Yogibooboo - New Member - Please welcome to the forum!!!
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socoda
Member Posts: 1,767 ✭
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
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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Comments
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Hi @Yogibooboo
You are not a wimp .... a diagnosis of BC is a major upheaval in our lives. I am not on those drugs so can't advice you regarding it ....
you are doing great remember one day at a time.
Soldiercrab1 -
Hello @Yogibooboo
Sounds like you have had a few challenges to cope with and you probably know that support is very important, especially until you sort a few things out for yourself. This is a great place for that.
I have been on both Tamoxifen and Femara since my diagnosis. 2 years on Tamoxifen, before having my ovaries removed so that I could switch to Femara (just over 2 years on Femara now). While everyone does seem to have their own individual reaction to these drugs, I will share my experience as it may be helpful.
I had very little reaction to Tamoxifen except for some fairly major mood swings. Femara had almost a calming effect in comparison! I did have some joint/bone/muscle pain when I changed to Femara. It hit with a bang and I was pretty unhappy with it at the time. I was told that this can take a while to settle (other ladies on here and my oncologist). Sure enough it improved a lot by the 3 month mark and just about disappeared by 12 months.
A bone density scan is a good idea to check how you are situated before you start on Femara. I had low bone density to start and within 12 months it had really deteriorated at the spine and I was diagnosed with osteoporosis. In the last 12 months I have managed to reverse this and actually build stronger bones through a specialised weightlifting program. There are also medications such as Prolia that can help with this. I preferred the exercise program and think this has also helped to reduce my joint pain and stiffness.
The other major quality of life effect for me (from Femara) has been vaginal dryness. There is a good support group on here that can help with lots of practical advice on this side effect. I feel that I have found some things that work for me and while this side of life is not how it was, it is ok again now.
So, while Femara did have more side effects than Tamoxifen for me, I have found ways of improving these so that I really think my quality of life is very good. The main thing is to let your oncologist know the side effects you experience. Many times there are things that can help minimise the side effects. You don’t need to suffer in silence on here. Lots of support and sharing of ideas that have worked for others. Take care and I hope that radiotherapy goes ok. Let us know how you go. xxx2 -
Oh thank you Deanne for your very informative reply. I will definitely keep an eye on things. I’m currently very fit and played pennants (tennis) as well as crewing on yachts (ie. trimming sails) just prior to dx, so sad I’m out of commission for a while. Definitely hope I don’t get the sore joints etc. fingers crossed I won’t have too many side effects.1
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Welcome @Yogibooboo. You are most definitely not a wimp. This is scary stuff. I didn't have any of those medications so can't comment but wanted to let you know you'll find lots of support and advice here on this forum. Best of luck to you.1
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Hi @Yogibooboo , I am 64 shortly.My breast cancesurgery was in March 2017 -lobular LHS luckily caught early - 1.4 cm grade 2. I had a lumpectomy with sentinel node biopsy at same time - 1node microstasis other clear.Margin on tumour was not clear so had a re- excision which provided clear margins.Then 16 rounds of radiotherapy.I pretty much sailed thru as it all happened so quickly and was quite cocooned by all with kindness.The worst bit for me was when active treatment ended after radiotherapy and I felt quite lost and afraid but luckily found this site.Like you I was worried about hormone therapy with Letrozole/Femara .I already had osteoporosis and had had a rib fracture.I have been on Letrozole which is the generic version of Femara which is what my oncologist prescribed.I have read on here the coating on Letrozole may cause problems for some but it has not done so for me.I take 2 Caltrate Bone and Muscle Health - 1 morning 1 late afternoon - the osteoporosis site recommends this dosage for my circumstances.It also contains a bit of Magnesium which many people on here have found helpful although they take more than I do.As I had had a fracture I was recommended 6 monthly Prolia injections by my oncologist but I also exercise - a 1 hour walk daily plus a gentle Stretch and Balance class twice weekly. Initially I had a bit of joint pain - knee , ankle and lower back but found I could walk thru it.Prolia btw is expensive unless you qualify under PBS which I do because of my fracture.I asked my onc what to do about joint pain and he recommended Krill Oil which I also take daily - I find it convenient as it is more concentrated than fish oil which would require me to take several tablets daily not just one. The down side of Letrozole for me has been a sharp spike in my cholesterol which was formerly quite good but I prefer to tackle that with careful diet and low dose aspirin rather than Statins which caused problems for me and many others with memory- after 6 months on them I genuinely thought I had dementia it was frightening. The only other issue I think I am noticing is a tendency to the blues but am hoping endorphins from my walk and awareness may counter. Last thing small tip re radiotherapy. I am very fair and was worried about skin damage .Many on here swear by Moo Goo , I was impressed by Calendula cream supplied at my radiotherapy clinic .Also aah bras are wonderful post surgery no wires/ seams and so comfy. So much more I could say but figure I may have drowned you in enough detail.There are many wonderful people on this blog who will help you if they can - stay in touch .0
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PS I have been on Letrozole 6 months0
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Wow, what you have written about is so detailed and amazing. Thank you I wish you well also. xx0
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Welcome, @Yogibooboo0
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@Yogibooboo, you are most definitely not a wimp!!! Welcome to the forum we are all here for you. Biggest hugs xxoo0
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I am post treatment now and on Tamoxifen. I have learned to live with it. I have bought myself a fishing kayak and although I have yet to catch a fish, I am amazingly pretty good with the paddling.2
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I love to hear the success stories. So many brave and tenacious women
on this website. I'm just plodding through the stages. Had the first
RT consult today seems not too bad. Llistening to the list of possible
things to go wrong is scary but of course I know they have to tell you
these things. (Same with hormone tabs). I'm definitely good most of the
time but seem to slip into forgetful moods here and there, is it info
overload? I cried because I couldn't find something today??? My
emotions are so topsy turvy right now. Thank you all for your words of
comfort and support, it's amazing. xx
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@Yogibooboo, download an app for your phone called Elevate. It is a brain training program that helps with focus and remembering things. My oncologist recommended a similar one for me and I have found that the 5 minutes per day does wonders and I'm nowhere near as frustrated. Xx Cath2
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Thanks, Socoda it really sounds like a good app but I think it's more of an emotional issue than memory perse.
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