time in the other breast.   It sucks to go through it all again.    But my doctor told me we beat it last time and we will beat it again.    It was just the words I needed to hear...to battle the cancer.   

    Rain...my RO and surgeon felt that a lumpectomy was all that was needed.   I am large breasted and the cancer was less than 5mm.    The Breast Care Coordinator was recommending a double mx.   Don't you hate it when they give you different opinions.    I ended going with the lumpectomy as since it was the other breast I could then have radiation.   

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  • SharonS
    SharonS Member Posts: 326
    edited December 2012

    Some good stuff on this thread.  This is my second time.  First time right side - lumpectomy and axillary dissection, this time left.  Had bmx and tissue expanders on 20 Nov.  Was rethinking the whole tissue expander and reconstruction anyway, and then yesterday I find out my oncotype was 21.  Astrid, I see you had the bmx but waited for the reconstruction.  I am wondering about the reconstruction fills while doing chemo with lowered immunity, etc.  Anyone done that and have advice?

    Peace to all today

    SS

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  • Whovian05
    Whovian05 Member Posts: 46
    edited December 2012

    Well, I got the stereotactic biopsy results and from what I've interpreted, they aren't great. The report states the microcalcs are atypical ductal hyperplasia, that border on ductal carcinoma in situ. So, the oncologist says technically the microcalcs are not cancer. But, from what I've researched, it's only a matter of time before I get breast cancer again in this breast, or cancer is already there. She wants me to have a breast mri next week.

    I just don't have the time for cancer right now. I have a big, strong-willed toddler who makes everything-diaper changes (she had no interest in potty training at all), baths, getting in her car seat-a battle of wills that just exhaust me. All our family live out of state, well the ones that aren't already dead, that is. I don't have parents, my only sibling is deceased, and my husband's family live in the pacific northwest. His father is still living, but pushing eighty and his health is not that great. Onc wanted to discuss getting a mastectomy. How am I supposed to deal with recovering from mast/reconstruction with no family, no support and a child in the terrible two's which will probably go into the terrible three's???? On top of that, my husband has to travel a lot for his job. At a moment's notice he could be on a plane to meet a client half way across the country-or another country!

    Maybe I should just accept I won't be living to see my daughter start kindergarten (she'll probably won't be allowed, as I'm sure she'll still be in diapers.) let alone living to see fifty years old. Maybe my husband is better off without me. He can find some hot young thing with two good boobs that aren't ticking time bombs and move on with his life.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Who!!! C'mon now, it's gonna be alright.

    here's a great big cyber hug for ya.

    It's so understandable, you're being discouraged and frightened right now, but you take it a step at a time. You can do whatever you need to. Small steps.

    Maybe look at getting an inlaw visit for a few weeks, or you deliver the young one to them...or maybe look at in home help..or contacts through your maternal care group?? local council, and breast cancer orgs...see what's available, then do whatever you need to, to stay alive, and see your beautiful bably become a regular loving young human being...which they will, very soon!! :-). You are gonna be ok. Deep breaths my girl.

    I don't live in the US so I hope those with local knowledge will help you with the practical matters. it does sound like a mastectomy might be a good idea.

    hang in there Who!

    we are all with you.

    xx

    Astrid.

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  • Whovian05
    Whovian05 Member Posts: 46
    edited December 2012

    Another thing that scares me are the surgeries themselves. My sister died during heart valve replacement surgery. She went into cardiac arrest right after the surgery and they opened her back up again to try to save her, but she died on the operating table. She never woke up. I'm so scared I'll go under anesthesia and meet my end right there, just like she did.

    I only wish I had a maternal care group or some kind of support group to help me out, but there isn't one. I have friends at church, but they are very busy with their own jobs and children. One friend is a nurse, but she is a single parent and pretty much overbooked with long work hours and caring for active twin girls. My husband will be able to take time off under the Family Medical Leave Act, but his boss will probably let him do a certain amount of work from home and work with him as much as possible. His work is more global in nature (works in mining industry) so he can't get out of traveling for too long. I was so hoping I'd be able to go along with him to places like the U.K. and Australia, but I guess that won't be happening either. Not only has this ruined my Christmas, it's ruined my dreams too. I'm just really depressed right now.

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  • tcam3472
    tcam3472 Member Posts: 22
    edited December 2012

    Your going through a lot right now..certainly more then anyone should.  I can relate about the fear of the surgery.  I "beat" cancer in 2010 (mascectomy) now I have ADH in the other breast.  I have decided to now remove the other breast all together rather then go for more surgery to determine if theres cancer.  I'm not taking any chances.  I also am afraid of surgery.  I was never afraid before...had more then my share but the last surgery TRAM was brutal.  The only advice I can give is to put one foot in front of the other (as I'm trying to do) and to not think too far in advance.  Tell your doctor your concerns.

    Couples should always be with each other through thick and thin.  Think about it..would you leave him if he got sick?  YOU deserve him to be there for you as well.  Chin up...you can do this.  Think of the better days ahead after you beat this

      I'm so very sorry to hear of your sister.  Life can be so damn hard.  I'm going to try Meditating to ease my stress ( I'm off work 4 weeks before the operation-uggghh wish I was stronger)  Maybe mediating would help you too...?  I'll be thinking of you and sending prayers

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  • rozem
    rozem Member Posts: 1,375
    edited December 2012

    who...sounds like everything is very early ADH and DCIS this is great news.  As for taking care of your toddler with a mastectomy you could always do a mast without reconstruction as healing would be much faster.  With reconstruction some women breeze through the process while others (like me) have a tough time with pain, healing etc.  You could have delayed reconstruction when your toddler gets a little older, I know they always require lots of attention (i have 2 kids and i remember those days well) but it does get easier as they get older (school age is great!).  I know this is not ideal as most want reconstruction done right away but it may be a option due to your circumstances

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited December 2012

    Who....honey, you are more than a little depressed. Can I say that you may live to be 50...60...70...? Its not terribly uncommon for cancer to come back/appear several times. We just do what we have to do...one step at a time. For your baby girl, she will adjust and you will help her learn so you don't hurt yourself...and, Do you have a counselor? Get with the social worker at the hospital to see if there are any "helpers" around your area to assist with cleaning, child care, etc. Im guessing your hubby is more concerned about your health than any pair of boobies....when you get to the reconstruction part, you can both decide on what you want. Cancer sucks so bad...im impressed how expressive and open you are. I want to grab you by the face and kiss your forehead...and tell you to get to getting this show on the road. Somehow, it works out...I wish you the very best.

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  • bluepearl
    bluepearl Member Posts: 961
    edited December 2012

    Whovian05...you are very depressed and one of the symptoms is the cyclical negative thinking. You need to see a doctor about this. It will not get better on its own because the negative thoughts feed themselves. When I went on a low dose of citalopram, once they kicked in, every negative thought burst like a bubble before it went any further. You might be able to get support through a breast cancer support group too. Your cancer thus far is curable and I hear you about pain. I had a mastectomy and post mastectomy pain as well. Had to get my 93 year old Dad to a cancer clinic from a cancer lodge, wheel chair, rain, slush and he was so very sick. It took a toll on my arm pain but I managed. You might have to take a mild dose of ativan if you go for an antidepressant to get you over the hump, but I think you have other issues that need to be addressed as well as your second pre-cancerous condition and I do hope you discuss this with a doctor. As one who contemplated ending it all, I KNOW that negative thinking can lead you down a very serious road. Please seek help. It is almost more serious than your breast condition...and your little one will pick up on your sadness and maybe even "act out" making it worse for you. Voltaire said that life is a shipwreck but it must not stop us from singing in the lifeboat.....I am hoping you find your song soon! ((((hugs))))

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  • Karen3
    Karen3 Member Posts: 307
    edited January 2013

    Hi Whovian05

    Hope you are feeling a bit better. I have just found this thread and the advice here is superb. I have had another bout of BC but it was found eary thank goodness. I am now a year out of my bilateral mastectomy and doing just fine and there is NO REASON to suppose you will not be fine too. I agree - it sounds as if you are depressed and believe me, that's understandable and we have all been there. This will pass and you will be able to realise those dreams you have. Just hang in there. 

    All the best to you!

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  • BirdyRobin
    BirdyRobin Member Posts: 105
    edited January 2013

    I need to ask a question. Is a second local bc stage 4?

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  • sheryl59
    sheryl59 Member Posts: 2
    edited January 2013

    A second local bc is not considered stage 4 unless that 2nd local has metasticized to the appropriate locations that would make it stage 4 *worthy*. On my 2nd go round, it was condidered a 'new primary' (not a met from the first go round). It was staged at 1 mostly because 1) its teeny size and 2) no lymph node involvement. I had radiation the first time and a bilateral mx the 2nd time. Hoping there won't be a third time!

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