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Diagnosed aged 35

12 years 7 months ago #4172 by wendy
Hi Kate,
Welcome to the forum...so sorry to meet yet another young woman with this disease. For what is supposedly a rare condition there are many women out there with it...my sister is one of them, she was dxed at age 49, which, though older than you, is still quite young to get any kind of cancer. I lost another sister to inflammatory breast cancer, she was 46, and I was dxed with invasive breast cancer at age 43. I know what you mean about early menopause, as that was one of my treatments. A mastectomy can in no way be compared to a radical cystectomy, though. I feel I got off easy compared to many of you.

Hmm...how best to live life post-diagnosis...good question we are all busy with. I asked my surgeon at the first post-op appointment, "Aren't you gonna tell me I'm too fat and to go on a diet?" My sister had been nagged quite a bit about being overweight with breast cancer. He only looked at me and said, "Just be happy." That is the toughest thing of all, it seems. In fact, that is simply another term for the state of enlightenment. To reach enlightenment is to be at peace with yourself and the universe and what it's thrown at you so far.

It's said that the universe doesn't send anyone more than they can take. That must mean that cancer will bring out the best in us if we make the most of the experience. That's something I witness all the time.

Being involved in the cancer community renews my courage to continue, takes my mind off my own problems, puts everything into a more realistic perspective and helps me feel less afraid. It's almost a paradox, the more you learn about what-all can happen after a cancer diagnosis, the more empowered you become - not more afraid.

My family history has been my main education, cancer is rampant in my family and we've had more than one worse case scenario. Nothing surprises me when it comes to cancer and although that has a grim aspect to it, it's better than not knowing what you may (or may not) be in for.

As you saw, communicating with others who've been there can be a source of relief.

It's not for everyone, however. Some people who browse this board must surely sign off in total horror, and want to bury their head in the sands....I support those who wish to remain in denial, as well. It's fair enough to leave the worrying to the expert in charge, and that's the traditional way of dealing. I should better phrase that: I support the idea of letting your medical professional be in charge. The caveat would be to have much confidence is his/her expertise. But the fact remains that nobody else has as much at stake in a life as the one living it...

As to your question about scans, I'm pretty sure that the US guidelines would have you getting abdominal CTs every 3 months the first year post op. MDAnderson's site has a good pdf file:
http://utm-ext01a.mdacc.tmc.edu/mda/cm/CWTGuide.nsf/LuHTML/Sidebar1?OpenDocument

Take care,
Wendy
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12 years 7 months ago #4160 by kate
Hello, thank you for your responses -it's a relief to know I can share my experiences with others. Although I had an amazing team of surgeons (at least I hope so!) I always felt like an interesting case study at best baffling doctors because of my age and health profile. And it seems I am far from the youngest...Bedside manner was lacking to say the least and as for issues facing young women I don't think they knew where to begin. I am sure that the greatest source of comfort and support going forward will be people I meet in the real world who have gone through similar experiences and I am looking forward to getting in touch. Although I am something of a "virgin" on this forum people I would be happy to exchange any thoughts/info/concerns be they the physical or emotional side of BC. I would also be very interested in hearing advice on how best to live my life after all the chemo is over e.g diet, exercise, number of scans per year, whether abdominal scans are the norm or whether people are getting head to toe scans etc. Thinking of you all, Kate
The following user(s) said Thank You: jessb418, dani

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12 years 7 months ago #4143 by clur
Hi
I am a bit older 41 but still young enough to have the same issues.I had very similar treatment and path grading and was diagnosed last summer too with my RC in August.
My story so far is in the story boards but feel free to contact me if you wish.
Take care and well done for getting this far.
Love Claire x

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12 years 7 months ago #4126 by amy
Hi

I was 26 years old when I was diagnosed. I had a low grade t.c.c. and the doctors seem to not know exactly what to think. There is another woman on this board in her early thirties who had had a RC. Her name is Angela. Look for her in the storyboard. You can PM me if you want to talk.

Best of luck
Alyssa

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12 years 7 months ago #4125 by kate
I would love to hear from any women who have been diagnosed with bladder cancer at a young age. After what has felt like an interminably long journey (diagnosis of stage 3 tumour July 06, radical cystectomy, Hautmann bladder, almost at end of 5/6 cycles of chemo) I am only now really trying to come to terms with it all: recurrence, hypercontinence, being infertile, sexuality issues. I have been so positive in dealing with all the physical aspects up until now I think my head & heart need some support! It doesn't help that there is so little information, public awareness or "endorsement" for this type of cancer as if it is supposed to only affect the elderly. It is all rather overwhelming.

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