Trying to make sense of it all.....
Comments
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Hi Janine60, so I'll give my post another go since I screwed up the
first one, thought it posted and it didn't. I was dx 21st Dec, 2017
with stage 1, grade 1A bc, hormone positive and Her2 negative so not the
worst diagnosis but a cancer diagnosis always seems to incite fear.
In 2010 my eldest daughter (Rachel) @ 27 yrs was dx with 3rd stage bc
(no family history prior to this that we know of). As she was so young
obviously it was devastating news and as a mum watching her go through
the various treatments I was heartbroken. (She is a type 1 diabetic
since 9 yrs old). My youngest daughter, (Jessica) and I are also type 1
diabetics (juvenile diabetes). Remembering Rachel's struggles through
Mastectomy within 3 weeks of dx followed by IVF, chemotherapy and
radiotherapy and finally reconstruction which she had major problems and
had to remove tissue expanders for six months and re-do the whole thing
again left me very wary. Now that I have told you about our short
history in bc. I am always curious to read how other people feel, react
and cope with their individual cases trying to find leveling ground for
my own feelings.
My lumpectomy (plus Sentinel Node biopsy -
clear) was on 10th Jan, 2018 and at my follow up appt Dr. advised there
wasn't a clear margin and he'd have to go in again and remove more
tissue. I am 10 days post this and all is well awaiting Radiotherapy
consultation on Wednesday. It all seems pretty straightforward
according to my doctor and so many friends etc. I feel totally well and
coping really fine, yet every now and then feeling a bit shell shocked -
am I a wimp? I don't know, maybe I am.
All that being said I
realise I'm quite lucky in that my treatment is way less than my poor
daughter and the prognosis is great. My only question at this time is
about the five years hormone treatment - I knew Tamoxifen was an option
but my doctor has prescribed Femara which I heard had much worse side
effects than Tamoxifen. I realise everyone is different so it may not
be the case for me. Does anyone have any information or they can share
with me on this? I am telling this story now so that I can look back in
a few months/years time and hopefully go, wow so glad it's all over!!!
Thanks for reading my little blurb.
61 yrs young
dx 21/12/2017 Stage 1 Grade 1A
Hormones positive and HER2 negative
Lumpectomy 10/1/2018
Re-excision 24/1/2018
Radiotherapy - yet to happen
Femara for 5 years
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I am Grade 1. I had two tumours in my breast. The 2cm one caused breast changes which sent me to my GP. The second tumour was seen on ultrasound but not tested and my surgeon and I decided he should remove it as well. That also came back as Grade 1 but it was on 2mm. I think I was stage 2 because of the size of the first tumour. That’s what my Dr put on the request form for the Endopredict. I have clear margins and my nodes were clear. I have much of the same reaction as you. It’s early breast cancer and it’s very treatable but some days I have felt fragile. My mum had to wait over Christmas and we knew her cancer was terminal. To some effect, being mum to a family that has endured a fair bit of trauma, I have learned to suppress my emotions which is not good. We are a very resilient family and with adult children who are professionals, we are able to process emotions effectly. This breast cancer has been a shock to me. There is a lot of emotion that I hadn’t processed and I found myself getting angry at my mum, even though she is now passed away. I think it’s part of the grieving process and I have asked to see a psychiatrist, mainly because I am on medication for anxiety and depression. My GP is pushing for a psychologist. That’s ok but they can’t manage medication. I think what I have taken from the replies here is that it is still cancer. It is very important to have the radiotherapy to kill off any remaining cells that they have not seen. After radiotherapyi will be prescribed Tamoxifen which I will have to take for 5 years or more. I met the radiotherapy oncologist and I am settled. I do much better when I know what’s going on and I think that’s has been the crux of my reactions because it happened over the Christmas period. It will be ok.2
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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.4 -
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.4
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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!4
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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, Rosie1 -
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.0
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hi @Janine60 have they called you back ?0
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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.0
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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 x1
