Ladies in their 30s
Comments
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Tiffany - You got a 2nd opinion from a BS? How about a 2nd opinion from an oncologist? My BS would do the surgery. She says it is my decision to make but says "some people would say this is extreme". She comes very highly recommended. I am at one of the best cancer centers in the country and would tend to believe my team of physicians but no one is advising anything anyway. They give me all the information and want me to make the final decision. It sounds empowering but it is so hard! I mentioned to Alyad below that I work in a hospital and most of my friends and my husband are doctors but this is not really helping! Did you have reconstruction? Do you have any feeling at all or are you completely numb?
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Hi vis...Welcome to our little family. These decisions are so hard, aren't they? Just to give you another perspective, I chose to have a lump/rads and I'm very happy with my decision. A few points about your situation... your tumor is small and since it's close to the nipple/skin it is easier to remove than if it were buried deep near the chest wall, and it is also easier to radiate.
My surgery was not very difficult, I had a relatively quick recovery, and I have sensation in my nipple/breast. My friend who had a bilateral mastectomy is still going through a long, painful reconstruction process almost two years later. And, unfortunately, she had a recurrence on her scar line (technically they call it a new primary, not sure why.) It can happen. Her docs explained that although it's rare, it happens because it's impossible to remove all the breast tissue. She still has to have MRI's and mammograms every 6 months.
You have a very early, very treatable cancer and a lumpectomy with radiation has virtually identical result (darn it, this isn't the exact word I'm looking for but the chemo brain is kicing in and I can't think of it right now- it's been a few minutes and I give up!!) as a mastectomy.
Bottom line, do your research and do what makes you comfortable. I was horrified at the possibility of losing my breast so I was incredibly relieved when my breast surgeon told me there was no reason to have a mastectomy.
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Vis- I was diagnosed at 35, and i have two kids, 4yr old and 2yr who was 1.5 at the time of diagnosis). With no family history, it shocked me to have this cancer. I was living in a dream just going to the appts and just asking myself, is this really happening.To make myself better, really, was to educate myself as best as i can in this cancer. My tumour was not big, so i was given the option for lumpectomy or masectomy. But thank the lord i did masectomy, as pathology revealed more smaller tumours near by in the same breast. SNB - i had a small micro met in one of them, so chemo was done and rads again is my option. i think the tumour is like 0.9mm from chest wall so thats why im going that route, again, being aggressive due to my age. Im done chemo now, and Rads will start in JAN for 5weeks. I still have a yr left of herceptin, but thats no biggy. Im getting genetic testing done to see if i will remove other breast and ovaries, but its highly unlikely due to no FH. You just go with the flow.........cry as much as you can because it helps the healing process. Ask for ur friends help, your going to need the help with the kids/foods/ and someone to be there with you to cheer you up.
My masectomy, made me angry because i felt deformed. Assymettrical, but i got used to it after 3 weeks, and then the hair loss from chemo, made me so upset, but u get used to it.
Being strong and know that you will beat this, is the best treatment out there. positive attitutude.
PM me if you need to chat
I
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Vis,
What kind of recon are you having? I was dx at 35 two years ago and had a unimast with immediate free TRAM. I'm a c cup or so, tumor was sub aerola , so had I gone the lump route the nipple would have gone with it anyway. At the time I was very traumatized by that fact and I kind of felt if that had to go, they might as well take it all. I just had the one tumor, but they did find what they called fibrocystic changes throughout the breast. I had the SNB (BTW, INSIST on numbing agent before the shot- horriby painful without - i was told a lidocaine shot would interfere with the tracer's movement- but lots of places use lidocaine and have no problems)
so i had a false negative SNB during surgery, thus no further node dissection, then it came back with a 2.54 mm spot- sooo I did chemo and rads. I refused further dissection and did radiation instead, which was probably over treatment. I have mild lymphedema probably due to extra scar tissue in the armpit area from having to use an alternate vein hookup for the TRAM, having radiation probably increased the lymphedema chances too. My first PS made the reconstruction a little larger than my natural breast and then wanted to put an implant in the good breast, which I said no way to. My insurance switched and I had to find a different PS- this fall I had lipo done to reduce the recon side and had nipple construction done- however the radiated skin didn't hold the nipple shape well and it flattened out pretty immediately, I'm getting the areola tattoo done this week.
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I'm just overwhelmed with sadness when I read everyone's stories of all they've been thru... I'm so sorry for all the tough choices everyone has had to make. This disease stinks. So glad everyone can offer different perspectives for the new ladies. Prayers for all- health and happiness!
Alyad, curious about the sub aereola tumor... does that mean it was directly underneath or somehow involved in the nipple? My margins were positive on one side because they abutted the skin but my bs said that is considered negative because it doesn't go into the skin. I did have to have 8 rads boosts because of the margin, however.
My bs said she has never, not once in her entire career, had a stage 1, lumpectomy with rads, local bc recurrence. In almost 20 years. She said if it's going to come back it's going to come back systemically. I thought that was pretty ballsy of her, but I guess she's pretty damn sure of herself! (I guess this doesn't rule out a "new primary" either tho, does it?!)
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Before I had BMX, I asked surgeon for MRI to make sure there is no other tumors in right breast, and no tumor at all in left breast but he suggested MRI is not good at picking my tumors blah blah, not sure if that is true. but I later decided to have BMX. Maybe you can ask for more test to make sure you are only dealing with one tumor.
I have a question about taking care of a young kid during chemo alone for a few weeks. I haven't started chemo yet but in the middle of my chemo, I need to be alone with my 5 ys old for about two weeks. I wish for good numbers of white cell count during that time. Is it doable? I know many sisters are taking care of a few young kid by themselves but there are help from husband when needed. I will have to rely on friends if anything wrong happen with me. A little scared. Any advise would be appreciated. Thanks.
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Lady M - Did your BS say how often they see stage 1 come back systemically? Just curious. My Onc and surgeon's do not say much, but did say a mastectomy does reduce the numbers a few more percentage points as far as local recurrance or new primary. When they broke down the numbers for me they told me I had a 1% chance per year of a new primary in the other breast. Since I am hoping to live for a few more decades that does up my chances quite significantly so I chose a BMX.
I guess no matter how you slice and dice the numbers it doesn't matter - BC seems to do what it wants to do!
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meglove - I found chemo very doable with young kids. I have an almost 3 year old and an 8 month old baby. I did receive the Neulasta shot to help with my white counts - will you be getting that shot after chemo? My older daughter goes to pre-school and brings home all kinds of bugs - and it did not affect me at all. I hope the same for you!
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In_cognito,
Thanks for the information. How about fatigues? Assume no energy to read books with young kids. My daughter can read by herself for a while, then write, or draw pictures, hope I can still have energy to walk with her
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Meglove - I can honestly say I was not any more fatigued than the normal fatigue of raising little kids. I did make it a point to exercise everyday - maybe that helped fight off fatigue?
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Hi 30-somethings, and welcome Vis! I'm so sorry you find yourself here. But once you have a game plan in place, you will feel MUCH better.
My original tumor was way up high on my chest and was just under 2cm. I had it removed, (technically had a lumpectomy), then found out it was cancer. After more mammograms, and MRIs, we discovered that the left breast was chock full of other tumors (some smaller invasive tumors, and one 4cm DCIS tumor). So, for me, a mastectomy was my only choice. A lumpectomy on my tumor-laden left breast would have turned it into Swiss cheese, so I chose to have a bilateral MX. I didn't think the surgery was that bad, but chemo really knocked me on my ass! My kids were 5 and 7 at the time, so it was hard to do everything I wanted to do while I was going through it. I did have a lot of help, but it still sucked to have to miss a few of my son's football games because I was too sick. Just remember, this whole BC experience is challenging, but YOU CAN DO IT!!! Best of luck to you...keep us posted
Meglove, good luck w/ chemo. Maybe you and your daughter can watch movies together? That doesn't take too much energy!
Hugs,
Sherrill
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Ok, ladies going to talk with the onco tomorrow for the first time..Im hoping to get some answers and direction...
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Sherrill, yes watch movie together is one of our favorites.
Do you gals find still have energy to cook meals during chemo?
Moe, good luck with your meeting tomorrow. My onc started with BC 101 then when I started to ask questions using the knowledge I learned from sisters on this site, he is impressed. He insisted I should get connected with local cancer society too. I have heard they are not quite as helpful as this site. But I plan to attend a look-better (?) session organized by local cancer society.
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Hi redninrah, Lady M, Alyad, and Sherrill - thank you so much for the support! I need it. You can all probably remember how it was during the first 2 weeks after diagnosis. It seems everyone's experience with this wretched thing are very different and everyone's decisions have been different. That is what makes this so difficult - there is no one sure, right path. I want to wake up tomorrow and the decision be made for me.
Lady M, I know there are many different options out there. Believe me, I am still going back and forth. I was originally hoping to have lumpectomy and radiation and be done with it but I had some very faint calcification type spots on the mammogram, so they tried to do a core biopsy to see if they were cancer though everyone who looked at them thought they looked completely benign. But since they were there, they could not be ignored. So, I had the biopsy because they are so faint and scattered, they went in blindly and were able to get 4 little samples. they came back negative but they told me they can't guarantee all of them are negative because they were not able to test all of them. So, how to live with this uncertainty? I need a little peace of mind, even if I know total peace of mind would never be possible. Hence me deciding on mastectomy. And since I am doing one anyway, I decided to go with BMX. I don't understand why your friend who had BMX still has to go for mammograms and MRIs. From everything I have heard, it sounds like the follow up is just in exam with BMX. I know you meant that lumpectomy and mastectomy have the same rate of survival over 10-20 year period (or the difference is statistically insignificant). So worries, I understood what you meant.
redninrah - thanks for sharing. Sounds like you are going through a lot now. It is so sad to have little kinds and to be dealing with this. It seems so unnatural at this time of life (though not sure it is natural for any time). I am awaiting genetic testing results as well but for me also, no FH. But I have a very small family, so who knows? I am really hoping the SNB is negative. This is my biggest worry right now. Everyone says it looks like it would be be so many people her with small tumors ended up with positive SNB, so can't be sure. I am so angry that they did not find this in March! I went in because I felt something but the mammogram apparently showed nothing. Before that, I had gone a few months back while pregnant and could only have an ultrasound but nothing. So, this was my third time going and asking for a biopsy directly this time because it was very easy to feel this time. And voila - I was right, unfortunately! You say you were angry - I think everyone goes through the anger stage, no? But you are on the way to getting better; hang in there. I have not even started yet....
Alyad - I am going to have TE and an implant after that. I am too skinny for anything else, I am told. And I don't want to mess with the back muscle. The SNB false negative sounds like a nightmare! So sorry you had to go through that! Why do you think that was? A question of the cut of the node or the competency of the pathologist in the OR? Good they figured it out afterwards at least. Yes, my PS also said that I would need implant in the good breast if I left it alone, so what's the point to mess with it surgically? I decided it'd better go.
Sherrill - you have a different story too. But you seem to have it behind you now? You guys are all inspiring and I hope I can get through this as well. I work full time and have 3 little ones. But I do have help at home. And my Mom will stay with me for a month after the surgery. I am not sure if that is enough or not but better than what some people have. I feel so bad for Meglove who has to have the kids alone while she should have some support. But we are all strong women and are dealing with difficulties on many levels, but we make it somehow. As long as I can convince myself I am not going to die quite yet, I will be OK.
Thanks all and sorry for the long post. I was at work all day and very busy, so could not do this earlier.
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Hi everyone, Just to quickly answer vis... I'm not sure why my friend has to have mammo/MRI every six months. Maybe just because even after bmx she had a recurrence. She had reconstruction so the implants block some of the tissue they need to be watching... maybe that's why they have to so closely monitor. Everyone else who had bmx with reconstruction... what kind of screening do they do for you? Or are you just done?
I'm so glad you're finding information and support! The most important thing is to choose what's right for you. You will get through this!!
meglove, I'm sorry you'll have to go through this with your little one. My boys are older, but they sure can be demanding. I did okay, and I was still cooking for all of us throughout my treatments (we're a family of six.)
in_cognito, I've been told that with stage I we have a very good chance of being cured and that for er/pr + the hormone therapy is about as important as the chemo. That was a surprise to me. So I'm on Tamox, but the gene test showed that I'm only an intermediate metaolizer- crap. Also I'm Her2+ which is kind of a mixed bag. It's more aggressive and more likely to recur, but I'm on the year of Herceptin and praying it's working it's magic!
All things considered, I was told I only have about a 7% chance of recurrence. I guess that's reassuring, except that when I took the "Breast Cancer Risk Assessment Test" it came back that I had a 0.3% risk of getting breast cancer in the next five years (based on my criteria before my diagnosis- haha!!) So considering that I had a 99.7% chance of NOT getting breast cancer when I DID get breast cancer I just don't believe any statistics!! As you said, it just seems to do whatever it wants.
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Vis-yes its been definately hard. But my kids inspired me, made me forget. I can not do the things i did, like shower freely with them running around, i feel they are too young to see the scar of a masectomy. the bald head, i accidentally left my head scarf off and the look on the girls face, scared them. Not doing that again!! So to me, im still living a private life with my own kids! But hair will come back now in a few months, and then im also opting for DIEP, next yr sometime, whenever my post rad skin heals which starts in JAN. I am excited to get that over and done with.
I am not the old person I was, in terms of the way I look, but Jan 2011 will be there yr that I get back to my old body (have to really push it at the gym, the steroids has made me gain 20pounds). But also, the way i eat, my kids eat, and just enjoy friggin life now!!!! LOL
They way i look at it, is we are lucky in many ways, that we caught this early, and more women are getting it, and the treatment is so much better, and women are surviing this thing. I dont feel scared anymore. But accept whats happened, and deal with it, and you know, use my advice/situation to help others overcome this at an early stage!
I used to breakdown all the time, at first, but i havent had a good cry for ages, maybe ive moved on and just not letting it get to me anymore. But i did definately find, that crying really helped for me intially to let it all out!
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Hello all! Hope everyone had a great Thanksgiving.
Vis - I too have small ones - a three year old and five year old. I am looking at my last chemo on Thursday providing all my bloodwork results are good. It has been a challenge but doable. I had surgery (mastectomy) in June and had someone helping with the kids for about a week. After about two weeks I felt pretty normal (with the exception of the tightness in my arm/chest area). I only had a single mastectomy and no immediate reconstruction which I know can be a little longer to recover from. Everyone is different. I tend to loose my patience with the kids more on the days I am on the steriods. I have learned to send them to their room if I feel like I am getting frustrated over those three days. Much better to do that then yell at them. They have been a part of eveything since the beginning. I talked to the pediatrician and he said that since they are a bit older they would see something was wrong. We told them that something was wrong with my booby and the doctors couldn't fix it so they needed to take it off. They have seen and touched the scars. When we decided to do chemo (it was my choice - 4mm invasion kindof a gray area, I didn't want regrets - two doctors said no chemo, 1 said chemo) we told them that I have cancer and explained it like a weed in a garden. Cut it out first and then treat with chemicals. I told them it was such strong medicine it would knock the hair right off my head. I tried to keep everything light and I laughed when I said, Can you imagine mommy bald?" I told them they could draw on my head for Halloween. They loved it! They sat outside watching as my husband shaved my head. They will be brought in after my chemo on Thursday to help me ring the chmo bell...they have bene there since the beginning, I want them there at the end. It has been a blessing to have them through this...they keep you going. They also have the best hugs and kisses! I am happy that we have been completely up front with them. They have asked a lot of questions and we have answered age appropriately and honestly. My five year old is very smart and we knew he would be noticing changes. It is so hard to decide what is best for you and your family. Do what feels right for you. Feel free to PM me if you like. It is a long road, but there is a bright light at the end. Prayers to you and yours.
Hugs and prayers to all,
Michelle
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Hi everyone!
Mommichelle, congrats on your last chemo! That's awesome for you!
Melanie, I had a BMX, and no mammos for me anymore. I do have to have a yearly MRI, but it's not for the purpose to monitor for recurrance. I am part of a study with the type of implants that I have, and the study pays for the MRI.
Vis, aside from taking Tamoxifen for 4 more years, yes, I am technically "finished" with treatment. I had my last recon surgery in January, finished Herceptin in September, and had my port removed a few weeks later. Even though I am basically done with everything, I like to check in here fairly regularly to see how everyone is doing, and offer support to those who need it. We all know how scary it is when you are newly diagnosed, and fellow BC sisters were there for me to answer questions and offer encouragement...I just want to do the same.
Funny story from Thanksgiving weekend...my poor husband was sick with a stomach bug from Thursday through Sunday. He was miserable and it completely ruined his weekend. I felt so bad for him. But at one point he said to me," Do you have any idea what it's like to feel sick and nauseous for four days straight?" As soon as he said it, he sort of chuckled and was like, DUH? Of course you know what it's like! Better, yet, I know what it's like to feel sick and nauseou for MONTHS at a time. Sick during both pregnancies the entire time, and sick during 4 months of chemo,during which anti-nausea meds didn't work
I don't mean to scare anyone who is about to start chemo. I think I'm an oddball that NONE of the meds for nausea did the trick. Many people manage just fine w/ the queeziness.
Hugs to all!
Sherrill
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Talked with Oncon today and found out that my genetics test came back negative, but im TN? Can anyone give me any information about TN and what that means for me...Did schedule an appt at UNC for next Wed! At least i have a small plan now, even if its a small one!
Dr. Mack mentioned clinical trials, can anyone tell me more about those and what they mean?
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moe, your bc is a particularly aggressive one which means you definitely need to hit it hard with chemo! Also, you may want to consider a PARP trial if you can get in one. PARP inhibitors are currently a big thing for TN bc. Great news on the BRCA test! Make sure you keep asking lots of questions so you're comfortable with all your choices.
Clinical trials can get you access to newer drugs and treatments. You may get the control group, but at the very minimum you'll be getting the regular, standard of care treatment and be helping the studies for future breast cancer patients.
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P.S. re: clinical trials- You get extra monitoring! Not sure whether you consider this good or bad
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thanks Lady Madonna...my thinking at this moment is whatever can help others and myself sounds like a good plan, but then I have those worries of the side effects and cost, etc...
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Hi All and thanks for being encouraging. Today is not a great day. Some days I feel I can do this and others I am down in the dumps. Isn't it strane to be waiting so impatiently for something you so don't want to go through?! I am talking about the surgery. Today I found out that at the time of my BMX and reconstruction, I will have a polyp removed from the lining of my uterus. That was found by ultrasound today and my doctor does not want to take any chances (especially since I would be on Tamoxifen for 5 years and it is know to increase the chances of endomitreal (uteruns) cancer). Not sure of it is cancerous at this time - likely not, but it is freaking me out. I think every cancer is out to get me now. I know, it is irrational but I can't make sense of everything that is happening to me yet.
My BRCA test came back negative today though. I still have to wait for the second aprt, which is available a few days later but for now, about 95% certainty that I am OK. Though like Lady_M, I seem to be falling in those tiny percentages of scary things where no one things they would fall in. But I guess it has to happen to someone.
Did many of you go to work while going through this experience? How quickly did people get to work after surgery? How about during chemo? I don't know if I will have chemo but am just wondering. Working helps me stay sane, it always has. But I know I have to be reasonable here...
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Michelle,
Thanks for sharing about your little ones. Mine don't really get anything yet. My oldest one is not even 5 yet. He get a little bit but not quite. Perhaps after the surgery they will see a difference and figrue out I am "sick". I told my oldest one when I first found out and was crying that I have a bad disease and sometimes, people die from it but that I think the doctors and surgeons will help me. He asked me if I die, how can he get a new Mommy. I asked him if he wanted a new Mommy and he said that no, but he thinks he would need one! They are so smart! He sure is right he would need one. Today something came up about dying again, and I told him that when people die, they can never come back again. He tried to tell me that skeletons move sometimes! I told him that is unreal and then he thought for a second and told me that he thinks the surgeons will help me. He always says he wants to be a surgeon. That is what he was for Haloween - how ironic.
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Michelle, Huge congrats on your last chemo tomorrow!! That's truly a day to celebrate
vis, So happy for your negative BRCA results! I'm sorry you're having a rough day. You will get thru this, hang in there.
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Lady M,
the tumor was about an inch from the center of the nipple towards the inside- 1.7 cm in size. On my MRI it said there were calcifcations towards the nipple from the tumor , so the nipple had to go as well. I was really attached my nipple and I often wonder if there could have been any way to save it- go with the lumpectomy first and see if I got clean margins, or neoadjuvant chemo to shrink it? A lot of work to save my sex life- but I wish I had asked more questions at the time.
False negative SNB s are somewhat common- 10-15% I think and DH was told there was a chance it could happen- but I celebrated the news on waking up from surgery and was thusly a blubbering mess after they told me two days later. I had the TRAM surgery and my stomach was in a lot pain- sobbing was wretchedly painful and then they decided that was a good time to come in and use my catheter removal as a training exercise... glad my DH stepped in - love him. They got some xanex in me and came back later.
Now i am actually glad the SNB was false that day- saved me from having a full ALND- I feel I would now have full blown LE had I had it- I have mild LE as it is from scar tissue-
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Alyad,
When you talk of false negative SNB, are you speaking to the down and dirty check during surgery? Are there many false negatives on final pathology? Just something I have never heard of and now a new little something to obssess about! LOL!
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Happy Friday to all and another big congratulations to Michelle! I see you officially made the big finish yesterday- woot-woot!!
More to obsess about- lol! I was just reading the study someone published about CoQ10, which I've been taking to offset the declining echo results since I've been on Herceptin. Now supposedly CoQ10 is another antioxidant that increases risk for recurrance- but only in post-menopausal women. The mixed info is so tiresome. Honestly sometimes I think I should just quit reading the studies. Well, I have to have a functioning heart too- it's six of one, half a dozen of the other. Lovely trying to figure out what's the first thing that might kill you when you're 39 years old!
Ok, I'm maybe a littttttle down today... I'm royally pissed off at breast cancer right now. My cousin is still in the hospital and my friend is having a hard time. I think I'm spending too much time thinking about everything, but how do you put it out of your mind? Hmmm... what I need to do is make Christmas photo cards, start shopping and decorating, etc. It's funny tho- everything I do I keep thinking "Last year at this time I didn't know I had breast cancer. My life was still normal. I still had my hair." I look like I've aged 20 years. My hair is sloooooowly growing out but I was used to the pretty wigs. I look old!! Man, I should be feeling thankful for being healthy instead of complaining- it's just hard not to miss the "old" me.
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The false SNB was just the quick check during surgery- it was the more detailed pathology check that came back positive, didn't mean to alarm anyone. Before SNB became standard of care, a lot of study was done to prove that in the vast majority of cases, if the SNB was negative, so were all the others.
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Lady Madonna,
Thanks for the well wished on chemo being finished. Can't wait to get through the side effects of the weekend and hopefully get on the way to feeling better. I am hoping that herceptin alone is not a problem, I would be so dissappointed if it was tough like the chemo side effects. Sorry you are feeling down. It is crazy how we can cycle from being so positive about our futures to so down. It is hard sometimes the more you read. It seems there is no sure way of avoiding anything. My onco told me at my last chemo that he figures with all we have done, my chances for reoccurance are about 1-4%. After reading so much on the boards you kind of start thinking - yeah right! I always have to tell myself those of us on the boards are a very small percentage of all the brave ladies out there who have been through it and now just living their lives to the fullest! I know what you mean about the life before and after the cancer. I am hoping someday soon it will feel more like our normal lives again.
Alyad,
Thank you for the clarification. Always so much to worry about, anytime I can cross something off that list, it is good.
Christmas parties all day with the kids this morning at my husbands work and then dinner with his co-workers. Hope I can drag myself through it all with a smile....I am a little nervous, haven't seen any of them since I started looking like a 60 year old man. I so want to look like myself again too. I look at pictures from last year and I am sad.
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