Ladies in their 40s
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Hello everyone, I'm Vickie 46 years old and diagnosed September 2016 with a grade 2 IDC ER+ PR+ HER- my partner found a tinylump it appeared literally overnight and luckily my gp took it seriously and I was seen 10 days later by the hospital breast cancer team. One mammogram and ultrasound later they were convinced it was NOT cancer and told me so, my partner convinced them to do a biopsy just to make sure good job he did one week later I was told it was invasive breast cancer. I had it removed on 18 October via a lumpectomy it had almost doubled in size in a month and a sentinel node biopsy was done at the same time.
Lucky for me clear margins and no sign of any cancer in my lymph nodes either. Due to my age they wanted me to have chemo but I pushed for oncotype testing and it came back a 22 so decided against chemo. Rads were booked for January and I was told to start the tamoxifen on Boxing Day which I did, I lasted just 20 days before being taken off of it due to a severe psychological reaction I honestly thought I was loosing my mind, I even had suicidal thoughts daily which is ridiculous considering the fact I want/need to live a very long time.
So here I am half way through rads unable to take tamoxifen and being told by my oncologist that there is nothing else I can have as everything else is much worse and taking the tamoxifen or not won't make that much difference anyway!! Not really sure what to think other than what will be will be.
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Hi Vicki,
I responded to a different thread of yours regarding your extreme side effects to Tamoxifen. I too am 46 (born in 1970) as well. I had a 2.5cm in 2013, which no one, including myself really took that seriously. In the past 2.5 years I had 5 mammograms, 2 ultrasounds, 1 fine needle and 1 core biopsy, and an MRI - and was told I was "normal." At the last minute I was referred to a breast surgeon, who decided to remove what they thought was a giant fibroadenoma. It turned out to be a 9cm phyllodes tumor with 8 sites of cancer (multifocal). They didn't even bother listing each one, the pathology report just said "ranging in size." My HER2 came back equivocal on the first 3 tests, then positive on the fourth. I met with the oncologist last Wed, and she said she would bring my case up to the tumor board to see if I can avoid chemo given the numerous on the fence HER2 results. If they decided I could, she would order the oncotype to help me make the decision if I wanted chemo or not. I am still waiting for the genetic results (CancerNext). I don't consider myself to be an anxious person; I was a marathoner, high altitude trekker, and remote adventure traveler - so a bit of a risk taker. However, I was already leaning towards chemo given that they almost missed several tumors already, and I could very well miss the next one. I have seen women on here that had 1cm tumors and had metastasized, or women with nodes clear that metastasized. While the phyllodes screwed up the biopsies (all 8 samples missed a tumor), it was so huge (it covered my entire breast and required a 4 inch incision to get out) it drew attention and eventually they removed i). I may not be so lucky next time. I think they will go with HER2+ because to be wrong has a bad result. My oncologist is offering a chemo light program for 12 weeks - less toxic and shorter duration. Maybe that is something to consider?0 -
Hi All
I am 42 and was diagnosed last July 2016. I am nearly finished chemo and have to say was not that bad, bit of soreness in the bones and joints. I am due to start radium and was just wondering what are the side affects from that? Also my onco suggested having my ovaries out later this summer if my periods return, so more surgery. Hope everyone has a good day!
Sabina
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Sabina, I didn't have chemo just rads after surgery. I continued to work but I will say that I was pretty wiped out by the end of the day. Like bone tired! Be sure to follow the ROs directions for skin care as well. I finished radson Dec 9 and my skin has healed up well. Good luck to you in the next phase.
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Hi Falconer
Thank you, I will follow all instructions.
Sabina
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Hi All
Developed a pain in my lower left leg about 2 weeks ago. I am finishing my last chemo this Friday and had a clear bone scan in September 16. I had micomets to the sentinel nodes is it possible it could be mets? Have my self convinced it is. I do walk a lot could it be a sore muscle?
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Deep breaths, Sabina. The odds that it is bone mets are very very slim. It's probably not the last time you will ask yourself that question. I'm three years out and I still worry about it sometimes but it's less and less every day. Congrats on finishing chemo!!
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Hi all- just wanted to introduce myself to this thread, even though I don't get around to participating in this awesome, supportive community as much as I should. Just too tired from treatment and the job at the moment. I'm going back to read everyone's stories when I get my 3rd out of 6 TCHP infusion tomorrow.
I was diagnosed right after my 40th birthday. No kids by choice, very supportive husband. I had been going through a transition where I was just learning to enjoy more of life. That is, spending more on frivolous things rather than squirreling every penny away for retirement, getting fit and toned, trying new activities like stand-up comedy to get rid of some inhibitions, paying more attention to my sexual health and intimacy with my husband, etc. ... And I feel like cancer came along and kicked the legs out from under that momentum of being selfish and enjoying life.
I know chemo is temporary, but I guess I'm just having a glum day. It's funny. I'm wildly optimistic that treatment will work and that this isn't a death sentence for the immediate future... but part of me just thinks that years to get get back to a "new normal" make me feel like I'm being cheated out of a decade or so of life. I'm in chemopause and doing everything I can to stay moisturized inside and out, but I just don't have the energy to be excited about anything. Wigs and makeup can't hide what I see in the mirror - bad acne, Perjeta rash, steroid bloat, thinning hair/brows/lashes, flabby bat wings which hold a lumpy arm port, etc. And I'm just now starting to think about surgery options and ITS side effects, including those of radiation. Sigh.
Maybe I'm depressed, but the most humiliating aspect to me is all the work that needs to be done to ward off gynecologic side effects. It just makes me feel cheated out of however many years I had until hitting menopause naturally. I mean, I know it's not a life or death thing, whereas cancer IS, but still... I just needed to vent. I've been lurking on the "I WANT MY MOJO BACK" thread, and all you ladies are so lovely for your support and tips. But I just look at vaginal dilator kits online and feel ashamed and very asexual. I don't know why.
I guess I'm thinking about being "selfish" and getting some strictly cosmetic plastic surgery after getting back to a "new normal", whatever that may be in a couple of years, post chemo and breast surgery. Has anyone else done this? i.e., opted for body contouring or breast augmentation, despite only having a lumpectomy? My perverse thinking is that I want to be able to buy my way back into feeling like a sexy woman again, which at this point, feels like a fading memory. I will do some therapy and counseling, but I just needed to vent. Thanks, everyone!
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Hey, anoncub, you're not alone. I know just how you feel. I too was in the best shape of my life when bc came and knocked the wind out of my sails. And tonight, my valentine is an aromatase inhibitor; my DH brought it home from the pharmacy for the first time this evening. I've been on ovarian suppression for three months and tomorrow will begin the end of estrogen. For a while. Do try to remember that the treatments are temporary. There are many many women whose lives are slowed down by this disease but not stopped.0
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Falconer and Anoncub - bc treatment takes about a year, a year of some really sucky shit as you already know. Then there is another period of time after treatment, after surgeries, when you are thinking that you are at a new normal. THEN - slowly, you realize that you don't have to get used to a new normal because your old normal starts to come through. I promise.
BC takes a good 18-24 months to get through. I ate, I took anxiety meds, I worked with the social worker at my cancer center. I tried to exercise, I tried to work, I tried to make it all okay. Until I decided that I just needed to get through the day, the week, the months. I'm not sure when exactly I started to feel better and more like my old self again, but it did happen. And I'm pretty sure it will happen for you too!
J
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Hi jenwith4kids
Oh I hope so. Final chemo Friday so will mention it to doctors.
Thank you
Sabina
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Jenwith4kids- that's such a relief to hear. So far the only thing I've heard is about getting used to the "new normal", but I still selfishly want my old normal, I suppose. You ladies have all really been more help to me than you know- I really appreciate the camaraderie!
Falconer and Sabina1974- hang in there with me!
And Sabina1974, congrats on your final chemo tomorrow- will be thinking warm thoughts for you!
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Hi jen
Thank you, a big glass of wine afterwards with my hubby and a pint for him. I know would like my old normal back to, but I am happy to take new normal if it keeps this disease away. This is my 3rd time going through a cancer diagnosis so I ain't doing a 4th. So glad you are doing well xx
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Hi Anoncub
Sorry I thought it was jen who responded this chemo is frying my brain cells plus I need to start wearing my glasses. Thank you.
Sabina
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Jen- thanks for the perspective. It is a long haul while you're in it, but I'm already over 6 months in so that's a good sign! I'm wondering how you felt once the TEs came out. Did you notice a decrease in pain around the surgery site after reconstruction healed? TE under my pectoral muscle is so beat!
Btw- I'm a Jersey girl though I live upstate. Been wondering what this boob will look like in a bathing suit when I go to the shore this summer.
Sabina and anoncub- how are you feeling today?0 -
it does get better ladies. I was just thinking about the fact that I haven't gotten up in the morning complaining of tamoxifen in almost a month. The symptoms are still there, but I have adjusted.
I still have trouble looking at old pictures of myself. I don't recognize that carefree girl in the picture. I still think of my life as before BC and after BC. I hope that changes.
Just wanted to say you're not alone in your thoughts everyone!
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Hi Falconer, Exchange surgery was the happiest surgery ever! And it was a pretty easy recovery. HUGE difference in how I felt. I had rads, so I had my TEs for more than a year. Getting them out was a big relief. It wasn't long before I was able to sleep on my tummy and easily roll over in bed. And not for nothin' they look pretty good in clothes!
I'm happy to lend an ear or provide some perspective from the other side. Message me anytime! I don't come by all that often any more....
Hang tough!
Jen
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Hi Falconer
Not to bad chemo is finished bit tired but that's it really. Going to have the ovaries out that decision was made today but that will be towards summer time. So here in bed chatting to you quys logging on as I do, gives me hope when I read all your stories.
Sabina
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Hey Sabina- glad to hear you're getting some rest. Looking forward to a three day weekend here... I did start a new topic last week- surgical vs medical menopause. Check it out! Women have shared their thoughts and experiences so you can hear from others if you feel like it anyway.
Jen- thanks and I will message you soon. I have a follow up w my PS this Wednesday. Hoping he'll give me a surgery date to get this TE out. I'm glad to know that you feel happy with how you look! It'll be good to have a sense of completion soon.0 -
Hey all. I'm 40 and was diagnosed on Friday. I don't have much information yet.
I turned 40 in May and had my first baseline mammogram in December. From there it's been more imaging, biopsy, and now, diagnosis.
It's all very scary. I understand that recurrence rates are high for those of us who get it before 50.
To make everything a bit more fun, I also have rheumatoid arthritis and fibromyalgia. In a way, cancer won't be that different for me. I'm already an invalid :P
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Hi everyone- sorry for the sparse replies... Anemia hit me hard with the last infusion.
crowfeathers- Welcome! I'm so sorry the circumstances that have brought you to this lovely community. The thing that cancer has taught me is that I am stronger than I think (most days). I think the right thing to do is not to worry about the recurrence factors, but just deal with treating the current disease. I'm so impressed with how far treatment has come in the last decade when I watched my aunt (through marriage) die of breast cancer.
Tresjoli2- loved your message; made me smile today. Everyday when I have hope is a good day! I too, have tried to stay away from looking at pics of myself from prior to treatment. It just pains me to see how much everything in my face and body has changed, and I haven't even gone through surgery yet.
Sabina- are you through with chemo? Congrats!! That's a huge hurdle. You are done!
Falconer- how did your follow-up go?
I hope all is as well as can be. Sending you ladies support over the Interwebs!
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Hi friends- anoncub, thanks for checking in! How are you feeling since anemia set in? I hope your appetite has returned and you can get some iron rich foods into your system.
Crow feathers- I hope you feel like you have a good team of drs and support as you begin this journey
Follow up w PS was fine, though still waiting to schedule DIEP date. Not for any other reason than PS is a traveling man. Anyway I do like him and his staff is great, they all have a good sense of humor. This was the second time I shrank away into the corner of the exam room while PS kneaded my belly fat. Really, I know he has to get a measurement but it is worse than any boob grabbing that drs do. Gawd! Plus there's this old tattoo that I have on my right lower abthat's worth chuckling over every time.
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Hi everyone
I live in the UK and am 47, had my lumpectomy about 3 weeks ago and just waiting to find out what my oncologist wants me to do for chemo, as I had a 3.7 Endopredict score and they say I have to have chemo because of that. Started off being told it was stage 1, now its grade 2a, I was hoping to avoid chemo and am very scared of doing it but if it will help me I think I will have to do it. It might be Taxol x 12 on its own, does anyone know about that?
Trying hard to think positive but having moments of fear and gloom. Apparently anti depressants can be dangerous if you're having chemotherapy. I at least want anti anxiety medication before the treatments start. I've got a CBT counsellor and am doing a mindfulness class, seeing a nutritionist - doing what I can to help myself.
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Hi anoncub
Yes all finished. Smothered with a cold this week though so here tucked up in bed. Hope you feeling well yourself?
Sabina
A
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Hi tinker-bell
I am here in Ireland, so not sure what endopredict score is! We get very little information over here with regard to our pathology report. I just finished chemo and honestly it's very manageable so try not be to worry to much.
Sabina
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Hi Sabina!
Thanks for your kind words. it's really good to hear from people who found chemo not as bad as they expected it to be! I'm glad it went well for you!
Went to see the oncologist today. As my cancer is not exactly borderline, but medium risk according to Endopredict (it's like Oncotype DX and tells you what your chances are of recurrence, mine was 3.7) I've been recommended either 4 monthly doses of EC and T or 12 weekly doses of Taxol. I think I'm going to choose 12 weekly Taxol doses. This is apparently easier to tolerate in terms of side effects etc so I'm keen on minimising those.
I actually feel better for talking to the oncologist. Even though chemo will make a small impact (about 2-3% increase to my 86% chance of no recurrence without treatment) with tamoxifen it will get it above 90%. He was also reassuring about side effects etc although I am most worried about neuropathy and hair loss.
And they'll give me premeds as I get major anxiety before medical procedures - was lying on the trolley before the op trying to convince myself not to run away!
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Hang in there tinker-bell! One day at a time, and it sounds like you are doing a lot of good things to take care of yourself. Sabina1974, thanks for sharing your experience!
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Hi ladies! Missed you all. It's been a tough infusion round for me, and I am just dreading the next one coming up this week. On top of bleeding from my nose and other unpleasant places, I just haven't been able to keep my eyes open for more than two hours at a time. The nurses all said to exercise / walk to help the fatigue, but it's painful to just walk around the house and do self-care some days.
Falconer- you made me lol at the PS consult and grab! As well as the tattoo.
I had a PS consult this week, too and I'm going to get a second opinion. She scared me about the effects of radiation and the disfigurement from a lumpectomy. Going to see someone else who might be a little more sensitive about potential options. It is funny how every time I have a clinical exam, the docs tell me that I have small breasts. It's like, "Yeah, I know I know... I have small boobs... can we please move on?" hahahaSabina- hope you are healing well, post-chemo! Bummer about the cold, but I know and hope you are being kind to your body and taking care of yourself. I remember this is your 3rd round with @$#%ing cancer, and girl, if that isn't strength to admire, then I don't know what is. You've inspired me on the days when my mind goes to "what ifs" about recurrences and mets. I hope you feel slightly better knowing that you're another lady that keeps me going. "If they can do it, I can pull on my big girl panties and do this, too."
tinker-bell- glad you found this forum, although I'm always sorry about the circumstances in which I meet folks here. It sounds like you caught your cancer early and that you're doing the right thing as far as the systemic treatment to minimize risk of recurrence. Honestly, although this past week has been hard on me energy-wise, chemo has not been so bad for me and I'm halfway through with the dose-dense TCHP treatment. I say it hasn't been that bad because the anti-nausea meds have been glorious, and icing my toes/fingers during treatment has helped me prevent any neuropathy so far. I'm also cold-capping and although my hair has significantly thinned, having the hair I still have has helped me mentally with this journey a bit. I bought a wig as a back-up plan, and even though I don't wear it so often, when I put it on, I find that it does lift my mood. It sounds like you're getting the right support team around you, and I hope we can help be a part of that. Hugs from across the pond.
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Hi Dear Tough Ladies,
I'm so glad to find this forum. I'm 49 diagnosed at 48. No human children just plenty of the four legged kind. I was wondering if anyone has had taste buds problems taking Tamoxifen? I thought I was over that problem a couple of months ago, now I'm having that problem again. My mouth constantly taste like I've been sharing my horses salt block only I forgot to share.
Also, now having slight tenderness at all times under the armpit with some swelling. Start rad later today will ask radiologist. One more more question at what point are we able to say we are a survivor?
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Trooper2- welcome! Sorry that you are here with us, but wanted to say that I love your handle. Forging on is all we can do, I tell myself.
Unfortunately, I can't share experience for either of your questions since I'm still early in treatment, but you made me smile re: no human children, just plenty of the four legged kind. I do not have human children either, but love animals. Would have huge dogs and small, cute rodents if I weren't so allergic to them.
I will say that chemo gave me taste bud problems, but the symptoms changed from one infusion to the next. One cycle, everything tasted metallic and I only wanted bland bread and frozen fruit. Another cycle, it was like eating through gauze strips and I wanted everything salty, nothing sweet. I can no longer enjoy chocolate like I used to, boohooooooo. Anyway, just commiserating with you, even though this is not a result of Tamoxifen in my case.
Wishing you all the best on your radiotherapy journey!
I dunno when people start their countdown on survivor terms, but as far as I'm concerned... if you're here with us, you're a survivor, regardless of cancer status.
xoxo
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