Ladies in their 40s
Comments
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meginzal - I asked by BS about being at greater risk for ovarian cancer. She said since I'm not braca +, it wasn't an issue. I'm curious too. I'm ER + and pr +.
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Melinda
I had mine out 6 weeks ago as my mother had early ovarian after breast. I will go for genetic testing next week but I did not want to wait to have them out. Honestly it was the easiest thing I have done this entire journey.
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I am going for Genetics consult tomorrow. I have not had surgery yet, so it's not "too late" to decide on MX or BMX. I know a lot of you have opted for BMX, I read about it all the time, but my BS is very positive/confident about lumpectomy for me. Her view is that even pre-chemo, the size of lump/my breasts/placement/etc would have led to a very good cosmetic result. Mid-chemo imaging showed a tumor that has decreased at least by half (MO believes there is no longer a mass). There is a good chance that I'll have PCR by time of surgery. BS says cosmetic result should be "excellent."
But of course, I don't want to go through this all again! I've had BIRAD 3 mammos on my left breast in May and December (the confirmed cancer is in my right breast). I had an MRI in December, where radiologists conferred with BS and said that they believe it's just calcifications, but they keep it on BIRAD 3 with a 6 month follow up. I will have a pre-surgery MRI in April to see if there's any change. I have very dense breasts and I wonder if my keeping them I am committing to a life of BIRAD 3 mammos with 6 month follow up ad infinitum.
Any suggestions for my Genetics consult re questions that I should ask are very welcome!
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Be prepared with all the family that has had cancer as far back as you can with the type of cancer, what age they were diagnosed and if they died of cancer or something else. I took my Mom to the appointment and she was very helpful since they never told me I needed to know about all the detailed cancer history. Good luck to all of you still in active treatment.
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Thanks, Momof3.
They had me submit a detailed family history in advance. Needed a lot of help from my parents to fill that out. No BC in my family, but my grandmother died of stomach cancer. The genetics counselor assistant walking me through the forms found that interesting. I've read that some stomach cancers are also Her2+ (or at least, Herceptin is sometimes treatment for certain stomach cancers) so I'm wondering if there is a genetic connection there. My great-grandfather on the other side of the family also died of stomach cancer. Stomach cancer is rare so kind of odd that relatives on both sides of my family died of it. No other cancers in my family.
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Hello -
I have not posted in awhile. I am done with chemo. I am almost done with radiation, 13/20 done. I am on tamoxifen. As active treatment approaches the end, I am mentally struggling. I am not sure why. I think every little ache is the cancer spreading and think about whether or not I should get my ovaries removed or if there is something else I can do. I constantly worry about what if my 3 year old twins have to live without me. What if I don't get to see them grow? What if I don't get to hold my grandchildren? What if I am not here for their first day of school? I can go on.... Then I remind myself that the statistics are favorable and this is curable but I can't stop my mind and heart from worrying....
Any advice?
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ROAREUS,
I think most of us completely relate to your fears and feelings, and they are all normal. I am now 11 months out of chemo, and I had these same exact thoughts and worries when I approached the end of my active treatment. The only way I handle these thoughts, fears and feelings is to focus on today and have as much happiness, love and life filled into today as possible. I cannot control tomorrow and I cannot control the past, but I still have today to live!
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Hi I'd like to join in, this thread is an inspiration to me:) I was dx at age 44 and I'm now 45.
I had an ooph a couple of weeks ago (feel fine now, really no problems) for exactly the reasons that you are worrying about ROAREUS. I don't know if it will work, but where there's a chance, that's where I am! I can't say what will work for you. I think it is usual for us to feel like we're mentally struggling, particularly as active treatment comes to an end. It's like we're just left to our own devices, with all the support and structure gone. I hate that noone can tell us the best thing for us.
My cancer was Upper inner quadrant so I worry that it is lurking undetected in the inframammary nodes under the sternum. Then I think, what if it just bypassed the sentinel node and is already in my bones or major organs?? Then I think, well if it is, then we'll just have to deal with it, somehow. I think we have post traumatic stress from being confronted with our own mortality (and all the surgery, loss of body parts, evil treatments), but we haven't died - and we're not going to anytime soon!! You will be here for your babies:)
Congratulations on getting through chemo.:) It wasn't part of my treatment, but I have nothing but admiration for all the ladies that have to go through that.
It's good that even after you run through awful scenarios in your mind that you then tell yourself that your prognosis is favorable. I think this is what will get you through those dark thoughts - that, and the support from your friends, family and the gals here.
I'm going to click submit before I chicken out( all that waffle, sorry, I mean well:) ) xx
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Rosreus
I could of written your exact post 7 months ago but I can tell you that every week, it gets better. I still have aches and pains from the chemo and now from the Tamoxafin. Some days after sitting on a hard chair for a few hours, I am so stiff that I have to stumble around for a few minutes before everything loosens up! I am only 43! The good news is that I am starting to mostly feel like my old self again. The fear of reacurance is constantly on my mind with every little ache and pain. I try not to let it rule my life. I had an ooph as my mother had early stage ovarian after she had breast cancer. 20 years later she is alive and well. I keep telling myself that there is nothing more I can do to keep this beast from comming back and I congratulate myself for being so aggressive with my treatment so hopefully I can watch my children grow up. You should tell yourself the same thing.
Hugs to you😍!
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Got my BRCA results back - negative for 1 and 2. They are running BART (extended testing) for Ashkenazi ancestry. Tomorrow meeting with my new breast surgeon for a second opinion and to hear her pathologist's second opinion on my biopsy slides. Then I imagine we will schedule surgery. I am nervous but had an intensive session with my therapist that helped. Deep breaths!
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Hi all. I was dx'ed in Dec right before Christmas (Dec 15). Merry Christmas right? Nothing like getting to tell your kids THAT the week before Christmas.
I chose no chemo. ROARUS I think you will worry for awhile regardless of the options you chose. I would think we all do. I am grateful that things were caught early, then alternately worried that there are things they didn't find - yet. All we can do is live now and well. I would think that moving further from the chemo and rad therapy will help you find a different perspective. But I suspect this experience will change ALL of us for good. That may not be a bad thing. The reality is ANYONE can die at ANY time, but our blinders are off now and we KNOW it.
Like oranjemama I have the predictably dense pre-menopausal calcified breasts and I was worried I would be under intense scrutiny forever but guess what? We will be anyway because we have a cancer dx. I chose the lumpectomy even though mine was two spots and I had to have three guided biopsies (one MRI guided on my Rt. Breast which isn't the side dx'ed) two ultrasound-guided on my left. After reading about all of the potential complications and discomfort of those who had BMX or unilateral MX I am not sorry about my choice. I realize I could be later - but hindsight is ALWAYS 20/20. We have to try to take deep breaths, read the research and make the best decision we can make in that moment.
I am not sure about others but my BS subjected me to a bone scan, and a CT scan prior to making surgery arrangements to try to be certain that there was not metastases prior to the surgery.
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Thank you all for your encouraging words everyone. Today, my head is winning over my heart. The intellectual side of all this is telling me that every predictor tells me that I have a over 90% chance of survival within the next 10-15 years (varies by 1 to 2 percent depending on which predictor you use). Keep on telling myself that I am being treated at one of the best cancer centers ( I am very grateful to live in NYC), have one of the best BS & MO out there and we have gone as aggressively as possible. If only my heart can listen and believe.....
I did not have any scans before my surgery. When asked about it, I was told that CT scans and MRI are overused and in my situation, it's not necessary. When asked about a bilateral mastectomy, I was told that these questions are being asked based on fear and not fact. Lumpectomies with radiation have the same survival rates as mastectomies. Some studies show that lumpectomies with radiation have slightly better results. Then I was told "if that was the best thing for you, don't you think we would recommend that?" There was a sigh, some eye-rolling, and fluttering of the eyelashes. Nonetheless, I stick with this BS because everyone agrees she is one of the best in the country. While I can use some sympathy/empathy, I appreciate her harsh style because her responses tell me how confident she is with the surgery choice.
Two to three weeks after my surgery, I met with the MO, who was a little wishy washy. She gave me chemo choices and passively advised me to not participate in the SWOG trial that is studying whether or not someone in my situation should do chemo. Then I got pushy. Then she said she doesn't want BC to be an issue in my life ever again because this is curable so she recommended that; I not participate in the trial and; get the most aggressive chemo - dense dose ACT. When I asked about the removal of ovaries, she felt that we should wait for more data as it poses other health and quality of life issues. When I finished chemo, at my follow up appointment, she too looked at me and said that she is glad I had breast conserving surgery. Her last sentence before she left the office was "you did everything you could."
Today, I am telling myself that I should listen to these doctors because they know what they are doing..... Who am I to doubt them. That's today.... Tomorrow is another day. So, today, my word of advice is when you go down the road of doubt, remember that no matter what stage you are in, look at the statistics. Statistics for curing BC are pretty dam good. So, ladies, let's focus on the FACTS and not allow FEAR to creep into our hearts.Have a good weekend.... Sending you ((((( HUGS)))))
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ROAREUS, the statistics can be hard to wrap your head around but it is worth it to get into a state where you are able to try and do this with a calm head. In my genetics consult the other day, I learned that if I am BRAC negative, my chance of a 2nd primary cancer is 3.5% before the age of 50, and increases by .5% per year up to the age of 70, capping out at 20%. I had known that just by having had BC once, your change of a 2nd cancer is increased, but these statistics were helpful to understand that it is still really low numbers that you talk about. If I am BRAC negative, then I have an 80% change of NOT getting a second cancer by the age of 70. That's not bad.
Of course, I won't know whether I am BRAC + or - for another 3-6 weeks.
I'm actually getting testing for a broad panel of genetic cancers. Myriad is running a pilot with certain sites (and mine is one) where I'll get this broad panel for free (no insurance payment required either). (The product is described here: https://www.myriad.com/products/myrisk-hereditary-cancer-panel/). So, I should be learning a lot.
I'm also participating in a genetics registry for the City of Hope. They are building a registry with 15,000 people's DNA to continue research into as-yet-undiscovered genetic mutations for cancer. This is not a clinical trial, so it's not anonymous. They will contact me if they uncover mutations trends they think I should be aware of in the future.
I think all of this genetic research is way cool.
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Oranje_mama - I agree... statistics can be difficult to understand but is definitely worth the look.
I
also found my genetic counseling helpful. Fortunately, I am BRCA 1
& 2 negative. I am also participating in a registry where they
notify me with mutation trends they think I should be aware of. Like I
said gotta focus on the FACTS, not FEAR.0 -
About fact vs fear...well said ROAREUS. Like you , I took an aggressive route to my treatment and of course now I'm second guessing everything. My MO is not very encouraging nor discouraging; she's very middle of the road in her words. Maybe she doesn't want to falsely give hope to her patients. Of course I second guess that she's not telling me something...crazy I know. I'm in rads now. Gong good so far. Now I am contemplating doing a clinical trial but if nod, I will have to switch cancer centers. The new I we would be 1.5 hours from my house. I'm not sure what to do....
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Hello Ladies,
I am new to this site as I was just diagnosed on February 25th. First with DCIS and the next day with IDC when the official pathology report came. In shock, disbelief, no family history of breast cancer. I am 46 in a good health, no health problem before. I found out about it after the routine mammogram that showed some microcalcification, and then was scheduled for the biopsy. I didn't feel anything, doctors couldn't feel anything either in the beginning. After the MRI one of the doctors (and myself) started feeling lump but doctor wasn't sure if it was not caused by MRI and swelling inside. The MRI showed "mass" of 6.5 x 1.5x 3.8 that was described as possibly microcalcifications and DCIS. Based on the biopsy it is known that there is also IDC there. The question is how much of it is DCIS and how much IDC. I went to two doctors. One suggested lumpectomy first and then possibly mastectomy (because of the larger "mass"), the other doctor opted for the mastectomy because he said I would have it anyway to have healthy margins. I decided for the simple mastectomy on my right breast (left didn't show anything either during the mammogram or MRI), and just had the surgery last Wednesday, March 12th. The sentinel biopsy showed microscopic cancerous cells in the node so my doctor decided to remove all other (16) during the surgery, because he said that with the sentinel showing even microscopic I would be heading for the next surgery anyway. Within the last few weeks I went from being healthy (or unaware) to having mastectomy. Still cannot process it all - too much too fast. Juggling work, raising my teenager girl and wife responsibilities while my family is still in shock and disbelief. My family couldn't be more supportive. Now waiting for the results from the pathology results that should be ready this coming Wednesday the latest. Praying for the best results possible - whatever it could be, definitely hoping for clean nodes and small IDC. Thank you for listening and best wishes to you all!
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Springsoon, that is so much to process in such a short time. Praying for you. Whatever the news, you will get through this. The waiting is the bardest part. Somehow it seems like I had to do all of my waiting over a weekend to!
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Thank you Oranje_mama. Yes, definitely waiting is very hard. At least we have a sunny weekend.
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Thanks for starting this thread. Was 42 in Nov 2013 during left mastectomy for DCIS. No family history, BRCA negative so it was the last news I expected in my 40's with a teenager at home. My friends told me stories of their mothers experience which was supportive but glad to see input on this forum from ladies at this point in their life with kids, work, etc
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Hi everyone, I am new here. I was diagnosed at age 44 in July 2013 and I am now 45.
I had a lumpectomy and internal high dose radiation. I just hope I chose the right treatment. I did not have to have chemo because of my onco score of 18.
I am ER PR positive and Her 2 negative and now take Tamoxifen since Sept. I am also Braca 1 and 2 negative.
I changed Oncologists in December and after hearing about my sister dieing at age 44 from stomach cancer he insisted I get her pathology reports which luckily I was able to obtain. She died of a rare type of diffuse gastric stomach cancer caused by the E-Cadherin gene. They are now saying that this gene is genetically linked to stomach, colon and lobular breast cancer. It took until February to get an appointment with the genetic counselors and somehow they called the wrong department of my insurance company so never got it pre-approved so I am still waiting for preapproval for this blood test. They are suggesting if I have this gene, not only do my siblings and children need to be tested but that I will have an 80 percent chance of getting one of those other cancers. Their suggestion is if I have the gene to go to the Mayo Clinic and have both breasts removed as well as part of my stomach.. WAITING !! I can hardly stand it!! GRRRR...
This Friday I see my Oncologist and also have a mammo and an ultra sound as well as blood tests scheduled. My cancer was found with my first ever mammo. So I am scared to go have this one!!
This has been a rough year in our family- My cousin was diagnosed with breast cancer at age 45 in Jan. 13-- My 33 yr old niece in May 2013 so I decided to go in and I was DX in July 2013 and then two months later with my urging my oldest sister was dx with breast cancer at age 60.. SCAREY!!
Before this I did find out I had two aunts with breast cancer one of which had ductal and my grandfather also died of stomach cancer when he was 60. Its just all scarey....
Thank you all for letting me vent.
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I'll join. I've just been diagnosed. I'm awaiting genetic counselling as the BCRA2 gene runs on my mothers side of the family. I'm 40 years old and a mom of 2 boys ages 2 & 4.
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Welcome Windwalker
So sorry you have to join us but I can honestly say that this is the best, most supportive group EVER!
Hugs.
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Hi all! I just joined this site earlier today & posted in the introduction forum. I was directed to check out the forum for younger people who have been diagnosed with bc.
After having a routine
mammogram on 2/18/14; a repeat mammogram was needed due to a mass
showing up on the film. Second mammogram done on 2/21/14; followed that
same day with an ultrasound & a core biopsy. I received the news of
my diagnoses of IDC on 2/24/14. No history of breast cancer & I'm 41
yo; and my results for BRCA 1 & 2 were negative. Scheduled for a
mastectomy on 4/8/14 with immediate reconstructive surgery. I honestly
feel like I'm having an out of body experience & that I'm watching
from the sidelines. I have good days and bad and I'm trying not to dwell
because honestly there's nothing I can do to stop what is happening to
me & I've taken on the attitude "It is what it is".My
husband has been my rock & has attended every appointment with me,
but feels I needed to connect with others that are going through the
same situation as me....so here I am. While reading many of the threads
brings tears to my eyes (today is a bad day) it also makes me realize I
am not alone in this fight.0 -
Hi Alexmatay. Your story sounds very similar to mine. I was 40 y/o, no family history of bc, when I was diagnosed with bc during my first-ever mammogram. I was in total shock, felt like I was Alice falling down the rabbit hole. I am jealous that you will be having immediate reconstruction. I had to have tissue expanders for a year, not fun. Anyway, I am almost two years post-diagnosis. I'm sure everything will work out great for you, but its a difficult process. Feel free to post questions, vent, whatever you need.
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Windwalker, I'm there with you waiting for the genetic test results. Not expecting BRAC+ as there is not BC running in my family but the genetics counselor noted that I have a small family, with lots of men, and some significant other cancers. So who knows.
Alexmatay, I so hear you on out-of-body experience. My cancer was found on a mammo November 15 - so it's been 4 months, and I still feel like that sometimes. One month out I was still reeling. I got my 5th chemo last week - one more after this. Still a long road ahead (I did chemo first) but I start to see the light at the end of the tunnel.
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Alexmatay - I can so relate with the out of body experience. I am about 7 months post dx and some times I wake up in the morning thinking it was a nightmare.
Not that I am a veteran but those of you who just got diagnosed, you will be amazed at how strong you are and what you are capable of.
For me, having my 2 year old twins at the time of dx and now 3 years old, have been a blessing. When it's all said and done, this F****** cancer will not cheat my family, friends, and me out of the joy life has in store for us.
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Capricornchrissy: I too can relate to Alice in Wonderland falling down that rabbit hole. After having my ultrasound, that's when the Dr told me I had a mass that she was extremely worried about.....that was about all I retained & if I had to bet my life on what else she said, lets just say I wouldn't be here.
Orange mama: what was the reasoning for doing chemo first for you? I've been fair warned that there's a good possibility I'll have to do chemo after & I've wondered why they just didn't have me do that first.
Roareus: I hear you on waking up thinking it was a nightmare.....hopefully with time that will pass for all of us feeling that way
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Alexmatay: I have also wondered why some docs have you do surgery before chemo and some have you do surgery after chemo. I had my surgery first, everything was removed as far as they could see, and then I had chemo to get rid of whatever might be lingering. I spoke to several docs and they all thought that was a good way to go. I have no idea why some do it differently.
Roareus: I agree that my young kids kept me positive and focused during my year of cancer treatment. It wasn't an option to let myself get down. I was diagnosed the summer before my son started kindergarten, and I was determined that I was still going to enjoy that special time and not let cancer rob me of it. For me, it was also important prepare for the days after surgeries and chemo by arranging for my kids to stay with relatives, so that they did not feel the stress of what I was going through.
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some docs advise chemo first to shrink the tumor so that a lumpectomy is an option (or so that cosmetic result of lumpectomy will be better).
In my case, having chemo was a given because I am Her2+. It was only a matter of when, not if.
Originally I was referred to the MO right away because Perjeta, a new drug approved in October for Her2+ early stage, is only approved for neoadjuvant (pre-surgery) use. So I got port placement and pre-chemo testing done, 1st chemo scheduled and was all geared up for chemo first. Then my MO came back from the San Antonio BC symposium and said that she was no longer recommending Perjeta for me because reported results were so good with Herceptin alone. At that point it was my choice: could have done surgery first if I wanted (tumor was small enough for lumpectomy already). I decided to go ahead with chemo first since I didn't see a downside and to get it over with. When you get chemo first you can see whether it is working. I had an U/S after 3 rounds that showed the tumor was half the size it was. And now it is no longer palpable
. I am hoping for a "PCR" (pathologic complete response) which means no cancer to be found when surgery is done.BS has told me that she normally would want me to have surgery within a month of finishing chemo but that since I'll be continuing on Herceptin it would be OK for that timing to slip a bit.
The clear message from my docs has been that Herceptin is the key to treating Her2+ BC. I'll do everything (chemo, surgery, rads, tamoxifen) but Herceptin is the essential piece.
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oh and wanted to say that having young kids helps me get through this and stay positive too. If nothing else, my younger DD who is in Kindergarten injects so much comic relief into our lives. I love this age. It must be so exhausting to be a K teacher, but they must get at least one bellyache laugh every day! My youngest often has the rest of the family in stitches at the dinner table. Don't know what we'd do without her!
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