Forum Discussion
Trying to make sense of it all.....
What I am feeling like at the moment, as I wait is that sometimes I feel like - I am not wording this so well, sometimes I feel like a bit of a fraud - being Grade1 and probably Stage 1 as well - maybe stage 2 but only on the cusp of it.I feel that with treatment things will be ok. I will breeze through it and that it will be like any other condition that I might be diagnosed with. Conversely, I have a bit of a wobbly day and think, no, breast cancer is a serious thing and I need to be mindful that life will change as I know it. I swing between both ideas and struggle with getting a real sense of how it will affect my life and that of my family's. With other people who have a similar diagnosis, have you felt similar??
I think half of the issue is that I have initiated all resourses myself - ordering the breast care kit, getting in contact with the breast care nurses. I knew I would need support so mobilised that myself. Even though I had a lumpectomy just prior to Christmas, I have had not had any contact with any professionals who can tell me what is going to happen. I have really no one to talk to. My mum passed away from breast cancer nearly four years ago. She had Grade 3, stage 4 that had already metastised to the liver on her diagnosis. She got 15 months. The breast care nurses have been lukewarm. They have given some information but not everything that I need.
What I am really looking for is some validation around what I am feeling and how other people managed it in the early days. Given my episode of breast cancer is only Grade 1, how much impact did the diagnosis and treatment have on peoples lives?
Sorry for the whinge - I really don't know how to feel.
Thanks. Janine.
I think half of the issue is that I have initiated all resourses myself - ordering the breast care kit, getting in contact with the breast care nurses. I knew I would need support so mobilised that myself. Even though I had a lumpectomy just prior to Christmas, I have had not had any contact with any professionals who can tell me what is going to happen. I have really no one to talk to. My mum passed away from breast cancer nearly four years ago. She had Grade 3, stage 4 that had already metastised to the liver on her diagnosis. She got 15 months. The breast care nurses have been lukewarm. They have given some information but not everything that I need.
What I am really looking for is some validation around what I am feeling and how other people managed it in the early days. Given my episode of breast cancer is only Grade 1, how much impact did the diagnosis and treatment have on peoples lives?
Sorry for the whinge - I really don't know how to feel.
Thanks. Janine.
42 Replies
- Oh that is such a long time for you to wait for your node results @PatsyN. Wishing you all the best for for a good outcome. Jane x
- Everything crossed for you @PatsyN xx
- I was diagnosed last May began chemo in june to november, full mastectomy in December, axillary node clearance in January (I've still got a drain in after 2 weeks) and next week I will get the final word on how many, if any, nodes were clear... so I'm still waiting for a prognosis.
- @SoldierCrab
No, they haven’t. I guess it must be OK. - hi @Janine60 have they called you back ?
- I had my planning scan today. I couldn’t do the breathing they wanted me to do. They said they might have to call me back. I’ll just have to wait and see. Treatment starts on Feb 20 for six weeks. They are going to try and schedule my treatment between 11 and 1pm so that we can keep my disabled sons routine as much as possible.
- Hi @Yogibooboo, @Janine60, you have received some excellent information from the community and @Afraser.
Here is the link for information about hormone therapy on the BCNA website https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/ and there are links to additional information and resources you can order or download.
Best wishes, Rosie - Most of us don't have a clue about our bond density until something goes wrong! Comfort is a wonderful thing in times of stress and can come in all shapes and sizes. Keep positive, this one is winnable!
- I already have osteoporosis which surprised me. I had no idea and only found out via the scan. When my mum had her cancer we focused around creating lots of good times and memories in our family. She only got 15 months following diagnosis. She was very strong and stoic. We were the same size and had the same style so I got a fair bit of her clothes after she was gone. I wear one of mum’s tops when I want to feel closer to her. I have a couple of roses that came out of her and my dad’s garden. I see each bloom as a sign that they are watching from heaven. I believe in God so I think that they are up in heaven and are angels looking down on us. It calms me and allows me to feel as though they are still around even though they are both gone.
- Your family has certainly been through a great deal! But in answer to your question, and remembering this is only one person's experience, the three main things with hormonal treatment in general and Femara in particular are:
Arthritic-type aches and pains, particularly in the joints
Vaginal dryness
Reduction in bone density
The positives are that hormonal treatment had been effective in reducing the chance of recurrence of hormone positive cancer. Tamoxifen is now considered even more effective over 10 years rather than 5 and early research indicates Femara may be the same. Femara can only be used if you are post-menopausal. But it's highly variable and the question will be about weighing up the likelihood or actuality of the negatives with the estimated level of protection.
I have been on Femara for almost 5 years. I have had no problem at all with aches, pains or joint problems - I have creaky knees but I had them before bc!
I have severe vaginal dryness. It could of course be ageing, but it happened in 6 months after starting Femara so I think not! There is a group on this site (Let's Talk Abouf Vaginas) for more information. There are certainly ways of dealing with it but effectiveness is also variable.
My bone density when I started Femara was excellent so I think I will get through 5 years without too much damage, but I am not at all sure about 10. Regular tests are part of the monitoring which allows your oncologist to discuss options if the impact is becoming too great.
Ask questions! What are the figures for benefit? How is your bone density before you start? As with any treatment you can always stop if the side effects get too much.
I have found it all goes faster than you think!! I think I would find if harder to see someone close go through it all, for myself it's just been a not too difficult process of adapting to a few changed circumstances. Mostly I feel fine and best of all, appear to be cancer free. Best wishes.
