Ladies in their 30s
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Hello ladies,
My name is Erica, I am 35 and was just diagnosed a month ago with DCIS in 2 spots and IDC (appears to be stage 1) in the other. I am married with 2 children, 10 and 8. Having a BMX with immediate DIEP recon 1st week in December. This is a crap club to join, but I am grateful for the ladies on this board and the info they share and the inspiration and strength they offer. Looking forward to having this surgery behind me. Wishing everyone well in their journey.
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I am still poking around too, was diagnosed at 36.. I just celebrated my one year out september 10th !!
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I am 38 and have 3 kids(11,9 and 6) diagnosed January 2104. I have been on this website for a while but just found this thread. It's good to know there are others like you out there, even though NONE of us would want to join this club....I did TCHP every 3 weeks for 6 weeks(last treatment May 28th), had double mastectomy on July 10th, then 30 sessions of radiation. I am now taking a break before my delayed reconstruction starts.
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Haven't posted on this thread in awhile....I'm 34 diagnosed a little over 2 years ago TNBC. Had neoadjuvent chemotherapy....double mastectomy....33 rounds of RADS....Lat Flap on RADS side...and FINALLY had my exchange surgery with Fat grafting last week....It has been a long road but glad to be at the end. Good luck and prayers to all of you still in treatment!! Keep the positive vibes and you will be done before you know it!! Cherri
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Hi Ladies,
Joining this thread now as I just found it.
I was diagnosed in March 2014, two months after my 33rd birthday and four months after my miscarriage. I am married and I found my lumps by myself as we were trying to conceive again. I am married and I had an ultrasound a couple weeks after my wedding in 2013 on the same breast as I had a fibroadenoma (for over 7years) that I was keeping an eye on through yearly u/s, which came back clear. So when I found the lumps was about time for me to go for the u/s.
My diagnosis is stage III and grade 2, 95% ER+ and 85+ PR+. I did a round of IVF before I started chemo and I have 6 frozen embryos. I have completed chemo and radiation and currently on tamoxifen. I have been in chemopause for the last 4 months and not sure if it is permanent.
Ever since my diagnosis and as I was going through my treatments, the only thought that made me cry was not being pregnant (my expected due date was June 25, 2014) and having had a miscarriage (which save my life as I would found the lumps a lot later and given the high hormone receptor it would have spread).
I have been thinking about being pregnant a lot and carrying my own child but I am afraid that it might recur given that it grew so much during my first pregnancy last year. My hubby doesn't want me to get pregnant and my MO mention that if I were her wife she wouldn't want me to get pregnant (obviously not what I wanted to hear but at least she was honest).
I finished my treatments 2 weeks ago and trying to find a new normal and dealing with menopausal SEs.
It is sad of many of us and younger women have been touched by this disease!!! All we can do is through the treatments and try to prevent a recurrence!!
Lola
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Hi Lola....
I am 32 and also froze my eggs prior to starting chemo in June. I finished in September. I'm confused about all this menopause stuff. I am having night sweats and hot flashes. My Oncologist says "You're going through menopause". But the gynecologist and my surgeon say I'm not. I have no idea whats going on with me but I hope it goes away. My Oncologist also says to let her know if I start my period again because we don't want that and she will have to give me medication to stop it. All this stuff is so confusing. She says she wants me to wait at least 2 years to get pregnant. I would like to do it naturally but at least I have my eggs if I need them. Then I just have to worry about the cost of IVF because insurance won't cover that.
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FL, your period might come back. Mine stopped while I was on chemo but it did come back. Its not like it was before chemo but its there. Some times I get it and some times I might skip a month or two and if I do get it, its a light to moderate cycle. Went through the night sweats and the hot flashes and it stunk!
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FL, the menopause might be temporary. I haven't been to a gyno yet but I should as intercourse is getting painful and I want to know if the menopause is permanent. Funny thing is that I kept having my period during my chemo treatment until my second last chemo. If you didn't have FEC-D there's a chance that your ovaries might have been sparred. There's a blood test that can show how fertile you still are. If your ER/PR is - then getting pregnant might not be a dilemma for you. Is the 2 year wait counted from diagnosis or end of treatments?
Although getting the period might be a bad thing for us + hormone receptor ladies, I feel like I want it back. My MO might switch me to AI+ovary suppressant if the SOFT/TEXT results are favorable there is no escaping the menopause.
I know IVF costs are very high, I cried when I found out that I will have to pay to change the birth certificate of my future child to show my name as the mother. We will have to go the surrogacy way in about 2 yrs if everything goes well and I am NED.
The clinic I went had discounted price for the procedure for cancer patients. Perhaps you can find something like that and the cost it's tax deductible (at least here in Canada).
Fingers crossed for healthy babies post bc.
Another question related to recon, which type did you ladies choose?
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my period stopped after my first chemo treatment of TCHP in February. I just started my period again 8 months later! My last chemo was May 28th. I am done having kids so could have gone without starting it but hope this gives some of you ladies hope that things will get back to normal in your body:)
I am having the latissimal flap reconstruction, hopefully will start in January.
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interesting to hear that some of you have been told that it is not necessarily a great thing to get your period back if you are ER or PR +. I am positive and I feel like when my period came back both my oncologist and gyn said it was a good thing. We had talked about shutting my ovaries down when I started tamoxifen but only because I tested positive for a gene that could put me at higher risk for blood clots. So much conflicting information out there...
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Hi Ramols,
There is now much more evidence that shutting down the ovaries along with either Tamoxifen or an AI works better at preventing recurrence in especially young women. I wish I had some of the links to the studies handy to share. But, you may want to bring this topic up with your onc. I could not go on tamoxifen due to a risk of blood clots as well. My MO would not put me on it. So, I had the bilateral salpingo-oophorectomy and went onto an AI. This was the easiest surgery I had. I do NOT have tremendous issues with hot flashes etc., so this was a relatively easy approach for me. I also happen to have a genetic mutation (which causes twins to run in my family), and my ovaries were already starting to produce eggs again a couple of months after the end of my chemo, and my period was about to return. I could feel the whole surge of hormones in my body. I am actually one of those people who feels better with fewer hormones, believe it or not. So, I feel good about the decision to remove those ovaries.
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Thanks for the info youngturk. I have an appt with my new MO next week (my old one left recently), and will be sure to ask. Not sure what they consider young - I'll be 40 in January... ;-) My gyn and I had once upon a time discussed an oopha since we found a lot of cysts on my ovaries. But they since resolved so we dropped the topic. Will be interesting to hear what she says about it all now.
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New to forum, 29 years old.
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The third arm of the SOFT/TEXT trial will be out this month. It is the part that will show the tamoxifen alone portion of participants. I am starting on just tamoxifen and hoping NOT to have to shut down my ovaries. Got my period back 5 weeks after chemo and everything is better with hormones for me (sleep, weight, SEX, mood). And still want to have a baby so my 3 year old has someone!
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hi Clarrn,
I'm also doing tamox-only for now. Curious about SOFT results for sure. Not planning any babies, but also don't want to shut down ovaries totally unless I have to (and if I have to I will)...for all the reasons you say!
Also, I am doing well on tamox - no real SEs other than night sweats. So I'd rather not mess with that...
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Hi ladies, I'm not that new to the website, but just found this topic. I'm not on my 30's, but I am young.. 25, was 23 when first diagnosed... I also stopped having my period but haven't had any hot flashes yet. when do that usually start? I have 8 eggs frozen, just in case...
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Hi MarcelaBR,
Sorry you had to go thru this soooo young!! It's so unfair!
My hot flashes started with my last chemo (a few days before it) and it's been 4 months now.
I had my follow up with my MO and she seems to be pro Tamoxifen alone and I got a sense that she doesn't think that being that aggressive (ovary surpression) is worth the risk. Not sure what to think now, I guess will wait for the SOFT results.
Is any of you taking Vit D
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marcela, I had hot flashes all through my chemo treatments.
Lolis, I am getting my Vitamin D level drawn in a couple weeks so that will determine if I start taking it
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I am taking 2000 i u VitD every other day and 3000 the others. My MO was fine with that. Said it shouldn't
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Vitamin D is very important in breast cancer treatment. I struggled throughout my treatment to keep my levels acceptable and had to do many rounds of the mega doses - that are prescription only. Every time I dropped back down to the over the counter 2000 iu's a day, my levels would have dropped by my next blood test. Fingers crossed - finally seem to be maintaining with the 2000 iu's daily.
As for the SOFT study - I talked to my MO about it. She was hesitant to say one way or the other what we might do with my ovaries until the results come in. I think my cancer center is a bit hesitant to push young women into early menopause as the risks could outweigh the benefits of the treatment. Guess we'll all have to wait to see what the results say.
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hi ladies
I am 36 I was diagnosed with Dcis she might was 29 I had a mastectomy on the right breast took tamoxifen for 5 years as soon as I came off of it not even a year later I felt a lump under my armpit the same side I had the mastectomy and biopsy came back positive now this time I have to have 6 rounds of chemo tch then they suggest radiation Im still in shock all over again. Everytime I go to the dr to have a test done they ask me what am I doing there ugh I didn't ask to be here then my mom went with me to oncologist I'm checking out the lady thinks it for her im like really this is crazy cause you know now cancer effects people of all ages. I'll be glad when chemo is behind me.
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Hi Ladies,
New to the group......have posted something similar to other forums but maybe someone here can help!
The short story is......diagnosed pretty young (29), lumpectomy + radiation & have been on Tamo for just over 3 years. Up until now I have had mild SE, and my period never ceased (dammit). Now all of a sudden I am having major symptoms like being super weepy, lethargy, acne & major weight gain. I simplified my diet and increased my already moderate exercise routine - only to gain more weight!
Has anybody had a similar experience? Everybody (friends, family) I try to talk to about it says my metabolism is slowing now that I'm in my 30's. I want to slap them in the face! That can't be it. I feel like it sounds like estrogen dominance, and i am seeing my onc next month. But If anybody has any advice or experience I would love to hear it!
Thank you so much!
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Hi MissRose,
I have been on Tamoxifen for just 3 months and I have noticed the lethargic feeling (but it could also be because I finished the treatments about 1 1/2 months ago). I haven't notice any weight gain, I have lost weight since my last chemo. Sorry I can't be of any help.
Of the ladies that are on Tamoxifen, did you have any heart pounding/palpitation? I started feeling some this evening and have a squeezing pain in the throat when I take a deep breath. I come from a family of heart disease and had to go do ABC breathing while receiving radiation. Anyone with similar experience?
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Woo, yes, I read it and am really wondering if this is a choice I'll be presented with at my regular checkup next month. I have to say I'm not super excited about the prospect of even less estrogen than I already have, and am a little concerned about long term effects given family histories of both cardiac disease and osteoporosis... BUT it seems like I'd possibly gain 7-8% reduction in recurrence, and given I'm 100% ER and <10% PR, from what I understand, I have a reasonable chance of tamoxifen not working for me anyway, which makes me a bit nervous to not at least try the AI/OS route.
Missrose, I'd never had problems with my weight (literally could eat pretty much whatever I wanted), but a few months after starting tamoxifen I was gaining 1-2 lbs a month, then 1-2 a week (mostly around my middle
- ugh) until I really started decreasing portions and increasing my activity as much as I can within limits of my pain/fatigue/lymphedema. I don't have a solution for you, just wanted to say you're not alone.0 -
Floaton, may I ask why do you think you have reasonable chance of Tamoxifen not working? Would you mind sharing I ask as I am 95% ER+ and 85% PR+ and my MO wasn't too keen on changing me due to the limited data on the AI/OS.
Anyone knows if the SOFT/TEXT results are out yet?
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They were supposed to be release at the San Antonio symposium earlier this month. Found this online just now: http://www.onclive.com/conference-coverage/SABCS-2...
Not sure what this means to me since I'm not in the under 35 group but still pre menopausal. I'll be asking my MO at my next visit.
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Free webinar tomorrow about SOFT study results:
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Thanks for posting Ramols!
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I tested positive for a new gene mutation called BRIP1 in November. As you may know, it carries a elevated risk for ovarian and breast cancer. It is a fairly new gene mutation and there are not clear cut guidelines on how patients should proceed.
So, here's what has happened so far:
My mom told me she had the BRIP1 gene mutation and when I went to my OBGYN in Nov. he recommended that I see a genetic counselor. So, we mapped my family cancer history (high in ovarian and breast, especially on my maternal side) and she ran the genetic panel. So, like I said, I have this BRIP1 mutation.
Next- the genetic counselors recommended I see a gynecological oncologist. I did that, and she was very informative and we discussed options.
She said she could do a laproscopic surgery and remove the ovaries, but also mentioned the possibility of taking out my uterus as well. She said that way, I may be able to take some low dosages of hormones to help with the instant menopause onset (hormones are still very controversial too). She said this can be a lifestyle change and can cause problems for some people. A friend told me her surgical menopause was horrific and that she still deals with the side effects on a daily basis. There is no screening for ovarian cancer and it is a silent killer and often when found it is too late. I don't want that, but also have a history of depression and those side effects scare me.
In the meantime, Dr.set me up with a transvaginal ultrasound to check on things until I make any decisions about my ovaries and any possible surgery.
The genetic con. also recommended that I see a breast oncologist, so I did that too. I met Dr. Oncologist for breasts and she set me up with a breast MRI on this Friday, and I had a 3d Mammogram last week, she wants to do the MRI this week bc I have dense tissue.
Dr. Breast Oncologist mapped out some plans of action that I can take- ranging from least aggressive to most aggressive. Of course, she said I can get 3d mammos twice a year, or I can see a medical oncologist and take a preventative med... I think tomoxifin or something like that??? My friend at work took tomoxifin and it caused severe blood clotting issues, so I am just trying to learn as much as I can.
The breast oncologist also looked at my breasts and gave me a few options if I wanted to do a double mastectomy. She referred me to plastic surgeon to discuss those options for different types of mastectomies.
So, I am definitely in the information gathering stage and am seeking as much info as I can find.
Any insights would be helpful and appreciated. Thank you. I'm 36.0 -
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