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.

No-one, categorically no-one, should regret any capacity to breeze through this!! I breezed through my first 3 months of chemo. 2nd 3 months brought me down to earth so always remember, things may change! A life threatening illness is just that - some of us will get through with a bit of singeing, other will get seriously burned (sometimes literally!). I don't want anyone feeling guilty for not being "as bad" as someone else. You have crossed one line - something that might kill you, long before you are 95, entered your life. This must be much harder when it has happened to someone you care for too. How you deal with it varies immensely. Many just want to get back to their normal lives as soon as possible, many carve out a new normal and add something, often a bit intangible, from the experience. Some find their lives diminished in different ways and carry grief. I am a bit of a Lucy too - Peanuts cartoon, never happy until I know more than is good for me! So ask away - your medical team, here, wherever - until you get the information you need to deal with this part of your life in the way you want. Best wishes.

WTF...... @Janine60 .....Who cares if she is running another clinic. That's her job and so is empathy and looking after their patients. Seriously, what is it with private Dr's receptionists?????? It takes a pitch fork to get past some of them. That's just really slack. These dr's can see the results on the computer as soon as they are uploaded and available. It's not like they have to wait for the mail to come in! And why on earth does it take that long to get a referral through if they are in the same building?? You are not overreacting at all. Sorry for the rant. Just pisses me right off. Hopefully it's a bit smoother sailing from now on for you.xoxo

Hi Janine Yes I am the same, Operated on Dec 2107. 1st stage contained not spread, I thought the same this will be easy, but now realise it isn't. To start with no one rings back when you are sitting waiting and waiting, so I started ringing back myself as I hate waiting and have found things easier. The best advise I have is This will take time for you to realise it is actually happening and except whatever comes along, just go with it and next day will be better. I had a Lumpectomy, as well and Surgeon made both side the same so I had a lift when she did it, it looks so different with my nipple where I can see it now and Boobs smaller, but Surgeon cut a lot away to ensure Cancer didn't come back. Going to Radium tomorrow to get measured and make a plan`I had a delay on Radium as Couple parts werent mending, Surgeon suggested Stratamed to help it heal and it has worked in a week and sealed up( Great product) so off for Radium tomorrow for dates to get it happening. Take this time to mend yourself inside out and appreciate each day, as life is so precious. Keep Positive, it is a different Journey each of us must make.

So glad you have the appointment. Having a plan really helps. Chemo or radio should start within 6 weeks. They missed my referral and just squeezed me in the time frame. I saw the oncologist 10 days after surgery in Adelaide. But a different oncologist (same team) would do it in Broken Hill. If I hadn't rung I would have missed the crucial time period...and mine was a grade 3 Es+ Her2+. However...don't feel a fraud. Breast cancer is different fir everyone and you know as we all do that women die having slow growing bc too. Your personal experience of losing your Mum only heightens this awareness. It's not a cold. It's a genuine life threatening change in your cells.My husband did the whole ostrich thing. Men like to pretend its just a little blip. They don't get the fear that goes with it (unless if course they've experienced something similar ) My husband really didn't believe it was bc until pathology laid out. (He quietly researched my pathology and quietly freaked out). However I could never discuss my real fear of dying and leaving them with anyone except other bc sisters. (My sister died of bc and 3 Aunts died of ovarian/breast cancer) Always the brave face at home. That's us.This site is a great place to just blog about that. Saying...I'm scared, I'm terrified, I don't sleep. ..it's all okay. Because we get it. Whether it's a near miss, stage 0 or metastatic. ..the emotions wash over us all. Keep ringing up to ensure you aren't missed. It's your health / your life. Kath x

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 jointsVaginal drynessReduction in bone densityThe 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.

Trying to make sense of it all.....

42 Replies

Hopes_and_Dream
Member
8 years ago
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
Mollygirl
Member
8 years ago
Everything crossed for you @PatsyN xx
PatsyN
Member
8 years ago
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.
Janine60
Member
8 years ago
@SoldierCrab

No, they haven’t. I guess it must be OK.
SoldierCrab
Member
8 years ago
hi @Janine60 have they called you back ?
Janine60
Member
8 years ago
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.
Rosie_BCNA
Member
8 years ago
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
Afraser
Member
8 years ago
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!
Janine60
Member
8 years ago
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.
Afraser
Member
8 years ago
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.