please tell me what you would do!

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jpmercy
jpmercy Member Posts: 189
edited June 2014 in HER2+ (Positive) Breast Cancer

hi everyone! i need help with this one, i am 30 years old have an 8 month old baby was dx with DCIS in July, my mom and grandmother both had BC mom is a 23 yr survivor dx at 38  my grandma died of BC dx at 64 BRCA negative. anyway, had BMX due to family hx. after pathology showed DCIS with a 2mm invasive tumor grade three HER2 3+. my onc originally said chemo 4x and herceptin one year. but he was not 100% bc of hte size but felt he should treat the pathology. he sent me for second opinion at major cancer center they say dont treat. but they are from the phylosophy that size matters my onc is on phylosophy that pathology matters. to make it more difficult i would like more children which is very very important to me. is the chemo and herceptin over treatment? and im doing something that i really dont need and then end up not having children because of? or do i throw everything i can at this now be sure i did everything be thankful i will have a good prognosis and wait and see if i can convieve later? saving eggs is not something i am comfortable with. my onc feels it truely is my decision bc i am in a very grey area and the medical field really doesnt know how to treat me.....so the million dollar question is will it return without treatment bc it was so aggressive OR should i relax bc it was so small? please weigh in on this what would you do?????

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    That's a tough decision. One thing that I would think all your oncologists should also consider is your family history. With your history and HER2+++ I'm not sure I'd be willing to pass on chemo… but I don't have kids so I might not be the best person to ask. I just think if it were me and I already had 1 child (infant) I would want to do everything to be sure I'm around for a long time.

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  • jpmercy
    jpmercy Member Posts: 189
    edited October 2010

    Thanks Lago!

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  • blondie45
    blondie45 Member Posts: 580
    edited October 2010

    Yes I would treat being Her 2+ on top of the bc family history. I thought everyone that was Her2 + was told they needed treatment but maybe I am mistaken. I would express to your doctor your concern about wanting to make sure you can have more children.

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  • NonniO
    NonniO Member Posts: 31
    edited October 2010

    I have to agree with Iago & Blondie45 on this one.  Without being a medical professional, my gut tells me to do the chemo so that you won't have any regrets later.  I'm not really qualified to comment on your chances of conceiving after chemo - maybe someone else here can advise you on that.  I know that I've read that some women go into chemo-pause and then have their periods return.  Whether or not that means that it's safe for you to conceive again - that I don't know.  My feeling is, take care of yourself first, then, God willing, you can add to your family when you're well again. Adoption is another option, too.

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  • Twinmom77
    Twinmom77 Member Posts: 303
    edited October 2010

    It's a tough decision, no doubt about it.  I kinda wouldn't mess around with grade 3, Her2+, and a family history, I'd probably do chemo and definitely Herceptin.  I can tell you from my experience, I missed two periods and then they were back like clockwork, so chemo doesn't shut down the ovaries in everyone.   Good luck with deciding, I know it hard and you wish you could just have someone tell you exactly what to do and exactly what the end result will be.  You just gotta go with your gut.

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2010

    At this point, your family history is irrelevant.  You may have gotten breast cancer in the first place because of genetics, because of the family history, but now that you have it, what's important is treating the cancer that you have.  Your family history may impact whether or not you get this disease, but it won't impact the progression of this disease.  If it's caught early and treated properly, you should do well, regardless of whatever family history you may have.  If it's not caught early and/or not treated properly, it may progress.  Family history doesn't matter when it comes to treating a cancer that already exists.

    So then, what's the right treatment for your cancer?  HER2+++ is serious, but a 2mm tumor is very small.  Currently the NCCN treatment guidelines (the guidelines used by most doctors in the U.S.) suggest that chemo and Herceptin only be given for HER2+++ tumors that are greater than 5mm in size.  Because of the serious potential of HER2+++ cancers, some oncologists choose to recommend chemo and Herceptin for tumors that are somewhat smaller, but honestly, I don't think there are many who would recommend it for a tumor that is only 2mm in size.

    This doesn't mean that I don't think you should have those treatments - I'm just giving you the facts about the treatment guidelines.  You can read them yourself on this website: http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf  You may have to register to be able to view the file, but it's worth it.  These are the treatment guidelines used by physicians.  You can follow your diagnosis through on pages 9 (Stage I), 11 (mastectomy, node negative), 12 ( ER+/PR+, HER2+) and 13 (no chemo/Herceptin for those who have tumors that are 5mm or smaller in size if they are node negative).

    As for what you should do, I can't tell you that. My advice is to talk to your oncologist and to the doctors at the cancer center to find out what they say your risk of distant recurrence (i.e. mets) is without chemo and Herceptin, and what it is if you have chemo and Herceptin.  I have no idea what your risk would be without these treatments, and how much these treatments will reduce your risk.  That's what you need to find out to determine if these treatments are worth it for you.  Also find out what the chances are that this will impact your fertility.  Then decide for yourself what's right for you.  No one can - or should - attempt to make this decision for you.  There's just too much at stake, either way.

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  • jpmercy
    jpmercy Member Posts: 189
    edited October 2010

    thank you everyone for taking the time to give me your thoughts, ultimately it is my choice just a hard one but you all bring up valid points that truly help me gather my thoughts and ultimately come to a decision!

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  • theresap60
    theresap60 Member Posts: 947
    edited October 2010

    Yep, I'll put my 2 cents in.  I would go for the chemo for you and your little guy and the rest of your loved ones.  Mine was under 2 cm, hormone positive, clear nodes but my onc insisted I have chemo ... didn't even do the onco-type test on me.  With my family history, my age (I'm a lot older than you!!), he wanted me around another 20-30 years.  You have many more years than that going for you.  Cancer is evil and will raise its ugly head again and there's no telling how bad it could come back.  I hated having chemo, but when I was doing it, an elderly gent came in for his chemo and told me about his wife who had BC.  She didn't have the option of having chemo.  The cancer came back worse the second time and ended up killing her.  I was glad that I was playing it "safe" and aggressive.  Good luck with you decision and God bless.

    -Theresa

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2010

    Check out lifemath.net and newadjuvant.com and plug in your statistics and see.  It does appear that tumor size makes a huge difference in outcome, whether node positive or negative.  Yours is so small that it might just be a small percentage difference in DFS.

    You also have the option of getting a third opinion.  

    I would not downgrade the importance of having children.  You will be watched closely for cancer returning and just because there are stories out there of people whose returned, that doesn't mean yours will.  Most women end up staying cancer-free.  There is no way to tell if you will be one of those people.

    You might discuss with your doctor preserving some fertility or saving some eggs.  Maybe you can do that and then have chemo.  Some women have their fertility return after chemo too.

    I also know a woman who is doing herceptin alone - no chemo.  I know this is highly unusual and there are no studies on it (to my knowledge) but it might be worth asking about.  

    Good luck.  You are really between a rock and a hard place and there are no easy answers for you.  Beesie is the genious when it comes to interpreting data so I would listen to her.

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  • redsoxfan
    redsoxfan Member Posts: 162
    edited October 2010

    Grade 3 and HER+, and your young age.  Size is secondary.

    I agree with the other members, go for the treatment. 

    PS  What a beautiful little one!

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2010

    Actually, size does matter.  A 1cm tumor has 500% more cancer cells than a 2mm tumor.  The concern is that any one of these cancer cells might escape the breast and take hold somewhere else in the body.  With equivalent pathologies (ER+, PR+, HER2+) obviously the risk is greater for the person who has a larger tumor. This is why different treatments are recommended for different size tumors, even when the rest of the pathology is the same.  In fact according to lifemath, the risk of mets is over 450% higher for someone who has a 1cm ER+/PR+/HER2+ tumor vs. someone with a 0.2cm tumor with the same hormone status. The risk is over 800% greater if the tumor is 2cm in size (vs. 0.2cm).

    Jennifer, to your million dollar question, "will it return without treatment bc it was so aggressive OR should i relax bc it was so small?" you need to get the real information on this, not opinions and speculation (including mine).  Talk to both your doctors, and even get a 3rd opinion, as Coolbreeze suggested.  Find out from each of them what your risk of mets is without additional treatment, and what it is if you get chemo and Herceptin. 

    - If your risk of mets without treatment is 3% and your risk of mets if take these treatments is 2%, then you might decide that these treatments are not worth it for you (keep in mind too that there are risks that you expose yourself to by taking these treatments, as well as side effects such as possibly impacting fertility).  

    - On the other hand, if your risk of mets without treatment is 15% and your risk if you take these treatments is 5%, that would be a much more compelling argument in favor of taking these treatments. 

    That's the only way to really answer your question. Your oncologist should be providing this information.  You should not be expected to make this decision without knowing this. 

    As Coolbreeze suggested, http://www.lifemath.net/cancer/breastcancer/outcome/index.php can be helpful too, although it's not a substitute for getting this information from your oncologist.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    BTW you might find this article interesting.Not sure how reliable this source is. Also remember this is only 1 study therefore doesn't mean it's true:

    Women Treated for Breast Cancer While Pregnant Have Improved Survival, Study Finds
    ScienceDaily (Sep. 30, 2010)

    http://www.sciencedaily.com/releases/2010/09/100929191316.htm 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2010

    JPMercy-

    I know it is most likely marked negative, but have you checked your report for any LVI?

    (lymphvascular invasion) If that is marked as present, or positive I would definitely do chemo. There are 2 gals on these boards that had tumors less than 1cm, (one with 4mm of Her2+ microinvasion) and no nodes, and low and behold it had escaped through her vascular system and created liver mets on presentation. This is not meant to scare you because this only happens 2 percent of the time where (node neg) present  with mets upon dx. However, I would want to know if I had LVI present before making the decision.

    I had stage one node neg but relatively speaking a larger tumor than you, I had no LVI but with the aggressive nature I definitely needed do chemo. However with your size it is definitely something to weigh as I still have some SE's 2 yeas after chemo. I and many that did THC have neutropenia (low neutrophil counts) who knows if that will be a long term problem or not.

    I had a year of chemo and a year of ovary ablation and my periods still came back and many do at your young age.

    Good Luck with your decision. 

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited October 2010

    jpmercy...all three of my docs, Breast surgeon, medical oncologist and radiation oncologist, cannot stop singing the praises of Herceptin. My BS was very dismayed when he saw that I was ER,PR negative and HER2 positive. But he said how lucky I was to be dx at a time when Herceptin is available. The MO said the same thing. The real surprise was the RO who just couldn't say enough good stuff about Herceptin. He credited many good outcomes on the Herceptin vs. the rest of the tx those women received.

    So now I don't count down the number of Herceptin tx I get like I did with the chemo until it was done. I count UP with the Herceptin, lucky to think that I will receive tx #7 this coming Wednesday and look forward to at least 11 more after that every three weeks through the end of June 2011.

    Whatever you decide, blessings to you and your young family.   Bon

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    How do you know if you have vascular invasion? I know I don't have LVI but can't it get into the blood supply another way?

    I don't see it on my path report. I assumed I do because of the size of my tumor but then again I don't have node involvement so maybe not.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2010

    Lago

    It should be on your path report, I would not assume you have it as Many with above 2cm tumors do not, and several with less than 1cm have stated they do. It is not anything to get too worried about it is just one more piece of the puzzle. Even my Onc states that many of the negatives are misdiagnosed as they only look at several pieces of tumor.

    Mine was listed on path report under lymphvascular involvement, if you don't see it you can ask your surgeon about it.

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  • lago
    lago Member Posts: 17,186
    edited October 2010

    Oh if that's the same thing then my says absent.

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  • juliejfsrj
    juliejfsrj Member Posts: 57
    edited August 2013

    See if they think it is worth doing herceptin alone.

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  • elena1
    elena1 Member Posts: 41
    edited October 2010

    I am Braca + I had BC at 36 and now again @ 60. I agree...I would not take the chance. I wouldnt want to take the chance of not being there for the child I already have. Just my opinion..Good Luck to you.

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  • jpmercy
    jpmercy Member Posts: 189
    edited October 2010

    thank you everyone this is all very helpful sorry i left out i was 0/6 nodes so no LNI

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  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2010

    JP

    LVI is different than lymph nodes, it is vascular invasion (the blood). You can have neg nodes and still have or have no vascular involvement. 

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  • kimbers
    kimbers Member Posts: 26
    edited October 2010

    Jennifer,

    I know what you are going through. I had a very similar diagnosis. I was dx at 39. I have 3 kids under 10. I had 3cm of DCIS with a several areas of microinvasion, the largest being 2.5mm.  I got opinions from Stanford and UCSF. I ended doing a trial for small node negative HER2+ tumors at UCSF. I did 12 weeks of weekly Taxol and Herceptin and continue on the Herceptin till December. My oncologist at UCSF is well know in the breast cancer commumity and she said my cancer just needed a "whiff" of chemo not the full guns. I found the regimen doable. I did lose my hair and was tired but I made it through. I feel fine on the Herceptin now. I was premenapausal and my periods did stop for a couple of months but have come back. I am glad that I got the benefit of Herceptin. Maybe you could talk to your oncologist about this regimen. If you have any questions let me know. good luck with your decision. I know it is not easy.

    Kim

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  • jpmercy
    jpmercy Member Posts: 189
    edited October 2010

    mmm5, thanks sorry i wasnt srue what you meant i dont know that i will ask on monday at the onc, thanks :)

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