I'm so pleased to hear you now have a date to have your tissue expander replaced-fingers and toes are crossed for you that all goes ahead on 12th August. I had been thinking a lot lately, about tomorrow-as it was last 20th July when I had the 1st mammogram that lead to a call-back, which lead to the biopsy confirming Grade 2 Lobular. It's a year tomorrow that my ball started rolling. However, I am fine-and still letting Letrozole do it's stuff before I know what my surgery options are.
I'm going away for a long week-end on the Bank Holiday week-end...to the same place I went last year, the week after my diagnosis. I won a Winnie-The-Pooh on the boardwalk, playing one of those stupid games and he has been sleeping with me ever since. I suppose it's fair to say he's been giving me comfort this last year.
Please keep us updated on the rest of your journey....sending you mucho hugs for 12th August.
Hi All. Can you really believe it was almost 12 months ago that we were all waiting for our September surgeries? Time flies when you're having fun.😜
It brought it home to me when I got my first yearly appointment for a mammogram on my remaining breast - going this afternoon to have it done.
It feels really strange as I've been having mammograms for years and I've always just gone, had it done - no anxieties or worries about the results, but as I'd had a mammogram done 12 months before I noticed the change in my right breast last time I'm wondering if there's been anything 'going on' in my left breast over the last 12 months when we've been concentrating on my right breast so much - will be glad to get it over.
On other news, I've now got a date to have my tissue expander replaced - I was originally told it would be done in April and I'd phone every month to see if I was any higher up the list and then it was due to be done on 29th of this month but got cancelled due to 4 emergencies - I had a complete melt down on the phone to the secretary, crying and asking how much would it cost to go private etc. I'd had my pre op done 3 months ago so I'd be ready to 'go' when a slot came free. Anyway, the secretary was lovely and phoned me back to say i'd been re-scheduled for the operation on 12th August and another pre op arranged for 6th August - so fingers crossed it doesn't get cancelled again.🤞
Hope everyone is doing well, and would love to hear from you all as to how you're all doing. 💖
I hear you loud and clear Helenann. Just don't under estimate the emotional toll this whole thing has had on you. You have every right to be sensitive. Fingers crossed that it's good news for you when you have your next appointment re-your expander. Please keep us updated here...
Hi Marla - thanks for this - you always know the right thing to say.💝.
I do think now, though, that I was not being fair on my husband - he's been really great through all this- and I think the 6 month 'anniversary' was in my sub conscious and making me feel extra sensitive - 6 months is a bit of a milestone I guess, and I just came on here to have a moan (because this is where you can come and say things without being judged)
I think I was also feeling 'unsettled' after my hospital appointment last Tuesday as I got the feeling that I might not get all the 'cosmetic' surgery I was originally promised - to make my breasts more symmetrical - but again maybe I am reading too much into what was being said there as well, and I'll just have to wait until I've had the exchange of implant operation and see what happens after that. I suppose hospital budgets change all the time and when there was 'money' there at one stage it might not be there now.😪 So everything was building up to me being daft and over sensitive to things - but I'm back on track now (until the next time 🤣🤣🤣)
Keep in touch and take care and thanks again for being there.
I feel for you. It may be 4 months since your op and 6 months since diagnosis (I was thinking the same recently-we were diagnosed within a week or two of one another)-and your cancer may have "only" been Grade 1....*BUT* you have been through an ordeal; a mastectomy is a big operation, and sometimes it is only months later that we experience the full range of emotions. And let's not forget how wonderful (not)! Letrozole makes us feel. So, don't give yourself a hard time for feeling "sensitive" to those comments. Nobody likes to have their cancer compared to other's and I truly believe that regardless of Grade, or even Stage....the emotional response for all of us is the same!!!! We all experience the same feelings....Grade and Stage separate us all but the emotional implications bond us all. So tell your hubby to put that in his pipe and smoke it.
Sending you lots of love....
Hi Annika - thanks for the kind words. You are right, so today I have picked myself up, dusted myself down and put my positive head on again (anyone remember Wurzel Gummidge - ha ha).
It was 6 months yesterday that I received my diagnosis and I have had very few times of feeling sorry for myself - no doubt there'll be more 'down' days - but for now I'm back on the positive path and just can't wait to get the date for my exchange of implant operation - which will be another step closer to getting some normality back.
Sending love to all.
Big hugs to you. You are a bit further down the line than me as I am just awaiting the operation date but I have grade 1 in one breast as well and DCIS in the other. So far it has been a roller-coaster of emotions and sometimes I felt like I should not be upset becouse it could be much worse. But why shouldn't we be upset, it is a cancer, before you have time to somehow process the diagnoses you have to decide what is going to happen next, yes we choose masectomy but just becouse we are doing it it doesn't mean we are OK with it and happy for it to happen. We all have our own reason for our decisions and there is no right or wrong. We are doing what we think is best for us at the time. I know that's what I need to do to have the best chance of not going through it again but there is no 100% that it won't happen again, and the matter of masectomy is another massive, incredibly sensitive and incredibly upsetting thing to go through so yes we have as much right to be upset as anyone else going though the same or similar process. I still have a good cry every few days and to be honest I don't care if others think I am overreacting It's how I feel and what I need and I still have long way to go so probably will have many more moments of weakness but I feel entitle to it and so should you. Your husband probably is trying to reassure himself as much as you. My partner way of coping with the whole thing wasn't very helpful at the beging but he is trying to be supportive in the way that he knows how to and that is what matters. I am not very good at telling him what I need either, it is not just difficult for us but for them as well. I am still trying to process everything that happened in last few weeks myself and he is extremely positive about the whole thing and we clash sometimes but what good would it do if we both would cry ...
Anyway the point I am trying to make is cry when you need, be upset when you feel like, it is your life, your body, when you ready you will feel positive but don't feel bad if you not. It will take as long as it needs for our wounds to heal and I am not talking about the physical ones, the emotional ones might be much dipper xxxx
Big hugs ❤️
Hi everyone - hope everyone is getting on OK.
I was back at the hospital on Tuesday to see about having my expander exchanged for a 'real' one. I signned all the consent forms etc but it looks like it will be April before I get a date.
The consultant has asked if she can take photo's of her 'handywork' to use in lectures etc - which I've agreed to, so at my next appointment in March she'll take some photo's. She said she wanted a 'variety' of results from great to not great (don't know which she'll use mine for🤣🤣🤣)
On another note - I'm feeling very emotional at the moment and I don't know why - it's over 4 months since I had my mastectomy and you'd think I'd be used to it by now.
I think I might be being over sensitive but I was upset today as my husband said I was lucky that my cancer was 'only' grade 1 and hadn't spread and how awful it would have been if I'd had to have chemo. (an ex work colleague of his has been diagnosed with a brain tumour and he just keeps going on about how awful it is for her with 2 young children and the gruelling treatment she's going to have - and it is awful but I'm still 'suffering' and going through reconstruction, hormone therapy etc etc. ) - MAD, I know - I have to get a grip.
Sorry, folks, not having a good day. I'm fed up of being the 'positive' person at the moment😪😪😪
You are absolutely right. It is so easy to compare, not only in terms of treatment, but also regarding our prognosis. We are all individuals and we must have faith that our oncologists are going to try their very best to go for a full cure, and carry out treatment that they believe is in our best interests.
I wish you well
Awwww...thanks very much Jane for the 👍. xxx
To put a different slant on the above...I'm only too aware that the nature of BC is such that it is very easy to get competitive...not necessarily with the *intent* of wanting to see oneself or another's situation as better or worse, but the very fact that we all share our own diagnoses, stories, experiences, treatment plans...lends itself to comparing notes, even when it's unhelpful. And it has become very obvious to me that different teams/surgeons/oncologists work differently and therefore make different recommendations, and we mustn't get into the habit of thinking "mine is right and yours is wrong" (or vice-versa). What is right for one, may not be right, or may not work, for someone else.
We should all be using this forum to inform ourselves, and to help us make better choices-the right choices for *us*. Not to compete, or put doubts into someone else's mind as to whether their team knows what they are doing, etc. (I've digressed slightly-sorry) .
Just had to comment on what a fantastic post. What wise words.That post is going to help so many people.
Wow-it sounds like you've had your hands full with mum's health and your housemove, on top of your own health issues! Never ever say or think "others have it worse" (or others had to go through a lot worse)-you know why? Because it will make you feel bad for feeling bad. Everyone's problems and situation are as important as another's and the truth is that there will always be somebody who has it a lot worse, but also others who don't. We all matter. We are all important and we are all suffering in our own way.
So pleased to hear that you've got support for your depression.
Good good luck with your house move tomorrow and I hope your first night sleep in your new home is a positive experience.
I'm so thrilled to hear you are doing well and had your last fill of your tissue expander-hurray!
I'm so behind in replies on here-I've just come back from 2 weeks in the Canary Islands...a well needed break but was sick from Day 3 of 14 and am still congested!
I, too, am struggling with low mood on the Letrozole but am trying to apply my own therapeutic tools on myseld "therapist heal thyself". My NY resolution is to DO LESS. I realised whilst on holiday just how much pressure I put myself under at work, and at home (keeping up with chores, tasks) and I do think it has been killing me.
Like you Helenann, I've been off work since Oct. and admittedly I have felt slightly a "fraud" given I never had surgery in the end, but the whole emotional trauma of this diagnosis, and "you're having surgery" to "I'm not ready for surgery" has really thrown me. I thought I'd be able to take my 2 weeks away and just process the last 3 months but truthfully I think I was in avoidant mode whilst away (though am trying to be forgiving of myself because I *was* so poorly). So this Christmas is going to be a quiet one...not having family visit and not visiting family (they are abroad)-it's my choice, and I feel good about it. I just want some "me-time" and time to think, and plan, etc. I am also hoping to move house (if I find one I like) next year so that's also a priority and a time consuming one.
I love hearing how you are doing, and if we weren't all so spread out across the country I'd suggest a get together over Christmas....would be lovely to meet some of you in person. Perhaps we can organise something well in advance so those of us who need accomodation can arrange it.
Sending lots of love....
Wishing you luck with your chemo. Just wanted to let you know that I used the cold cap throughout my chemo and I kept about 60% of my hair. If you decide to give the cold cap a try, then I would advise that you take painkillers half an hour before, and try to withstand it for the first ten minutes. After that, it becomes more bearable.
My hair was thinner but remained just below my chin. I finished my last chemo on 10th October and my hair is growing back at a rate of knots! I had it cut into a short bob today, and everyone says you can't tell I have even had chemo, as it now looks much thicker as the more 'wispy' longer hair has been removed. I have been using ' mane and tail shampoo' which you can get from Amazon or Boots etc and it is meant to promote hair growth.
My radiotherapy starts on 18th December. Like you, I feel it's a pain before Christmas and I was ready to start it earlier but they hadn't got any availability. But it's another thing to tick off.
Best wishes with your continuing treatment.
start chemo 20 December!!!
Glad to get started, but it's a pain it's before Christmas. But rather then than wait until 7 Jan. Saw the oncologist today, having a think about whether to do 3 FEC then 3 FEC-T or just to stick to FEC.
Appointment with hairdresser for Wednesday to get my long hair cut very short!
Kateday - so sorry its so horrible for you 😪- how many more 'sessions' do you have to have? I agree about getting loads of sleep -will do you the world of good, and also I agree in lots of ways time seems to stand still yet flies by at the same time. I find myself wishing my life away some times waiting for the next appointment so I can move forward a little more.xxx
Pastasmissus - You've been through the mill for sure - glad all the surgery is done. Good luck for tomorrow 🍀- be sure to let us know how it goes. xxx
Having had the original mastectomy in Sptember, they then found cancer in the other breast on MRI and biopsy. So ended up having another mastectomy with ANC of the original side in November. Go to see oncologist tomorrow to talk about chemo and radio. At least that's the surgery finally finished with!
Hi Kateday, Marla and all you lovely September ladies.
I'm doing well - have had my last fill of my tissue expander - now just waiting to get it replaced with a permanent one, which will be Feb or March next year.
I'm still off work but am looking to go back early in the New year.
Kateday - hope you're 'coping' with the chemo and good luck for the genetis results - be sure and let us know.
Marla - how are you doing on the Letrozole? Have you had the DEXA scan yet?
Keep in touch everyone when you can. xxx
Hi Alex - so sorry to hear about your Mum - you've been put through the mill, for sure. Hope she's on the mend - and hope you're doing OK as well.
Keep in touch when you can.
Sending love and hugs.💖😘💖
Hugs to you and your mum Xela-so sorry to hear about her hip. I hope she is being well looked after by her own doctor and hope she makes a full recovery.
I hear you loud and clear re-your ovaries and womb....it sounds like you are in control of things Lorraine! .
I hope you have a lovely week-end...
both gynae and breast care are recommending ovary removal. They may have just left my fibroids alone or monitored them if it wasn’t for the breast cancer.
I’m 51 and my husband has had a vasectomy so pregnancy is not on the cards!
I have 2 lovely children and think my ovaries and womb have served their purpose!
I hope you are well following your surgery and treatment xxxx
Good point PastaMissus! That's what I wondered...whether the purpose of removing L's ovaries are to reduce estrogen production and it sounds as if it is. xxxxx
Hi Lorraine, OK-good! I just wanted you to be aware of all options but you do sound switched on! and great to hear that the procedure can be done laparascopically. I, too had many fibroids and still have at least one (too close to my bladder to remove safely). My consultant had told me I had a fibroid factory. I had 3 procedures (2005, 2009, 2015) to have them removed. They kept growing back (I had not gone through the menopause yet) and estrogen apparently helps them grow, so I am hoping that now I'm on Letrozole, and post menopausal, they may shrink. I've always had a "bulky" tummy-as if pregnant, as a result of my fibroids.
Good good luck with your procedure.....sending lots of love...
It's not the fibroids that are the issue with the breast cancer, it's the ovaries. Leaving the ovaries means oestrogen keeps getting produced. If you remove the ovaries you remove all possibility of future pregnancy anyway.
I have been told by my consultant that the whole hysterectomy should be possible via laparoscopy.
I have lots of little fibroids lining my womb and one big one. Unfortunately, I don’t think removing them is an option. Thanks for your advice and information.
I’m reasonably happy with my decision but will continue to read up before I go ahead,
best wishes, Lorraine xx
Thanks for the additional info. We're the same age and I, too am Estrogen +.
OK-so a cricket ball is a fair size, and this might mean that it is too big to remove laparascopically, *however* it *is* possible to shrink fibroids such that they can be removed laparascopically; you can ask your doctor about this. Here is some info. about this:
If it is your decision to have the hysterectomy, then please disregard the above. It is 100% your decision; I just wanted to share with you my own experience because for many women, depending on size of fibroids, etc. it *is* possible to remove them without having to have a hysterectomy & we should always be advised about *all* of the options open to us.
As an aside, my mother had a hysterectomy (1982) at the age of 39 (she, too had fibroids) and obviously could not have any more children (I'm an only child) so I feel very strongly about women having options and knowing the full story about their individual situations before they agree to have a hysterectomy.
Re-the menopause: there is a hormone (blood) test they can give you to determine where you're at. I'm most definitely post menopausal and so Letrozole was the obvious choice for me re-hormone therapy & it makes sense you are now being prescribed Anastrozole.
one of my fibroids is the size of a cricket ball. I had a coil to alleviate heavy bleeding but that had to be removed due to BC and mastectomy. My cancer was oestrogen positive so gynae and my breast surgeon think ovary removal and switching from tamoxifen to Anastrozole will be better for me.
(I’m 51 and they are unsure where I am regarding the menopause as the coil was masking my symptoms).
Thanks for your advice xx
I don't know enough about your situation (age, detailed medical in's and out's) but for what it's worth...I had (and still have-they keep growing) fibroids, and have had three laparascopic myomectomies to have them removed...all done by a fantastic surgeon in London who specialises in keyhole surgery. I was able to avoid a hysterectomy. Mine were not cancerous either and I chose keyhole surgery so that I could still preserve my tubes/ovaries/uterus. There may be a reason you are being advised, or are choosing a full hysterectomy but I thought I'd mention it because there are a handful of surgeons who remove fibroids via keyhole surgery and they can spare you the tube and ovary removal.
Just back from my gynaecology oncology appointment.
We discussed full hysterectomy inc tube and ovary removal - due to a large fibroid and ovary removal will mean I can switch from Tamoxifen to Anastrozole.
They will try to push for an appointment soon as I am still off work and have been advised that it is better to have one prolonged period of sickness than 2 shorter ones.
There may be a wait of up to 3 months! They are not as speedy as breast care.
Can any of you lovely ladies give me and tips and advice about the surgery?
Also Tamoxifen/ Anastrozole.
I have had great advice from my hospital but it is good to hear from people who have been through it, or are taking the medication.
Thanks very much Helenann! My father is here and leaves on Sunday. I'm really happy to hear your osteoporosis was picked up and is now being treated. You have prompted me to ask my oncologist (again) re-a bone density scan. She doesn't seem in too much in a hurry to check it out.
Thank you for the welcome Helen,
my reconstruction was the Braxon over the muscle type. I’m pleased with the results visually but they do feel strange. However, they are gradually becoming normal to me.
I’ll post information about my hospital appointment tomorrow, it may help someone going through similar.
take care, Lorraine xxx
Hi Lorraine - you're more than welcome to join us here on Surgery September - a shame you didn't find us sooner - but I'm sure you'll find us very supportive of you as you move forward. Its been a life saver for me at times.
If you think of anything you would have liked to say or ask as you were going through surgery feel free to do so now - and if there's anyone can help they'll be along before you know it.
I had a right mastectomy on 24th September with immediate reconstruction - tissue expander type, so ongoing at the moment. No chemo or radiotherapy either - I'm on Letrozole - and diagnosed with osteoporosis yesterday so on some other meds for that.
Good Luck for tomorrow - come back on here and let us know how you got on.💖🍀🍀🍀
Hi Marla - thanks for your reply to my 'woes' - talking loads of sense as usual - having had time to reflect and look things up on osteoporosis it might be a blessing it was found now - and it is getting treated - so all good. Have a great time with your Dad.(I seen on another post he's due over here soon💝) xxx
I had surgery in September but I didn’t find this forum until a week ago.
Ive just found this page and read through most of the posts.
It is reassuring to know there are others ‘like me’ out there 😊😍
I had a double mastectomy with skin and nipple saving reconstruction.
Histology came back as grade 1, 2 tumours, biggest 7.5mm
No radiotherapy nor chemotherapy.
I’m taking tamoxifen, healing well but did have a localised skin infection a few weeks ago and panicked that my body was rejecting my new boobs,
I find out tomorrow whether I need hysterectomy, tube & ovary removal (fibroids not cancer)
I’m mostly feeling positive, not emotional and trying to get my fitness levels up a bit.
Wishing all of my ‘September sisters’ well, Lorraine xxx
I'm so sorry to hear about your Dexa scan result and hot flushes. I know it's easier said than done but try and keep it all in perspective-the osteoporosis is treatable and the hot flushes will hopefully diminish, and in the meantime it's important that we all find ways of managing them....I go to sleep with a t-shirt on and by 3AM I've whipped it off, as well as my duvet. I have a ceiling fan & an air purifier blowing in my bedroom and they do help very much with the warmth. I've always been hot when I sleep so it's hard to know whether it's a flush or whether it's just me. During the Summer heat wave (and before Letrozole) I used to sleep with an icepack wrapped in a face cloth...it really helped. I put the icepack between my knees, or sometimes on my tummy...it really kept me cool. It may be worth a try (but do place it in a face cloth or thin towel-not directly on your skin).
All this to say-I empathise with you, but at the same time, we need to keep these other issues in perspective. You've had the cancer removed-yay! That's a really BIG yay! . And you've got a nice new boob (in progress). Keep reminding yourself of what you have to celebrate...I know it's hard...especially when you're sleep deprived.
Sending lots of love...
Just thought I'd post a quick update - went for my final fill of my Tissue expander today - so the next step will be in 3 months when I'll be discussing the exchange to a permanent silicon implant and subsequent treatment re nipple reconstruction and 'work' on my 'good' side to make me more symetrical (hopefully).
The results of my DEXA scan had been received and low and behold I have Osteoporosis! I can't believe it - what else can go wrong?😪
I now have to take a bisphosphonate - alendronate, as well as the Letrozole and Adcal - feel like I'll be rattling at this rate.💊
The Letrozole wasn't too bad at first but now 4 weeks on I'm getting hot flushes of a night - so not sleeping too good and am very achey all over.
Sometimes wonder when's its all going to end.😓
Thanks Helenann-we have indeed been together from the start & I hear you loud and clear. I, too, was told what needed to happen and at the time the message was conveyed to me, it did *not* sound like there was an alternative....it was all said very much "in small print" if you like (oh, by the way...we can start with Letrozole and then see). The message that I got was "you need surgery *but* if you start on Letrozole, there is no hurry for surgery". As I elaborated on a different thread, I just decided to plan for surgery to get it over with but in hindsight I wish one of my medical team had slowed me down rather than me having to slow myself down.
We have all learned so much about breast cancer since diagnosis, and this forum has also helped us all to understand that there are different types, different grades/stages and a variety of treatments that we don't all get in the same order/sequence. Yet it is so comforting to know that others "get" us and are supportive of our individual and personal decisions.
Chocxie: I, too, relate to the "hello, it's me who has breast cancer". I have little tolerance at the moment, for friends and family who feel compelled to dump all their stuff on me any time we speak. I wish more people understood that a friend telling you about ther breast cancer is not an invitation for you to tell them how crap things are for you too. And in turn, it causes us to "shut down"-when a person has an illness like depression or breast cancer, they genuinely have little left in their reserve of energy....I have some friends who text to ask how I am and within a message or two dump all their crap on me (and I mean....not just "I'm feeling low today") but the in's and out's of their situation. I *want* to say "I can't handle any more right now" but how do you say this without sounding like a complete b-tch? I have a friend who has been going through a dififcult time for over 3-4 years and I have listened to her for hours on end, on the phone. Since my diagnosis I had been avoiding her (and didn't tell her about my BC at the beginning) because I just couldn't cope with her stuff as well as mine. She has been messaging me more now that she knows about mine and I just know that if I ask "how are you" it will open up pandora's box again. It was genuinely 90/10 as to who was dumping and who was listening....me the 10%! I wish more people would just use their common sense-when you have a friend with depression, *or* breast cancer, understand that their reserve for listening and soaking up all *your* stuff is limited, and will be, for some time.
Hi Chocxie- thats brilliant news for you - also a bit worrying to think if they hadn't done the Oncotype DX test you might have been started on chemo as matter of course - and you now know this would have a detrimental effect on you. Good luck on the trial you're doing - it must be 'good; to feel you're helping the way forward for other's in the future. That book sounds interesting - might see about getting a copy myself.👍.I hope you're feeling a bit better emotionally today - I am - but who know's how I'll feel tomorrow - I'm all over the place at the moment. My husband has been great - he tells me not to 'bottle things up' and I should let him know what I'm feeling - but I'm so used to be the one who doesn't usually crumble and at 62 years of age (a young 62 i might add😉) i'm not likley to be able change the way I am. I just might consider professional counselling at some time in the future if things don't get better- I might be more able to open up to a 'stranger' .
Kateday - I'm so sorry you're feeling so rough - can you mention how bad it's made you feel at your next appointment and they might be able to do 'something' for you? Isn't it mad the way it's come out that we've all been putting a brave face on things for our friends and family's sake. When I told family and friends of my diagnosis I was quick to add 'but its been caught early, its treatable and I'm going to be fine' - when I didn't know at that stage whether I would be fine.
JacqB - give up wine??? Is that even 'a thing'.🤣😂🤣. Not a chance.
Marla - we've been 'together' from the start - I think we were originally on much the same path but then we went our different routes. I think your story is inspiring because you didn't just go along with what was being suggested by your team. You questioned things and looked into things and made informed choices for what was in your best interest (with the blessing of your medical 'team'). Dont worry that you feel you might have got me wondering if i should have done things differently - my case was different to yours (it was in different parts of the breast and some IDC as well as DCIS), so I'm 100% sure I would have opted for the mastectomy in any event.
It's just that when I look back to those early days I think I was in a blind panic about having breast cancer - although it was seeming like I was calm and collected about the whole thing - I was like a duck seeming to be gliding along the water effortlessly when in reality they're paddling like hell underneath. I can remember being told what needed to happen and I just nodded and said 'sounds like a plan' - I just feel now maybe I should have taken a step back to think things through - as I say, though, it was always going to be a mastectomy for me.
Great idea about yourPh.D by the way - and if you need any input on the topic we're all here.
Alex - if you're reading this drop a little post to update us on how you're doing - we miss you💖
A huge congratulations on your low oncotype Dx score. That's such a relief that you won't need chemo-one less thing to worry about. I"m really pleased for you, and also pleased to hear you're part of a trial-I think that trial participants are usually well looked after which is always good news!