Ladies in their 40s
Comments
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Hi Applejuice -
I think you have to wait and see the post-surgery pathology before they'll really know about chemo and radiation.
I did a lumpectomy so I had radiation. But even though I was 39 at diagnosis, I didn't have chemo recommended because of the low oncotype.
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Applejuice it is hard to not get ahead of yourself. Since you are such and early stage having a test like oncotype will help with that. I was diagnosed and 47 and did genetic testing prior to my surgery since I had family history and I felt like those results would help me decide on what type of surgery. When the high risk genes came back negative I went with the partial mastectomy with reconstruction at the same time. I always thought I would go the mastectomy route, but my doctor was great on educating me on the all the possibilities. Of course after it was out and we chatted about the oncotype test I thought great this will be high because so far my cancer hand hasn't been too bad (and I had an MO that kept coming back to chemo). But it came back low, a 9. So once I wrap up radiation I will most likely be doing tamoxifen, right now I'm switching MOs to someone who only deals with BC patients.
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Welcome Applejuice. Sorry you had to join this club, but this site is amazing....full of information and support. Sometimes after surgery your MO will order an Oncotype test to see how much you would benefit from chemo. My score was low so no chemo just radiation and estrogen blocker. ABS said that if I would’ve had a Mesec to me I wouldn’t need radiation. I think I might’ve ended up needing radiation anyhow just because I had it a little tiny bit in my lymph node. I had something called a Licap reconstruction lumpectomy which didn’t turn out well. If I had to do it over again I would have a BMX but that’s just my personal opinion from my personal experience the way mine turned out.
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Hi, I’ve been posting elsewhere on this site and just recently found this. Glad to find all of you...
I was diagnosed at 41 and finished my 12 Taxols and UMX surgery. I'll get my 4 ACs and then have DIEP flap after that (no radiation). For those of you who have done DIEP flap, how was your recovery compared to the mastectomy? Personally my recovery from mastectomy has been fine, and I have had C-section before which wasn't bad. Is DIEP flap much more difficult to recover from for us “younger" folks?
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Hi Brink,
I just recently (Dec 11)had a stacked diep flap left side. The abdominal site was not bad for me. It is a much larger incision than a c-section. I had no problem with c-section but you know once they hand you the baby you kind of forget about the c-section. Even with the flap surgery the abdomen has healed quickly. No complications at all.No muscle involved. I took the drains out myself because it was Christmas and I didn't want to wait. I experienced more pain in my breast area than abdomen but I had a lot of radiation. Radiation was absolutely necessary for me but it is the gift that keeps on giving. Doing only one side left my other side free to help with mobility. I suppose the difficulty is simply having two surgical sites. I will go back for stage 2 in a few months. All the best to you.
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Hi all!I've been away from the website for awhile, but I wanted to check-in with what it feels like from the other side of diagnosis. You can see from my bio that I've done it all (Chemo, surgery, radiation, surgery again)! I took the nuclear options on everything because I have a PALB2 genetic mutation (pretty bad), a grandmother who died of breast cancer at age 43, and my dad has been battling bladder cancer for 8 years. I'm glad that I had a bilateral mastectomy with no reconstruction because it let me focus on healing, but it has been a long-road, and it still remains the thing that I feel the most. I'm working with an amazing massage therapist and Physical Therapist and I think that has done wonders! My biggest piece of advice is do your stretches!!! I had my final procedure in December and I'm looking forward to not having any treatments for a long time to come!!!! I do have moments where I can forget all about cancer and worry about the mundane and I hope that those moments will grow more frequent. I'm happy to answer any questions about any of my treatments!
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johnsmom68 - Thank you for your response! How many drains did you end up having from the one-side DIEP flap? I have a drain vest but I wonder if I’ll have enough pockets for all the drains I’ll have hanging everywhere...
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Hello there Brink,
I just had two. But I only had my left breast"flapped". I saw where this one lady used a lanyard to hold her drains while she showered. I thought that was a good idea. I would think just a drain for each site.
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Hi Brink,
I had a DIEP flap a year ago at the same time as my UMX - yesterday I wished my new breast happy first birthday
. I posted throughout on the 2018 DIEP thread, there's lots of info on their from women who've been through it, I would check it out! It's not been an easy road particularly, but overall I'm very pleased with my DIEP decision and outcome. I was in really great shape going into the surgery, still carrying around too much babyweight which was part of what made me a good candidate for removing fat from my middle, but otherwise I had been working out and lifting weights and stuff very regularly for almost 2 years, and I do think that plus being younger probably helped. After a year of cancer treatment I'm hardly in shape at all, and looking forward to working through hopefully my last round of PT and beginning the fitness journey again. 0 -
Hi ladies
I am 43, started on Lupron and anastrozole 3 weeks ago. The goal obviously is to put me into menapouse. Well, I ended up having a full blown period today after spotting the last 2 days!:( As you can imagine I am both disappointed and scared that somehow Lupron is not working. I emailed the MO but havent heard back yet. Any experience with this? Maybe the remnants of the remaining stuff just getting out?;) I might have to get an oomph if I will still get my periods.
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Hi Nomadd, my MO said that it is normal to expect spotting and even a period in the early days of ovarian suppression. I'm on Zoladex and did experience spotting and a period in the first two weeks. Thereafter it stopped. Nothing for the last 4 months.
All the best!
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I am back with post-surgery pathology and I will say, what a bummer! Thank you Salamandra and Mymomsgirl for warning me not to jump ahead before the results.
From the original IDC pure tubular 11mm of the former biopsy report (from a different lab), i now have a bit of a checklist:
multifocal, 3 foci of 11 mm, 3.5 mm and 2 mm Grade 1, Stage 1A, no specific type
DCIS of 45 mm Grade II
Sentinel negative
Overall cancer being staged as IDC 11 mm, stage 1A
I asked about Genotype test and the SO said since it is 1A stage, it is not relevant to order it, as it will be very low. I will follow up with MO and determine more details then.
What i am trying to determine, and wanted to ask you ladies if you know, whether there is a possibility to go back to the "after mastectomy" pathologist and ask more details about the type. I read some studies about Pure Tubular types and in general they do not spread, are very slow growing, with almost 0 recurrence. This would look like a better cancer hand and definitely give me a different mind set, regarding the treatment, comparing with last week, when i was wondering how "easy" is treated an early stage "only" with hormone therapy!
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Apple juice- I’ve never heard of actually speaking with the pathologist but would recommend writing down all of your questions and concerns for when you meet with your MO. Having a list helps tremendously while you are in one of the worst meetings of your life.
My BS did an amazing job and did her best to prepare me for what was likely to come next but it’s ultimately the MO who prepares the treatment plan recommendations. BS thought it was unlikely I’d need chemo but MO wanted to run an Oncotype, warning that if it came back in mid to high range he’d recommend chemo. It came back on the low end of mid range. I did get a second opinion which helped set my mind at ease.
I’m not one to study all the case studies though, so didn’t have as much knowledge going in but did have my list of questions. And usually more during the appointment and even more after! Bottom line, don’t agree to a treatment plan until you are comfortable with it.
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Hey Applejuice! Sounds like good news!!
My breast surgeon was super confident I wouldn't need chemo and told me I'd only get the oncotype if my sentinel nodes came back showing signs of cancer. But then they turned around and wanted the oncotype anyway! I asked the MO and she said I must have heard wrong (I didn't, and my friend in the meeting heard the same). According to the MO, she was running the oncotype *because* the nodes were negative, and if they had been positive, she would not want an oncotype because she'd want chemo for sure.
So I dunno - my impression is that use of the oncotype is somewhat still in flux, even within a cancer center like MSK, and that breast surgeons are experts in breast surgery and somehow got stuck in the introductory educational role for new patients, but ultimately it is the MO who is the expert in non-surgical treatment. I'm guessing your MO is going to be the person to ask more about your type of cancer.
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My MO was the one who made the decisions regarding testing and treatment. Before my surgery I was Stage 2 with two tumors, grade 1 and 2. After surgery I was Stage 1 with 8 multifocal tumors and node negative. BS didn't think I needed the Oncotype but MO said differently because of my age 46, premenopausal and having two 1.9cm tumors. MO ran a MammaPrint which came back high risk Luminal B. Chemo was on table which I thought I had avoided.
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johnsmom68 & 2002chickadee - Thank you! I hope my recovery will be just as smooth as yours!
Applejuice - I asked my BS and MO about my pathology results after the surgery, and emailed them additional questions as well. I would think your MO would have more ideas about treatment plans for the type etc.
On menopause, my period stopped right after I started Taxol and now that I've done AC #1 I started spotting. Has anyone had their period come back during AC?
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Nomadd-
I had my period return after my first Lupron injection, after about 5 months absence from chemo. After the second injection they said I would now be post-menopausal, sometimes there is an estrogen surge after the first shot. That is indeed how it played out. I think it's a bit of a bummer because it ramps your estrogen higher (which feels so good!!) just to drop you off a cliff. I'm 5 months into lupron and 2 months into AI and most of the SE's have calmed down a lot. It does get easier!
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Nomad I had the same thing at about the same time as you. I had a very long conversation with the pharmacist, who had a detailed explanation about how the timing of the OS shot relative to your cycle can create a period. I had spotting 3 months after that, but my MO checked my estradiol and is not concerned. She said the spotting is due to a thin uterine lining (typical during menopause). Have to admit it makes me uneasy though. Sometimes consider switching to OS with Tam for peace of mind.
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CC2016-noticed you referred to your diagnosis as a perfect grey area. Mine was like that as well at each step, including the endocrine therapy. Curious if your MO gave you a strong recommendation for OS with Exemestane. Mine gave me a choice between that or just tamoxifen and very little guidance about how todecide between them except to say that OS gives you a slight edge (perhaps 5% benefit). Downside is I still have bad hot flashes 6 months in. Was your doctor any more definitive?
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Walden1 - hahaha, no! No precise or concise recommendations, ever! My original MO said Tamoxifen would be fine for me, no need to shut down ovaries. The AIs are good but he didn't think they were necessary. I had an annual GYN appt before starting chemo and she was the one that originally said anything about my ovaries being shut down or removed! Finished chemo, then rads and went back to MO for a checkup and prep for starting HT, turns out his office was being closed and I'd need to find a new MO but was still saying Tamoxifen was the best for me. The new MO highly recommended AI and ovary suppression (and said she would have gone with a less strong chemo...too late for me, but I had gotten a second opinion that said AC+T as well, so I'm actually okay with it). It took her a few more months to admit that she recommends this course because my ER+/PR+ was a very high percentage-like over 90%, so it made more sense to me then too.
I was on Tamoxifen for a couple of months, went off for a couple of weeks, started Zoledex and Anastrozole. Did that combo for about 6 months, then had my ovaries removed. Had some strange issues that sent me to several specialists just to make sure everything was okay and every one of them chalked it up to the AI. Switched to Exemestane a few months ago and all seems to be fine now! I've never really had hot flashes - have been warmer than normal but nothing horrible. My mom mentioned that she really didn't get hot flashes during menopause so it might be more genetics in my case. You can always ask to switch the AI to another kind, they all have different side effects so you might be able to find one that works better for you. I switched because I was getting strange pains in my abdomen (originally thought it was the Zoledex/ovary issue) and then my calcium levels started rising a few months after the removal and then the pains started again too. Turns out there is a 2% SE chance of hypocalcemia on Anastrozole...won that lottery too. Still don't have an excuse for the pains but they're gone for now.
Don't be afraid to try something new, including MOs if you're not happy! There's plenty of options out there. Many may not be worth trying, or work against other meds you might be taking, but your MO should be willing to try more options since you'll be on it for so long. Good luck!
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Hi!
Im 44 years old and diagnosed right after Christmas, had lumpectomy on Jan 30th with clean margins. Stage 2, mass was one and half inches, two lymph nodes removed and those were cancer free. Has not spread, Oncotype score is 22, dr recommends 4 weeks radiation with boost towards the end. No chemo, but recommends Tamoxifen and lupron shots for 5 years. When the Dr told me I didn't need chemo I was so elated and grateful that I was like bring on the hormonal surprising pills, lets do this. I admit I was very scared to get chemo, so I thought it was a no brainer, but now that Im home and have time to let it soak in I'm starting to get nervous about the side effects of the Lupron shots. Can you ladies share your experiences. If I can be completely honest my fears are mostly vain ones; will I still look youthful, how dry is dry in regards to the vagina. Of course I'm grateful to be alive so please forgive me for sounding shallow. Should I have just done the chemo instead? Forgot to mention Her 2-
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Hi Toyamjj,
My understanding is that they're starting to think that in premenopausal women with oncotype scores like yours, any seeking benefit from chemo may actually have been from the incidental hormonal/menstruation suppressing effects of the chemo. So your doctor's plan makes a lot of sense to me. It may protect you longer and more effectively than chemo would've.
Also, some women sail through chemo but some don't, and there's no way to know which you would've been. With the lupron shots, too, if the side effects get unbearable, you can stop.
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Hi Toyamjj-
When you are young and hit with this disease, it’s common to worry -Is this gonna turn me into a little old lady? To answer you questions- your skin will be different, most likely dry. Use old lady moisturizer! I switched to Ponds sensitive skin moisturizer and my skin looks great. I actually had a nurse ask me how old I was and then what I use on my skin. I could never use anything that thick and rich before! And a gentle cleanser too. The first few months, things were a hormonal mess- acne, facial hair. Then it stopped and things have been better since.
As far as vaginal dryness- I learned on this site to use coconut oil every day. Before you need it. There was once or twice where dryness was a problem, but that was also near the beginning.
Eat reasonably healthy, take care of yourself. Give things time to settle and your body to adjust. Start taking care of things Before they become problematic.
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Toyamjj - it’s really not a decision of chemotherapy OR hormonal therapy, it’s more of an AND. I’ve never heard of a doctor saying no to HT when the patient is hormone positive. I have heard of patients declining the advice of doctors and researchers and not doing hormonal. The way I was told in a super simple explanation was you get radiation to kill your current breast cancer that might still be there after surgery. You get chemo to kill any possible cancer cells that have moved elsewhere in your body. If you are hormone + you get HT to stop any H+ cells from forming again. You WILL have side effects from everything. The degree of severity is based on your body and within reason, your mind. If you go in thinking “this is going to suck, I’m going to be miserable for years” it is going to be horrible. You can be realistic.. “this is going to suck, but I can do it and be done by x” and really manage better. There are many versions of HT and your doctor should be willing to work with you to find the one that works best for you. I’m almost 2 years in and on my third pill, thinking this might finally be the one. In the end you have to make peace with your decision, it’s hard but as simple as that.
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Hi Toyamjj,
Super normal to be afraid of getting old from these treatments. I had chemo and was more afraid of the hormone treatments because they seemed to stretch on into the future forever. I had a few months of rough side effects but most have subsided. Still with me are bigger mood swings, vaginal dryness, my hair seems to have stopped growing back after chemo (it thinned a little, not noticeable to most people), and total lack of interest in sex. The last one bothers me the most! I'm considering trying some supplements for that, haven't gotten organized yet.
Overall, I definitely have feelings of -- this is so unfair to have to have all these side effects -- but when I step back from that it actually feels manageable and completely worth it in order to stay alive longer, which is the ultimate goal.
It was really helpful for me that my doctors kept telling me the side effects would get better with time. They were right.
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That is so great to hear @2002chickadee. I’m in the beginning stages of this whole thing (just finished 1st chemo treatment), and looking ahead to years of hormone therapy seems daunting. I’m going to take it one day, one treatment at a time, but your experience is heartening. Thank you for sharing and let us know how it turns out getting your libido back up and running. (That’s one of my fears!)
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ladies...did any of you have your period return after many years? My period stopped after my first chemo in 2015.. and never came back. Then yesterday out of the blue..BAM! Heavy bleeding. I have an ultrasound scheduled for tomorrow...but was wondering if this happened to anyone else?
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hi my doctor suggested I use this site for research and I just found the community aspect. I was diagnosed on 2/13 after a lump was found during a routine mammogram. I’m 41 with IDC stage 1 grade 3 estrogen positive progesterone negative and HERII negative. I never thought I’d deal with cancer at this age. I am scheduled for a lumpectomy next Friday (3/15). The MRI found no other spots on my breast but my lymph node is swollen. A biopsy came back negative on the lymph node but they are removing it anyway. My surgeon won’t say yet if I’ll need chemo but did say radiation for sure. Some days I feels like I got this i other days i just want to cry. Did many of you get 2nd opinions for surgery or just for the plan after pathology? I keep getting told to get a 2nd opinion but I just want this tumor out.
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Hi Rissy,
So sorry that you have to deal with breast cancer at this age. Welcome to the thread. Best wishes on your treatment and the lumpectomy. I also felt like I wanted it out as soon as possible. You may want to interview multiple oncologists, however. You will have a long term relationship with the oncologist, and it is really important that you "click".
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I was diagnosed with IDC at 41 as well. Usually they would assemble a team of surgeon, radiologist and oncologist for trestment plans. I went for a 2nd opinion who confirmed my initial plan which gave me more peace of mind. I do understand wanting it out ASAP. I got my 2nd opinion without delaying my treatment plan.
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