Ladies in their 30s
Comments
-
Hi Kiso20, so sorry you have to go through this with all of us. I am one of those with early stage who had a lumpectomy but still has to go through chemo. My understanding was that a different surgery would not get me out of it. My doctor explained that surgery and radiation are to treat local disease, and chemo is to treat systemic disease. Based on my age (33), my doctor strongly felt I should have chemo. I had my lumpectomy and oncotype score before making the decision, hoping everything would be mild enough to get out of it. My tumor was smaller in real life than it was according to MRI (1.2 cm with a secondary tiny tumor in the margins), but my oncotype score was high, so I had no real choice as my likelihood of recurrence was too high for comfort. There are new studies that older women with an intermediate oncotype may not need chemo, but it seems that for us younger ladies, you would have to fall in the low category for most oncologists to recommend against it. At least that is what my team agrees on. I can tell you that if you do end up having to do it, it was not as bad as I expected (I have my last infusion this week), but don't get me wrong, it still sucks, and I am looking forward to being done with this phase. I wish you the best and good luck with whatever treatments you have to endure, and with balancing all of this with your life.
0 -
Hi Kiso20:
I wish I had the radiologist you did! Have you met with an oncologist yet and had oncotyping done? Having a bmx does not guarantee you won't have to do chemo as there could be lymph node involvement or micrometastasis elsewhere.
0 -
Well ladies I’m certainly hoping I won’t have to suffer too much. I haven’t had an oncotype done yet (I don’t think?) It’s not that I am trying to avoid chemotherapy, what I am trying to avoid is having radiation and chemotherapy. Doing bmx will at least not require radiation (according to my surgeons). But I guess it’ll still be the oncologist’s decision. The problem with my health insurance is I get to see the fellows and not the attendings and they change every 3 months. I’ve gone through 3 fellows since I’ve had my MRI. It’s very frustrating and they’re not always very good with patients. This last one literally excused herself and left the room when I got emotional. And then popped her head in and told me to wait in the waiting room while she gets my appointments ready.
On a brighter note, my genetics counselor is amazing and has been a great support since my diagnosis. I got a call today that my genetic results are back! Meeting with her next week for the results. Same day as the plastic surgeon. The following week I’m meeting with the onc. Surgeons to plot a plan. I’m optimistic but I’m also a realist. Just so glad I have great support from family and friends. My friend has even offered to go sit in class and take notes for me just in case I can’t. I really hope I don’t have to drop this class. It’ll put off graduation another year. Agh!
Outandabout I’m so glad you’re almost done with chemo. It must be exciting! Let us know how things go
WC3 to be honest it was my nurse practitioner that sent me to have the mammogram and emphasized that I have family history. I was lucky that day my doctor couldn’t see me and she ended up seeing me. I’ve been telling my doctor for years I have pain in left breast and I have family history but he’d simply send me for routine mammograms without emphasizing family history. I’ve changed my provider and the nurse practitioner will Ben my primary now. I’m so happy! Seeing her this week to thank her
0 -
Kiso20:
I understand not wanting to delay graduation but trust me on this; as long as it's not a financial burden, it's usually better to delay graduation and take the class when you can do well in the course than to stay in the course when you can't do as well as you otherwise would have. If you are in the U.S. cancer is a disability under the ADA and your college/university has to provide accommodations. If you are passing your courses and need out of them due to cancer related issues, they have to issue you an "incomplete" or allow you to drop the course.
If you wish to remain in the course but can't attend, as a disability accommodation you can have them video record the course or video conference/Skype the course or whatever. You might be able to arrange this through the professor...it helps when they are onboard, but the school is legally required to provide you access to the course material.
I highly recommend you utilize the services they are obliged to provide you with.
0 -
wc3 wow thank you so much for the information. I will go there today and see what my options are
0 -
Hi Kiso. Not to discourage you, but you may still have to do radiation even if you have chemo and a BMX. If anything is found in your lymph node, they are going to recommend radiation. Especially at our age. I am going through it right now after 5 months of chemo. So far so good. I thought I wouldn't need it, but there were microcells found in 1 node.
Let us know if we can be any help as you start this journey. Happy to answer any questions!
0 -
I had my last chemo yesterday! I teared up ringing the bell on the way out, which I did not expect. Of course my husband got it on video, lol. Today is my good day as I am still on all of these steroids and long acting nausea medications. I got some yardwork done and will probably spend the rest of the day getting other housework and chores done. Then my neulasta injector will go off this evening and then side effects will probably kick in tomorrow. I already am back to having no taste buds, that was quick this round. I had noticed increased fatigue and shortness of breath while running during my last round. My NP said my hemoglobin and hematocrit are gradually trending down but still near normal. It could be that they are lower than I am used to or just from chemo in general. She says a lot of people have it the worse at the end because it all builds up, so we'll see. I have an appt tomorrow with the radiation oncologist, we'll get a plan going to start that within 4-6 weeks.
0 -
out_and_about, that’s is amazing CONGRATS!!!!!!
0 -
out_and_about:
Congradulations on finishing chemo!
0 -
Valentina7, I'm a little late in replying to this, but I wanted to sympathize with your situation! I am 31 with no kids, and I am supposed to take Tamoxifen for 10 years, however, my oncologist said it would not be very risky or unusual for me to take a break from the Tamoxifen to try to get pregnant. To be safe you have to go off for a certain amount of time (I think 6 months or more?) before you try, but he said he knows plenty of patients who have done it, and everything turned out just fine. Especially if you had an early stage/low Oncotype score. Your oncologist may advise differently, but just letting you know it might not be hopeless!
0 -
Good news everyone! I met with my radiation oncologist yesterday, and I am a candidate for a shorter radiation protocol, only 3.5 weeks instead of 6! He seemed confident that the side effects from this will be minimal compared to surgery and chemo. He even said that if I am running through chemo, he doesn't see why this would stop me. I have an appt on August 29 to get prepared for radiation to start. I think I may be done with it by October. He said I may have a few more weeks of fatigue following that. It is a nice change to hear something positive about this for what feels like the first time since last winter. I feel like every time I think I know what I am up against, I get another unpleasant surprise.
0 -
thank you very much laastra !! 😊
out_and_about happy for you
0 -
I just turned 39. It's been nice to read everyone's posts and know there is a community for younger women with cancer. This has certainly been an unexpected adventure this summer. I randomly found out I had widespread DCIS in my left breast. I had a bmx about a week and a half ago, waiting further tests, and will be planning next steps in treatment. It's going to be challenging to sort through next steps as I have a mix of good and bad factors to sort through with my medical team. A tiny invasive tumor was found (just 4mm), clear sentinel node, and clear margins. But the tiny tumor was mighty and has a number of unfortunate characteristics! So, we'll see. I have a really supportive husband and active, wonderful toddler son. Nice to "meet" you all!
0 -
It's one month off tamoxifen before trying to conceive. To give you some hope my fertility specialist said my FSH was too high to even be a candidate for IVF, my oncologist said miracles happen and let me off tamoxifen to try and my baby boy is sleeping upstairs right now. ♡ Good luck ladies!
0 -
oh clarrn thank you so much for sharing. I am so happy to hear good news.
BT39, sorry about your diagnosis 😐. But remember you are not alone! Keep us posted.
0 -
Update: My Oncotype is really high: 54. It's good the tumor was 4mm, but with a grade 3 and all the other concerning traits, I'll likely be doing chemo, and endocrine therapy, and looking into ovarian suppression. I learn more about options tomorrow. Has anyone heard positive stories of women under or around 40 who had a high Oncotype, grade 3, and generally a more aggressive small tumor with no node involvement initially who didn't get a reoccurrence or cancer that showed up elsewhere a few or many years later? I've had a hard time finding those stories! All the best to everyone.
0 -
BT39, I'm not really the success story you're looking for since I had a local recurrence, but I just wanted to offer some reassurance that your impulse to hit the cancer hard is probably a good one.
My original tumor also had many concerning features, but my original doctors treated it more like an "ordinary" breast cancer. Big mistake! My cancer did not behave in the "normal" way at all. It wasn't until I transferred to an NCI designated, comprehensive cancer center that they got things under control. Please consider getting an opinion from an NCI cancer center if you haven't already. I think some of us younger ladies with more aggressive cancers need that extra expertise, and we probably need to be more aggressive with treatment.
I'm glad yours was found when it was so small, and hopefully you'll be that success story. :-)
0 -
Hi all, I was 31 when diagnosed in March, I'll be 32 the 22nd this month! Yay!! 😁 I have a question within our age group is anyone else struggling with the idea of getting reconstruction done? I am 50%no,25%maybe 25% why are u feeling this way?? I had a really rough time with complications from my BMX. It does feel free not wearing a bra, and sometimes just putting my bra with my Ameona pads in is perfectly fine they make me feel like hey this isn't so bad. Any inputs? Thank you
0 -
whateverittakes- I was diagnosed in April at 33, I’ll be 34 next month. As soon as I knew I have having a BMX I knew I’d have reconstruction. I want to feel as whole as possible when everything was done. Boobs arent everything but they were still a part of you and there is no reason you should feel bad for wanting to replace them, or not replace them. Wish I had more of an option to share with you but I didn’t feel torn about my decision. Maybe look at it this way, if you go through the reconstruction now you can always change your mind and have that reversed. If you don’t do it right now and decide later you’d like it it will be much harder to do it. I wish you luck with your decision!
0 -
Whateverittakes:
I don't really like the idea of it. I just had a consultation with the cosmetic surgeon and apparently I may be a difficult case but I am a straight, single, still young and would like a husband at some point and the reality is that most men would not consider starting a relationship with a woman with no breasts, and most of the ones who say they are open to it would actually come to realize they have a problem with it. We can think negative things about men for prioritizing breasts above women as people but men's relationship with breasts are deeply engrained in them by evolution and that they want women with them is just a reality women in my situation have to face.
But if men didn't care or I did not want one in my life, I would probably not have reconstruction.
0 -
Whateverittakes, I have similar torn feelings. But my breasts are still in place... and I must admit I don't like the idea of them staying. In the whirlwind after my dx I was not able to decide and my doctors were sure about lumpectomy. But after op, it was discovered the tumor was larger than they thought and no clear margins. I should have had MX at that point, but had lumpectomy again. Also, I wanted to get to chemo as soon as possible.
W3C has given some very good points to think about. You don't say where you are in life and that may be a part of deciding. W3C's situation is very different from mine, so I am going to describe where I am to give another viewpoint. I don't think I am too atached to my breasts, but then they are still in place. I have a loving husband and 2 small kids. I am a worrier I would say. At this point I want to do BMX after chemo, but don't know about the rest. I'm like 50% going flat, 30% reconstruction, 10% I-don't-want-to-even-think-about-it. My breasts are very small to begin with... So I think if I were flat, people won't notice any change, at least not at the first sight. The surgery without recon might be easier for me as I need to take care of my kids. The recon can be done later, even years later, if I decide so. Well, I really don't know yet.
I have bookmarked a nice fashion blog by a woman in situation similar to mine - age, husband and small kids. https://leavemebreastless.com
The decision is so hard and I'm sorry you all have to do it. we all.
0 -
Thank you ladies! I'm married, been with my husband since high school. (16). We have 3 wonderful children. I'm also 14 hours from all our families. To be honest they have never visited us here. In. 2015 & 2016 I had a lump for over a year going on 2 in my breast, I went scared oh it's just a cyst he done a ultrasound I requested they said all normal just cyst lay off the caffeine. Flash forward to Feb. Of this year I had moved to a new state my breast began to be horribly painful, like something was pulling it inside my body. He said cyst without any exam. I went back 4 days later because my breast changed one was huge one was small (I'm a normal 38 C), they was purple, hurting and right then I knew I told my husband when I woke up I know I have breast cancer and I'm going to the Dr. He never looked at me crazy but I'm sure he thought what has she dreamed lol. Anyways, he listened gave me a mammo & Ultrasound, waited 3 weeks for a biopsy & was givin most of my information in March 4/9 I found out my stats. I was set on implants if I needed it. I had a MRI, seen the oncologist she said if you don't have a double you will be in here within 6 months with it in your right. I had a nipple & skin sparring BMX, that failed on the cancer side, go back in to surgery again to remove everything. I think I've just scared myself, then I think of something in my body that could bust or harm me. I have EDS so the PS said I was going to be a complicated case & to be prepared for it. But I also feel kinda free without them. My husband supports whatever I decide. I feel like I lost alot of time we'll the whole summer I didn't have surgery until June & July with my kids, now school is started & I don't want to miss out on the upcoming Holidays. I think I'll just keep thinking, and one day decide. You said I have plenty of time. I'm not ashamed or anything for my husband to look at me, I look at them as my battle scars. Best Wishes & thank you all for showing me I'm not the only one feeling this way. SA
0 -
Whateverittakes: I didn't have reconstruction done and I'm very happy with my decision. I never think about it and love not wearing a bra! Everyone is very different when it comes to this decision for sure though.
0 -
buttonsmachine: Thanks for your reply. I am at a NCI-designated cancer center. Yeah, I think sometimes how a cancer behaves under 40 is hard to predict for sure. What size was yours when they found it? It does look like you did TC x4 right away though? It was nice to hear from you!
0 -
whatever it takes- my implant in my cancer side got infected and had to be removed. (3 years ago!) I have all sorts of weird scar tissue from the open wound healing. I am probably going to get reconstructive surgery (flap because they don't think another implant will work due to the radiation) because being lopsided is hurting my back...but I am so hesitant about going back under the knife when I feel otherwise pretty great. Also I have a 6 month old so I am trying to figure out the timing. My husband doesn't care either way. It feels weird to me if he grabs the remaing implant intact side, so it's not like he gets anything out of it. So I get how hard the decision is. Good luck!
0 -
BT39 - I had a small, high grade tumor with similar characteristics to yours but with 9.5 mm in my lymph nodes. Diagnosed at 30. I am now 35 and had a baby 6 months ago with the blessing of my oncologist who specializes in young women with breast cancer. Back on my tamoxifen again and doing great! Many of us who are doing well tend not to be on here often, but we are out there.
0 -
BT39, I'm glad you're at a good cancer center. My cancer was about 1.6cm at initial diagnosis, and I did do TCx4 right away. I had an unusual situation, but basically my first biopsy dragged cancer cells around in my breast, and those cancer cells continued to grow after my lumpectomy, and after my mastectomy, and while I was on chemo, but we didn't know that at the time. I had clear margins after both surgeries, but my cancer kept coming back.
Anyway... after I transferred to a better cancer center they figured out what was going on and got it under control. I wish I had gone sooner! That's why I always advocate for young women to be treated at NCI designated, comprehensive centers. If my first Drs had been able to figure it out, it would have saved me a lot of suffering, and my prognosis would be better! But my situation was just out of their depth, and it is what it is now. I just have to move forward with where I am.
Hope you are doing well!
0 -
buttonsmachine:
Sorry to hear that your cancer got seeded during the biopsy. Was it a needle biopsy?
0 -
Yes it was - needle core biopsy. MD Anderson did a really interesting study on this recently. Basically needle seeding is rare, but it does happen, and mostly seems to be a problem for those of us with very aggressive cancers.
0 -
Buttonsmachine, I agree that there is something about the biopsies and seeding. My initial scans showed only DCIS, then I did the biopsy (vacuum biopsy with one needle and normal fine needle biopsy). Coincidentally after mastectomy the path report found two small IDC spots (0.8mm and 0.3mm) exactly where the biopsy needles went in. My theory is that my DCIS became invasive from the biopsy. There are theories that surgery, biopsies etc contribute to movement of the cancer cells. Hence we throw every treatment at it.
Hugs to you and everyone else on this chat.
0
