All of the risk factors but BRCA negative
Comments
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Wanted to send you good thoughts and prayers on your BMX!! I, too, had LCIS (extensive/multi-focular) plus family history (though negative for BRCA).
My gynec did a risk eval and decided that, even though I had a "normal" mamo and sono on Dec 5th, I should have an MRI. That showed "hot spots" in each breast which required biopsies done. Those showed LCIS. Lumpectomies showed extensive and multi-focular.
I decided to do the BMX with NO reconstruction and just wanted to tell you that I am SO THRILLED I did it!
Surgery was Monday May 9th. I felt very good upon awaking from surgery.I was blabbering with my parents, husb, and sister and was overjoyed that it was over. I stayed two days in hospital but really that was just because I figured I may as well do those first two recovery days away from my kids. I never felt like I had been hit by a truck as I had feared. The breast area does not hurt at all. The worst part of the whole ordeal is the drains are annoying. They seemed to get more sore day by day. BUT that is it! They are annoying and sore but I felt great overall. I rented a recliner to sleep in. I only took tylenol-- and mostly even forgot about that during the day and only took to sleep. By that Friday (May 13) I called dr bc my drainage was 30 cc an I was hoping the drains could come out. They convinced me to wait till monday which made one week with drains. Drain removal was easy. I took a percocet prior but really I didn't need that (In retrospect). The day after the drains were out I drove to TJ MAXX and tried on clothes!! For a couple of hours!! I have the same stamina I had before and I feel like my old self.
I attribute the quick healing to NOT doing the reconstruction! I am fine with it and so is my husband. When he saw me at drain removal he was giving me the thumbs up sign the whole time. We just want to move on with this and I did not want implants or a long flap surgery. Yes, I can change my mined but I know that I won't. Mostly, I find that other people wanted me to do the reconstruction. I guess they just feel bad...? But my husband and I are on the same page. I went the day before my surgery to get fitted for a prosthetic at a lovely local store. I was impressed with how pretty all the bras are and in my mind I think "why would I want to go through the grueling process of reconstruction when 90% of the time I will be dressed and nobody will even know?"
I got my pathology back one week after surgery and no cancer was found! So grateful. Bu they did find more LCIS which we hadn't even known about. I am so relieved I did this. Yesterday I saw an article about Gerri Willis a FOX Business reporter. She has lobular cancer stage 2. She had a normal mamo within the year! She explained how difficult lobular is to detect. I have to say this whole LCIS/lobular thing has been eye opening! I really recommend the MRI for anyone with a family history.
GOOD LUCK TO YOU!!! You will do great and you will be so relieved to leave this all behind and feel confident you will remain healthy for your beautiful children!
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Thank you Jpicch! It is so encouraging to hear your experience. I really am looking forward to moving on from this. In a way, recovery is going to be like a mini vacation for me. Hubby is taking 2 weeks off. The older kids are all set to help out. Our neighbors are ready to pitch in. I just don't know how long I will be able to sit still!
I'm glad I decided against reconstruction. The thought of other surgery was just too much. And I've grown up with many flat family members, so it's not that odd (the family history of BC). But you are right. Many people think I will eventually want recon. Everyone is different. I'm glad recon has gotten better for those who want/need it. I just know it's not for me.
I'm glad your final path report was free of invasive. I'll be glad when this is done and I can know my final results. That's the last little bit hanging over my head. Well, that and what to do about the history of ovarian and endometrial cancer.
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I agree with you that reconstruction is an individual choice. I think it is good there are options and some people feel worse to NOT have it. No judgments here. You hang in there. I found the weeks leading up to the surgery very nerve wracking. Cannot tell you the relief when it's over!
I know everyone is different. I am not trying to minimize the after effects of surgery, but what I told you is true. I think you will be surprised how well you do!
I will keep you in my prayers and please let us know how you do!
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"I really recommend the MRI for anyone with a family history."
That's for sure!. (I also have dense breasts).
I just had a breast MRI last month after my first biopsy in March showed IDC. The MRI keeps showing things that didn't show up well or at all, even on a diagnostic 3D mammo. Wish I'd had it sooner.
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And I'm sorry, but was does "gynec" mean?
Thanks
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My gynecologist did a risk assessment.
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Yesterday I had a very disheartening conversation with my OBGYN. I was meeting with him to talk about ovarian cancer screening. Even though I I'm BRCA negative, because there is ovarian cancer on my dads side it was recommended that I be proactive since no one else has been tested in my family. So my negative is not considered a true negative.
When he heard I was going to have a bmx on Wednesday, he looked at me like I have two heads. He kept saying, why don't you just have a lumpectomy. Then your risk goes down. He didn't understand the lifetime risk conferred by LCIS. He didn't understand that lumpectomy to remove LCIS is not an option because it's usually diffuse. He didn't understand that the risk is bilateral. I found myself having to defend my long thought out decision to a doctor that I thought would know more. Then when he found out I wasn't doing reconstruction, he looked at me like I had three heads.
When I tried to have a conversation about ovarian cancer, all he said was you don't have a first degree relative. I kept trying to explain that it's my dad's side, he can't have ovarian cancer. But he had pancreatic cancer. And that is what you see in males when you have a family history of breast and ovarian. Two of his sisters had ovarian, and two had breast. It's like he didn't grasp it.
It was very frustrating. I left feeling uncertain about everything.
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Ugggh! I am sorry you went through that! But I really think the only uncertainty you should have is with the doctor! Everything you want to do is very appropriate from what I have read. My pathology from the mastectomies showed more LCIS! I was floored because we hadn't known about that from multiple imaging, biopsies and lumpectomies. I am so happy I did the surgery and glad that the pathology showed only LCIS-no cancer.
It may sound extreme to him but I think there are many with lobular cancer that wish they could turn back time and prevent. Best of luck. Think positive and be proud of how brave you are!
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I'm so sorry you are going through all of this just moments before you're having major surgery... like you don't have enough on your plate! I just wanted to wish you well through tomorrow and I know lots of us will be thinking about you/praying for your speedy recovery! I know for me your story has been a godsend and such a help. I started this journey just a few months ago and have been scouring boards like these trying to understand everything. I was a BRCA uniformed negative until just a few days ago when I finally tracked down a along lost cousin (after my mother's sister died from BC in the 70s, she was adopted out of the family) and she is BRCA 1/2+. I thought that meant I was sort of "in the clear" but after another meeting with my oncologist and a phone consult with another oncologist further away (I live in the middle of nowhere) I have been told that family history, in both Dr's opinions, should trump genetics in my case. They said "Genetics are a relatively "new" science and with the ever changing discoveries and guidelines..." I don't know, honestly after a while you take in so much information it just feels like how could you ever choose a path?!? All I know is there are only 2 women left on my maternal family tree, everyone else is gone to breast cancer (and there was a LOT of them)- I now have breasts with microcalcifications and MRI detected "enhancements" (unbiopsied at this time because no one close by does MRI guided biopsies so we are in the scheduling limbo) and I just appreciate women like you who are both being proactive AND talking about it. You are giving those of us who are scared, up at midnight, reading forums and praying SO much hope and I just wanted you to know that I will be thinking about you and your healthy, fast recovery tomorrow! Jpicch is right- you are SO BRAVE! Thinking good thoughts for you!
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Thank you SO much everyone. Today is a day of rest and preparation.
I know I can't let the doctor get to me. In fact, I really need to find a new OBGYN. He also tried to tell me that I should take birth control to lower my ovarian cancer risk. When I mentioned the link between birth control and breast cancer, he said there was none. I asked why the risk calculators that the doctors used for me specifically asked if I used birth control and for how long. He didn't have an answer.
I dont feel especially brave. In fact I'm doing this because I'm afraid of the cancer that I know has killed most of my family. I will be very relieved when tomorrow is over and I can concentrate on healing. Still praying for only LCIS in the final pathology.
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"it was recommended that I be proactive since no one else has been tested in my family. So my negative is not considered a true negative."
Same here. Again a lot of parallels to our stories. All my relatives who had cancer are now deceased. And I was unaware of the link between a male relative with pancreatic cancer (my mother's older brother died of this) and ovarian cancer.
I have also been having problems lately with large ovarian cysts, and they think this is what's causing my recent UTIs and related issues.
I did have a CA-125 test which came back good, but once I get thru my upcoming BC surgery I am going back to my gyno to talk about having ovaries and fallopian tubes removed. Plus, and someone please correct me if I'm wrong here, my BC is 100% ER/PR+ so removing my ovaries will also reduce my odds of future BC. So I feel like doing this will give me triple benefit.
Best of luck with your surgery tomorrow. I think you are absolutely on the right track, and I'm an engineer and have done some of my own research on this. I would absolutely get a new gyno, If he just didn't know everything you do here that would be one thing, but given how much he poo pooed you. Can your BS recommend someone?
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Yes, jenn, having your ovaries removed will help. In fact, I have a friend who's sister did just that. She was diagnosed with LCIS with a strong family history 23 years ago. Instead of the bmx they wanted her to have, she enrolled in a high risk study through Dr. Carol Fabian's lab at Kansas. They took breast samples every year and looked at cellular markers to establish personal risk. After 5 years in the study she had her ovaries removed because of a problematic cyst, and the markers went way down. Over the years, the markers started to climb back up again. After 20 years of high risk surveillance It was recommended that she have a pbmx. She told me that she never realized how stressed she was over it all until she finally had the surgery.
Thank you for the well-wishes. Yes, I need to find a new OBGYN. For some reason, that's a difficult doctor for me to find.
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Thinking about you tonight. I know it is some strange alternate reality. Just know I am praying for you! You will do great !
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Hang in there momof6littles! I encountered a LOT of resistance from some drs along this journey. Especially about the reconstruction issue. I also get a lot of pressure on the ovarian cancer issue, but in my care, it's the other way around. They want me to have them out, but I chose salpingectomy and monitoring. You have to do what you think it right. if you got an answer you dont like, see another doctor.
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Thank you Mommy2six. Surgery done. Hooray! I'm resting in my room and can say that after 8 hours, I feel much better. Silly me, I decided to wait on pain meds to see if I needed them. After one IV dose to get the pain level down, I've been fine with Tylanol with Codiene.
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Also, in regards to the ovarian risk. I read the book Cancer in the Family (really recommend it!!) and I've been in touch with the author Dr. Ross. She agreed that my OBGYN was misinformed. She recommended a geneticist at u of c that my insurance company will cover. Once I'm healed, I'm following up further.
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Well this is interesting. I just got home from the hospital and got a call from the geneticist I saw (and won't be going back to). Because of a mistake on her part I had a second genetic test done. This one shows a VUS in one of the Lynch Syndrome genes. Don't know which one yet. Lynch Syndrome is associated mostly with colon and endometrial cancers but also with an increase in breast, bladder, ovarian, pancreatic, liver cancers.
No colon cancer in my familythat I know of, but yes to all the rest.
Actual risk and management guidelines are not known due to limited data. Again, my mutation is not necessarily deleterious. More time and testing is needed. I'll discuss this with a geneticist at u of c once I'm healed and feeling better. Just something to note.
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Heard from surgeon's office. Only LCIS, no invasive, clear margins. Super happy
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Momof6littles, it's so interesting to read this tonight. I have a meeting with a geneticist next week and my moms results were what you described 11 years ago. We are hoping in the past 11 years someone else with our rare strain has been found. Of course it will be hilarious if it turns out I am not the same BRCA test results as my own mother. I have bilateral early stage so thankfully the BS was happy and non judgemental about doing my bmx. I'm triple negative but still think I should have my ovaries out because both my aunts died from ovarian. That may be an upcoming fight post my genetic counseling results.
Wendy the weimlover
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Sorry you had to go thru this, but I'm very happy for you,
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Hi Momof6littles:
Congratulations!
BarredOwl
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There are so many women here who have gone through so much. In a way I feel guilty (maybe that's weird) that I only had to contemplate the future possibility of cancer, versus the reality of cancer. The strength and courage of the women on this site is remarkable. Thank you so much for the encouragement and love shown.
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So happy for you!
And please do keep us posted, especially about any more info on the genetics. -
momof6----seriously celebrate, cuz that is really good news!
anne
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I too have an extensive family history of breast cancer and we are not BRCA positive either. My GYN watched me closely for years. Then it happened, cancer. But because we were on top of it, mammograms and ultrasounds every year, my 2 types of aggressive Breast Cancer were found early enough. If I had followed the current advice out there that "you don't need to get a mammograms yearly " I would be dead now.
I have had genetic testing and have donated my tissue / blood for research in hopes to further help the fight.
Stay on top of things, so even if you are diagnosed with cancer, it won't mean a death sentence. We can survive.
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Thrilled for your great news!
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Yay for those results!!! I'm so glad to hear you are recovering and (hopefully) doing well!! Keep us posted on how it all goes!
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Thought I would update, now that I'm 3 weeks out of surgery. I feel really good. Still a bit tired, but the soreness (really sensitive skin - I think it's nerve related) is lessening. I am personally very glad I did not reconstruct. I feel like it has helped speed up the healing process, and that was what I wanted. I honestly don't mind being flat (but I totally know it's a personal decision). Some thoughts and experiences for those on this path:
- work on abs before surgery. It definitely helps moving around afterwards to have strong abs
- do the stretches as soon as you can after surgery. I was told to start the day after surgery and do them 3-5 times a day. I SO didn't want to. I had very little mobility and it felt like a waste of time. But I did and by day 3 had much better mobility. Now, three weeks out I have complete mobility back but still stiff so still doing them, but only once a day. On this site there are links to videos for the stretches, tailored to recon or not:
https://www.mskcc.org/cancer-care/patient-educatio...
- 1 week after drains were removed I was given the OK to put lotion on the incision and massage. I was told by an assistant to a plastic surgeon that the scar creams with silicone were the only ones that really work. Otherwise just use any lotion (aquaphor was mentioned). Moisture and massage 3-6 times a day to lessen scarring. I tried aquaphor and didn't notice much of a difference. Well, I just started using 100% pure argan oil and it has really made a difference - overnight. The incision/scar is much flatter, lighter, looks less 'angry' and feels less sensitive. I highly recommend the argan oil. Just a drop or two on each side gently massaged in. By the way, I have used it for years as a face moisturizer. It's terrific and lasts a long time.
- post surgery Pilates. Just something for beginners, not a lot of arm work. The core workout you get with Pilates really helps bring in the abs and even out the look of a flat front.
- a mastectomy pillow! A friend of mine made me one and delivered it the day before surgery. It is made of fleece and I have hugged that thing every day. It helps you get the pressure you need in the beginning, it made sleeping easier because I had a place to put my arms, it protected me from the hugs of my loving little children. Here's a picture of one with measurements. The wide middle part goes against your chest, your arms through the lower area, the higher sides snuggle in around you and give support:
And finally, a big thank you for the support and well-wishes through this process. It has been a tremendous help
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