Being younger
I have been doing a study with the cancer council recently. They are interviewing people diagnosed in between 18 and 24. They are looking into how they can make treatment and support groups more relevant for the younger ones.
I am very excited to be involved, it has got me thinking though what did you all find a little challenging during treatment simply due to your age???
Was it easy for you all to find support and how sick are you of hearing. Awwww so sad your too young to have cancer??? Did any of you have anyone not believe your diagnosis?? I did doctors and close friends did not believe it to start off, they thought I was too young.
I would love to hear your opinions on this and hear some of your experiences being young having cancer.
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I think the hardest part of my journey was getting someone to listen to my concerns (GP's etc) because of my age I was told it was nothing, just hormones etc...
Another hard thing was finding support for younger women like you being under 30 couldnt find anyone my age with breast cancer - it took me 6 months to find a support group and I had to travel an hr to get to them.
Another hard thing was fertility. I was newly married and keen to start a family. Hoping my hubby and I will still get that chance in 5+yrs when I finish treatment.
& yes I got very angry when ppl would tell me my age... i know im young... get over it.
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Whilst I was 40 when diagnosed, (but younger at heart LOL) not as young as others in this group. I didn't encounter anyone of a similar age during my whole BC journey. In fact most were a minimum of 15 years older, some retired, with grandchildren and no mortgage. I felt that they didn't have the same concerns I did, I had two young children, a job etc. Some older patients were negative about their prognosis, "Oh well I've had a full life" etc. not what I wanted to hear. Some were positive and lovely and would invite me for coffee or to support groups, but they were always during the day and I couldn't go as I was working.
There is nothing you can do about the age of the people you meet during this process, but I often lamented the fact that I felt alone due to my age and concerns, thank goodness I found this site!
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I agree with much that Sam said. Just yesterday I had an appointment with the oncologist and it is kind of at the point now where I really dont bring up too many issues for the reason that usually I get told its not too bad. Just yesterday the oncologist gave me the "other people wake up in pools of sweat from hot flushes so yours arent really that bad" Makes me think whats the point in even mentioning them. I feel like a lot of symptoms are swept aside because there is a belief that because you are young you can handle it, and by handle it, I mean suck it up.
I also stuggled with support groups. I actually went to support group for young women with breast cancer but the max age was 50 yrs. I understand that may be young for the majority of people with breast cancer but the concerns of a 30 yr old and a 50 yr old are worlds apart.
Fertility is a major concern for many of us. Oncologists are obviously focussed on getting rid of cancer, which they should be. I am now trying to move on but tamoxifen holds me back in the cycle of treatment. We are still talking about how long im going to stay on it as we were trying for a baby when I was diagnosed. I know there is no use having a family if im not here to be part of it but its still hard.
For me also one of the hardest things has been being at an age where all my friends are getting married, having babies, or knee deep in careers. Noone else is sick, everyones in their prime and nobody gets it. I found my support networks to be extremely dissapointing and many of my friendships will never be the same. Its hard watching the world go by when yours feels like it is standing still...
Wow that felt good to get some of that out!!!
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My heart really goes out to you girls being diagnosed so young. I'm 46 and I thought at first I was "young" to be getting breast cancer. The fertility thing must be a huge issue for young women who've not yet had children or completed their families. It must make the whole BC experience that much more traumatic. I've been told I'm most likely heading into early menopause - not an idea that thrills me - but at least I've had my 3 kids.
I don't think oncologists necessarily down play your symptoms though because you're young. I find the same thing happens with my oncologist and I think it's because often there's often not much they can do about them or treating the symptom would just lead to other issues and they believe it's better for us to put up with the symptoms for the greater good of keeping cancer at bay. Not always an easy thing to accept.
And I guess it would be great if we could a range of support groups - some for you really young women still concerned with having babies, some for the middle aged women like myself with school aged kids and some for the older ladies too. It obviously makes a big difference to many of his to be able to talk about all this stuff with women in similar circumstances to ourselves.
Good luck girls. I really hope you get through this and move on to start your families asap. Janet.
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I found the biggest (and most worring) part for me was actually getting diagnosed!
I am 35 and my GP initially told me that my lump must be from my seat-belt (seriouslly!!) because my mammogram came back clear 7 months earlier (even though I was having problems then). Not being happy with that, I had to go to another GP I didn't know who thankfully thought it was something and sent me off for more extensive testing. Guess what...it was breast cancer and I continue to have treatment.
GP's need to understand that cancer CAN happen in young women and that sometimes mammograms/ultrasounds are not the best way to diagnose young women due to the densitiy of the breast tissue. MRI's are more effective. My younger sister went to her GP after my diagnosis and he said to her "I learnt my lesson because a few years ago I had a young patient and the mammogram didn't detect the cancer. Unfortunately it was not a good outcome. Now I recommend MRI's for all of my young patients". That is a hard lesson to learn for all involved!
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It took three GPs and 12 months for a diagnosis, my age and lack of history in the family was why they said they didn't need to investigate further. According to them my lump was a build up of calcium on my ribs! I understand your frustration Simone.
I also agree with Janet re oncologist reactions and early menopause, not happy either. It would be great to have support groups that focused on different phases of a womans life. I have found it very hard to find a support group that suits me.
I do feel for younger women and the issue of fertility, I may have been older but I liked the idea of having my options open to more kids, should I choose to. So I really hope this works out well for you all.
I also agree with Stacey re friendships, many of mine have changed, some quite dramatically. It has been and continues to be a very Surreal experience no matter what age you are.
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Yep, same issues - fertility, friends, and feeling alone because I knew so few people who had any idea of what I was going through. I was fortunate enough to join a support group for women under 40 (I'm from Canada and was diagnosed there), but I found it was hit and miss. I'm also very fortunate that my GP acted immediately as soon as I found the lump (then again, I'd been complaining about fatigue to him for the 2 1/2 years before I found the lump!). It's been a struggle to get back to "life as normal", and the next challenge will be starting a family - we'll see how that goes!
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Yep, same issues - fertility, friends, and feeling alone because I knew so few people who had any idea of what I was going through. I was fortunate enough to join a support group for women under 40 (I'm from Canada and was diagnosed there), but I found it was hit and miss. I'm also very fortunate that my GP acted immediately as soon as I found the lump (then again, I'd been complaining about fatigue to him for the 2 1/2 years before I found the lump!). It's been a struggle to get back to "life as normal", and the next challenge will be starting a family - we'll see how that goes!
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