New Group for young women, mums.
Comments
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Woow ! Only 3 % benefit for chemo ? I was told with chemoand tamoxifen I would be 15 % less likely. I only took tamoxifen for 4 months and wish I didn't have chemo as the lasting side effects for me have been devestating and fill me with regret and anger. But that's me. Docs don't know, or wontvsuggest who will get what side effects and how long they will last for. I will support you thru whichever path you take as the docs are incredibly persuasive but please investigate as much as you can.
Wishing and sending you much strength and confidence to take control of your treatment and life now and throughout your journey xx0 -
Thank you for your wishes.
I'll stay in touch. I too find docs can be very persuasive but my theory is they see this every day. Feeling a bit more positive...after reading a few stories
What are your longer lasting side effects, I also took tamoxifen for 3 years other than loss of libido and mood swings was I was ok but hubby wasn't....lol
Thank you to all for sharing your experiences.
Stay strong xx0 -
Hi Lee,
I was diagnosed at 36 with 3 young children. I have just set up a Facebook group called Young Families with Breast Cancer and am trying to organise some get togethers, so we can become an official group, over in the Frankston area. I note that you are based in Eltham, so was thinking given the fact that both our groups are working towards the same aim at helping women our own age, perhaps we can work together towards this.
Narelle
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Thanks for your response. It's nice to know someone is hearing my grief at times.
I am off for my first ultrasound and left mammogram next week since this crappy adventure began. I must say I am going in with trepidation.
At the same time I know I am stronger and fitter than I have been for a while. Had an awesome winter skiing every week with my kids, and have found swimming really helps when I feel even just a slight back up of fluid in my arm or chest. I am retraining my brain to ignore the weirdness of having had a single mastectomy and recon and my pec muscle being in a different place. It still takes me by surprise when if turns on sometimes but I am finally managing the bench press with ease.
My periods returned in July and I had two exactly 28 days apart. I vomited and cramped as per usual (major history of severe endometriosis) and ended up at the gynae, who told me I had another 10 years of so if it. Strange that before the cancer thing she was working on shutting down my periods as they were so horrific, then tells me to continue for 10 years as we don't like operating on cancer patients. Ughhhh
I drove the 2 hours home in tears after coughing up $500 for the appt.
I then got a call from my oncologist asking me to come in, she had been chatting to the gynae.
So another couple of hundred dollars later I was still left in a holding pattern. I am not keen on zolodex as have had it before as a 25yr old to treat the endometriosis. I asked if they were going to shut my ovaries off, why not remove them? Still no one is keen to touch that. I have 4 kids, my ovaries and uterus have done their job and can now be retired to the hazardous waste bin even...I think I will be fighting this one for quite some time.
Interestingly I have not had another period for 8 weeks now. I still have cramps and feel ill but nothing else is forthcoming.
So I continue with the tamoxifen, I did have hot flushes to start with, but now don't really have anything adverse going on, other than the joint pain, but I just try to ignore that bit. The arthritis in my left hand which flared up badly over winter, will apparently be worse if I am changed from tamoxifen to another drug, so I am putting up with that too.
I hear your pain over the curly hair...my husband told me I looked like crusty the clown from the Simpsons the other day. Hilarious. While I would like it to grow and was not keen on a cut, I have decided to get it cut next week as it's seriously crazy.
And the great thing to look forward to is that I am going away in 2 weeks to play hockey with my friends in the masters pan pacs. They were changing the name of our team to numb nipples in my honour, but we have gone with silver Patronas because let's face it, tequila is important.
I know I will have to wear a compression shirt in hot humid weather but I am looking forward to it. The girls have bought socks and hats and bandannas from bcna, so other than the black skirts we will be pink!
I remember saying to them this time last year "I don't think I will make it this year", when I was in the midst of chemo. Amazing what a difference a year makes.
So other than that, I will keep on going one foot in front of the other. Sure I have a long distance to medical, but I live in a great place.
Lisa0 -
Hi, yes very happy to work together. I dont need to be a ring leader or have big group meetings, just frustrated that we seem to get forgotten in the whole process of this disease and its treatment "journeys". We do need a voice and to be able to share our experiences and any health successes with each other so we can maintain control of our lives and health and families and not get swept away in the medical minefield and process and expense of it all.
Thanks Narelle, please feel free to direct all to your facebook group as we all need as much support as we can :-)
Lee x
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I actually find this messaging system quite awkward and a facebook group would be much more convenient and familar to use. especailly a prvate group :-) cheerio Lee
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Hello ladies,
I'm 43. Living in Sydney. Have a daughter aged 14 and two step sons aged 18 & 21.
Yesterday I got my mammogram and fine needle results and have a 6cm growth in my right breast. I should get grading and receptor information tomorrow but as I suspect I'll be conquering this for a while to come I thought I'd start making friends.
Thanks for all your posts, it's already helped with the questions I will want to ask.
Hugs to you all,
Lesia
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Hello ladies,
I'm 43. Living in Sydney. Have a daughter aged 14 and two step sons aged 18 & 21.
Yesterday I got my mammogram and fine needle results and have a 6cm growth in my right breast. I should get grading and receptor information tomorrow but as I suspect I'll be conquering this for a while to come I thought I'd start making friends.
Thanks for all your posts, it's already helped with the questions I will want to ask.
Hugs to you all,
Lesia
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Hi Lesia,
Wow, big couple of days for you.
My advice is take someone with you who can remember what is said to all of your appointments. Plus take the time you need to make your decisions. Don't get rushed, extra days or a week is going to make no difference. I remember just wanting it done right away. I really didn't process any of it. My four tumours when combined were about the same area as yours. I had no option but to have a mastectomy, (smalls boobs to begin with).
I also had second opinions for chemo and radiation just to get my head around it.
It's a long road, but women are tough, you'll get through it.
Massive hugs to you.
Lisa0 -
Thanks so much Lisa. I am so lucky. Hubby was with me through all the testing and will be at the surgeons. I have a few beautiful friends and my MIL who is a breast cancer survivor as my back ups for appointments.
I know it's a long road and I know I will have bad days but I will survive.
Big hugs to you as well. Thanks for showing your strength, I can't imagine the added stress of being rural!!
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Glad to hear you're in good hands. It's a journey but it's a road well travelled sadly, so you are never alone.
I actually have a medical background which did help me find my way through the labyrinth of drs and second opinions and helped to me manage my own treatment as no specialists ever talk to each other when one is nsw and the other is in Canberra. Absolute drama.
I would say it's good to keep a record of what you are told and also what medications you are given in case you need to be given something else by a dr who doesn't know your history.
I do wonder if it would have been easier just packing up and moving in with family in Sydney, but home is where I could really relax and where my 4 kids are. I know I would not have managed work during my chemo. It smashed me hard. It was hard enough getting kids to school and washing done. I hope you are one of those people that doesn't take such a hard hit if you have chemo.
In saying that, once it was over, well 2 weeks after the last one (Xmas eve 2013) I felt pretty good considering.
And now a year on, I am back running, have taken up swimming to assist with my lymphatic drainage issues and have snow skied all winter.
This really is a great vessel to ask questions and just debrief in. Everyone has useful information to share. stay strong.
Lisa
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Your post gave me a huge smile, thaks.
I'm third year biomed and have a large number of medical friends. Putting on the science hat has proved invaluable so far and with a hubby who is a pain specialist as my second set of ears I am feeling very lucky.
So glad you are well now. Can't wait to join that list. You must just hug your kids so much harder every day!
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Sorry typing this on my phone...if you search "Young Families with Breast Cancer" on Facebook you should find the group.0
