Breast Cancer Now Forum

Thanks Janro, glad to hear it worked for you - and is ok to use! Lisa xx ... View more

WMMHT: making iced tea and having the energy to do some housework. Sad, I know! Now watching Indiana Jones so life is good. ... View more

It never rains, just pours... Gynae referral postponed as I couldn't get to see my GP this week - collapsed in the shopping centre last Sunday with another giant pneumothorax :(Who knew that shoe shopping was so dangerous 😉 Three days on a chest drain and suction and all is good (ish - enough to send me home for the weekend as surgery wasnt possible last week) but I have to go back in next week for VATS and pleurodesis on Wed. I am not looking forward to it one bit - the pain was awful with the drain, ESP with the insertion (which took much longer than normal), even with a lot of local anaesthetic and morphine. Guess I have recent rads to thank for that, all the nerve sensitivity and adhesions all over my lung 😞 Am expecting a miserable, painful time of it, but hoping the positive step of getting my lung looked at properly and hopefully fixed will help in my recovery. At least it is (planned to be) only keyhole surgery, and am have been offered a place on a pain management trial at the same time as having my op. Hopefully I won't just get the placebo...! Is there anyone here had VATS pleurodesis and can offer advice or words of wisdom on coping - I was going crazy last week and very tearful all the time 😞 (I realise I have taken my own thread off topic, for that I apologise. I just didn't feel important enough to start a "news about me" thread but wanted to update those of you who kindly ask 🙂 Thanks for being there ladies!) Have a healthy weekend ladies, Lisa xx ... View more

Interesting piece, thanks for sharing! Before I had my first (and only) chemo, my onc and BCN were quite insistent I have it. Then, when I quit, they told me that as I am strongly ER+ the tamoxifen and rads were the best combo to reduce the risk of recurrence and control any stray cells. I have also since heard that rads to the axilla is the preferred option over ANC (I only had SNB at the time of my WLE)??? Lisa ... View more

Hi Jaybee, I too am feeling much older and creakier on tamoxifen, which I've been taking since Dec 2012. in fact, I felt so rubbish I started a thread on here just like you to see if I was alone! It's called"Tamoxifen and feeling really, umm, not right??"if you fancy a read. I don't think I mentioned specifically my hip and knee pains and creaks, but they are killer. I can't climb stairs without a really sknee left knee coming on, and I daren't run across the road in case it gives way 😞 Once I am sitting down i dont want to get up as i know something will hurt/it'll be an effort. I feel 84 not 34 some days! I also have a big cyst in my pelvis (maybe due to the tam, never had them before) which causes sciatica like pain and general misery. So anyway, it wouldn't surprise me if your symptoms are tamoxifen related. If you're worried about bone pain you might want to ask your onc for a bone scan. My bones don't hurt, and my last scan (earlier in the year) was clear so I guess it's just dried out joints from tamoxifen. The scan did say I have "degenerative patterns" Iin my feet. No idea what that means, but it's not mets. Chin up, one day at a time. Much love to you. Lisa xx ... View more

Hi Penny, Elinda, Thanks for your replies and encouragement! I am so relieved that it is "only" a cyst. Will certainly ask the gynae if it might be due to the tamo and see what they can do to manage the pain if not the thing itself. Yes, I think I was really lucky to have a sonographer who had patience and time to listen to me and not just do what was requested on the referral sheet. I felt a bit guilty at telling a little white lie when she asked if I had mentioned my pelvic problems to my GP; I had forgotten when I saw my GP and he made the US referral, but I figured I was there anyway and seemed silly to have to get amother referral when she had time as it wasn't busy. As you say, Penny, it isnt worth suffering in silence when people can help. Phew, I guess it might've been different if they were fully booked yesterday and I would still be wondering. Just hope she (and I) don't get into trouble over it! Elinda, your track record is good so far so I wouldn't be surprised if you are right about the back/shoulder pain being related to less activity and treatment too - it is the same side (right) as my recurrent pneumothorax and the bc which was treated with lumpectomy, SNB and rads to breast and axilla. The tumour was quite deep, around 10cm in, so getting close to the chest wall (I have small breasts) so the tissue damage after survey and rads would have also been quite deep. I have not been able to do as much as before tx, both from aching and the tiredness; my joints do ache and crack much more than ever before which is probably a combination of treatment and being less active. I am having a look into yoga/pilates at my gym (I joined in May this year, my first ever memberhip, pay £50 a month and have only used it a handful of times... typical! Might as well try a new class!) as that might help with the stiffness and aches. I'm trying to be patient and give myself time. A lady at work had bc 16 years ago and today she said she still hurts from time to time (mostly from her ANC though, and I'm not sure if she was a mx patient or lumpectomy and rads). Have a lovely weekend ladies, I'm off to put my feet up with a cuppa! Lisa xx ... View more

Hi ladies, Just a v quick update on me in case anyone is interested or it can help someone else in the same boat. I had an abdo U/S today to check for gall stones and look at my liver - all fine there 😄 No explanation of the upper back/right shoulder pain and creaking, mind. While I was there I mentioned my pelvic pain, feeling uncomfortable/full in my lady parts, and spotting and the sonographer took a peek... Elinda, you were spot one with the cyst! Well done you!! A 7cm cyst originating from my left ovary!! Anyway, all looks B9 and just a "simple cyst". Waiting for GP to refer me to gynae; they might drain it but if not will keep an eye on it over the next 6m. I don't know if I can blame tam, and a cyst isn't reason enough stopping taking it, but I haven't had cysts before. So there might be some causal relationship. Although I know cysts are common in non-tam women, and there is some history on my mum's side of the family. Why don't parents tell you these things before it happens! 🙂 But I guess we know what caused the spotting, cramps and maybe even the sciatica I've been getting... Such a relief it isn't anything else! Lisa ... View more

Well done Sam, glad you are home safe and sound! Rest and recover well, Lisa xx ... View more

Hi Liz, If it helps, I bailed out of FEC-T after only one FEC. Will it make a difference on my long term survival or risk of recurrence or new primary? I don't know, but will let you know if (God please forbid) it happens... To put my decision into context, I had IDC with a bit of DCIS; tumour was 1.5cm (i.e. "T1") when they did my WLE. I had a micromet in one of four nodes sampled at SNB (which they did with my WLE so only one op). The pathology report also showed LVI; my margins were apparently clear at 3mm (the deep) and 1mm (the anterior) - I didn't think what was enough to say they were clear, but I'm no expert! I was grade 3, and 33 years old at dx last August. I "N1" owing to the micromet which was 0.6mm. No distant mets found prior to my WLE and (so far!) no sign of anything new. I am ER+ 8/8 and had radiotherapy in spring, now on tamoxifen. When I first met him, my onc told me that chemo was needed as my cancer was "on the move", i.e. because of the micromet rather than LVI as far as I understand it. He said my 10-yr survival stats were 5-10% higher with chemo than without. However, I only did one cycle of chemo before I told him mentally/emotionally I couldn't cope with more. He then said "we'll, you did one" and he and my BCN said surgery was curative and rads and tamoxifen were more important than chemo in regards a recurrence and keeping any stray cells under control. They really don't seem fussed I didn't finish, and another BCN has since told me quite a few ladies decline or don't finish chemo I even when grade 3. So I think they saw chemo as an extra insurance policy owing to my age - they said they wanted to give me the best chance of another 30 years of life (I didn't ask why only 63 years in total was ok - and that was before chemo brain too!!). But there aren't any guarantees with this beastly disease - we rely on stats and maths rather than science I think, as we dont know how many cancer cells and where they are in our bodies, or if they will grow uncontrollably into a tumour, and even with chemo we aren't "immune" to new cancer or a recurrence. I may have taken a risk by not completing chemo, but as I am still "chemo naive" it's still an option should I have a recurrence or new primary. Plus I have tamoxifen to rely on. I hope your rads goes well. I'm four months out and still get stiffness/tightness under my armpit and across my breast, plus a lot of fatigue, but it is getting better slowly. I would say it was worse than surgery - hopefully that means it has done some good! Best of luck with your journey. Lisa xx ... View more

Hi Sam, I don't know how well my situation compares with yours, or how my pathology differs. But I can tell you about me in the hope that it will help you while you are waiting to hear from your onc. I had IDC with a bit of DCIS; tumour was 1.5cm (i.e. "T1") when they did my WLE. I had a micromet in one of four nodes sampled at SNB (which they did with my WLE so only one op). The pathology report also showed LVI; my margins were apparently clear at 3mm (the deep) and 1mm (the anterior) - I didn't think what was enough to say they were clear, but I'm no expert! I was grade 3, and 33 years old at dx last August. I was stage 1 but "N1" owing to the micromet which was 0.6mm. No distant mets found prior to my WLE and (so far!) no sign of anything new. I am ER+ 8/8 and had radiotherapy in spring, now on tamoxifen. When I first met him, my onc told me that chemo was needee as my cancer was "on the move", i.e. because of the micromet rather than LVI as far as I understand it. He said my 10-yr survival stats were 5-10% higher with chemo than without. However, I only did one cycle of chemo before I told him mentally/emotionally I couldn't cope with more. He then said "we'll, you did one" and he and my BCN said surgery was curative and rads and tamoxifen were more important than chemo in regards a recurrence and keeping any stray cells under control. So I think they saw chemo as an extra insurance policy owing to my age - they said they wanted to gove me the best chance of another 30 years of life (I didn't ask why only 63 years in total was ok!). I may have taken a risk by not completing chemo, but as I am still "chemo naive" it's still an option should I have a recurrence or new primary. Plus I have tamoxifen to rely on. If I was triple negative I think my onc would have been more insistent over chemo (I am not sure if you are ER/PR/HER+ or some/none). I don't know how things would have different if I was T2 (2-5cm tumour), but I suspect a 6mm node met. is the more important indicator for chemo. Good luck in whichever path you and your treatment take. Lisa xx ... View more

I have been under the care of Charing Cross for chemo, but had my surgery and have both my surgical and onc follow-ups at my local (Ealing) hospital. My surgeon, did an excellent job and the scars are barely visible, just 9 months later. That said, part of me wishes I'd taken my GP's advice and asked to be referred to the Marsden. I found my lump while in Ealing hosp for an unrelated matter, so didn't go through the usual route for referral, via GP. I didn't really feel I had a choice of treatment centre as they jumped on my cancer sharpish at Ealing. Charing Cross sometimes gets bad reviews; I can't really fault them, just feel I might have been even better off at the Marsden. Good luck with wherever you choose. Lisa xx ... View more

Hi Jenny29, i think you're right about the brand, it's all generics in the UK now. I normally take Wockhardt which I get from Boots; when Superdrug filled a script a few week back it was Relon and I didn't like it so am back on W now. Fatigue and feeling awful still not better - so somehow I feel "better" on the same brand, in terms of anxiety about brand at least! Thanks for sharing your experiences; hope you have an ok run on tam this time around. Lisa xx ... View more

Hi Cress, Thank you for your reply, it was really helpful reading. It is good to know you understand where I'm coming from - I thought I was being a loon! I wish my sister could see and listen - not necessarily to change her mind, but to have a bit of sympathy for my situation and concerns - and step off the pressure somewhat. You make a good point about not wanting to go through treatment again - it was (is) hell and I've "only" bc once - and only stuck chemo for one cycle. I wouldn't want anyone to have to go through tx, not even my worst enemy tbh. My sister is a mental health nurse and med student in her final year. She is very analytical when it comes to my condition and tx; I think the wondering if she might be at risk is eating her up in some respects, as she has seen how badly I've coped with it all. When I said I thought that it was good Jolie had been public about her surgery and that it made sense to go through it, she just shrugged it off and said she wasnt special and loads of women before her had done it, no big deal. I think it is a huge deal, and wonder if that was just her defence mechanism, as she is frightened? I don't think she appreciates how I feel, she just wants all the facts so she can work out how it affects her and her life plans. I'm trying not to retaliate by being a jealous sister and take that control away from her, if it would be cutting my nose to spite my face. She says the family is drained from my having bc (they should bloody well be me!) and that she wants to do whatever she can to reduce her risk. I am a scientist by training but have turned into an emotional wreck over my own bc and not seemingly able to stay calm and make rational decisions! I think I just need to feel I am making the decision for me and that it would be a bonus for her, not that I am railroaded into the test! I don't know how it would affect our relationship if I am positive and she negative - I don't think I could stop myself feeling bitter/resentment that I got the bum deal of the two of us. But perhaps better to know in order to make informed decisions about surgery - and better screening as you say if I am a carrier. We each have our own journey to make and I am sadly accepting that mine isn't what I always wanted it to be. My sister is always off travelling and on exotic holidays whereas I can barely make it round Tesco these days 😞 I'm hoping things in the next life are more in my favour!!! I am looking forward to my counselling session so I can go over all these issues with the team and then feel better able to decide. Thanks again to you all. Lisa xx ... View more

Thanks Penny, as if we don't have enough to deal with eh! Glad ACAS were able to help you; I will get in touch and see what they say. I know I'm heading for more trouble; the tamoxifen brain fog doesn't help my work efficiency or quality so I can understand they want to get rid of me. My boss and a another colleague on my level are looking at restructuring the team... I think I know wheat that means... I've not been keeping a diary of events but will start now. I was referred to (in jest?) as a malingerer, right before a return to work review. There was also the time I heard someone say if I could play squash then I can work full time (exercise to combat fatigue, and I hardly got out of breath). They somehow think my fatigue is related to my collapsed lung (it isn't at all, I had the lung problem for month before bc dx and had no fatigue!) and don't recognise cognitive impairment or fatigue from cancer treatments. I keep being told I look ok, so they don't understand my fatigu xx ... View more

Thanks Jo, I tried to call earlier but just missed opening times. Will try again tomorrow/Friday as I'm sure it'll be helpful. Thanks for you reply, philomena. It sounds as though you've had a bit of soul searching to do in regards your youngest. Cancer is a heavy burden to carry, and I imagine even more so if a parent knows they may have passed on a gene mutation to their child. If you are positive, I suppose you can choose when to tell your children and help them when the time is right. Months ago I gave my sister's genetics team my consent to access my medical records and histology report. But it's more recently I have been struggling with the "what ifs", and I can't really convince myself of the benefit of finding out either way - if I were to be positive and don't use the information for good i.e. to make my situation better/safer/less likely to have another cancer then what's the point if having it? If I'm negative my sister stops worrying and goes back to her happy life, but I'm still going through the hell of treatment; if I'm positive then I might have another cancer or a recurrence, and she might be positive too; if I'm positive and she's not then I get more worry and decisions and she's back to her happy life with no health worries. In typing that I realise I do resent my sister for not being "the one with cancer, depression or a collapsed lung". My life has been quite frankly pretty rubbish since dx last August and there's no light in sight or any sign of me being able to get back to normal. We have always been really close and I love her to bits, but I can't help feeling jealous that my sister has a wonderful life and I'm stuck with the bad luck/genes of the family and dealing with the isolation and general crapness of cancer. I know that having more info about my cancer will give me more control and the ability to make informed choices - and her too. it's the impact on me mentally I'm concerned about. She just wants to know if she's likely to get cancer - the green eyed monster in says keeps shouting that I didn't have that luxury, so why should she. But it isn't a certainty if I/she is positive, just a risk indicator/statistic. I just have to keep telling myself that! 🙂 Sorry, moan over. Getting that all out helps somewhat 🙂 Lisa xx ... View more

Hi Elinda, Pesky computer... Thanks for taking the time to re-type your reply! I am seeing my onc on Monday and will talk severe fatigue, brain mooshiness, spotting and awful pelvic cramps. I have the abdo ultrasound booked for Thurs to look for any gall bladder/kidney/liver issues that might explain my pains and feeling rubbish. I'm not sure if the ultrasound will also look for cysts or womb thickening. Sounds possible - I was clear before tamoxifen so we will know the cause if any are there now! I will mention womby things to the onc and see if I need a different appointment/test from him. I think you might be right about joint pain in my back/shoulder area from the Tam, and/or reflux, especially as it is worse after alcohol. Hopefully not my liver packing up 🙂 I have decided to come off my antidepressant (mirtazapine) as it only makes my sleepiness and fogginess as worse, and I'm not coping very well with the side effects (e.g. restless legs at night) of that either. I just hope my depression doesn't come back, and that I start to feel more alive soon. My psych says my lethargy is depression, but I'm pretty sure it's medication related. As you rightly say, fatigue is a known SE of tamoxifen. My psychologist also reminded me that 4 months post rads isn't very long, and even just one chemo can have effects for months/years afterwards. It takes ages to get over treatment, I know. Maybe I'm just being impatient or too hard on myself. But I don't like the new me 😞 On top of all this, my work are starting to be a bit funny with my only working part time and complaining that I'm fatigued and suffering from cognitive impairment. The HR director said it was a lie that I was brain foggy - the bloody cheek of the man! Apparently I look fine (i.e. not gaunt or jaundiced) - but as I pointed out to them I didn't have cancer on my face!!! So I am going to ask the onc to to write to work to explain cancer-relate fatigue as it applies to me/my treatments. Pre-empt the sacking. I don't need that extra hassle right now. Grr! Thanks (everyone) for your support. Will keep you posted in how things go next week. Lisa x ... View more

Hi Elinda, Thanks for your message! It sounds as though you struggled with tamoxifen in the same ways as me. Fatigue, brain fog, alcohol is a no-no, hangover feeling, all-out crap feeling really! I don't think I can go on for another 4.5 years like this or worse 😞 My pain when rolling on the floor was a really severe pelvic cramp that lasted a few hours. I've since been spotting so am attributing it to a sort-of period. I do get reflux and heartburn from time to time and gaviscon helps; but the other more worrying pain feels like it is inside my right rib cage, rather than my shoulder joint, it is much worse when I have a drink and is worse when I'm lying down. feels like something is inside and causing my ribs to push out and my back to click a lot. I have had it for five months and it isn't getting any better. Add that to the intractable, debilitating fatigue and I'm treads to give up. I am frightened there is something seriously wrong, but all I get from my BCN and usual GP and the breast surgeon is "side effects", "you've been through a lot so bound to be tired, give yourself a break", and "come back when you turn yellow if you think it's your liver". I saw a different GP today and he did more bloods; he is sending me for a liver and gallbladder ultrasound as the pain in my back/shoulder isn't muscular or skeletal in his opinion so might be referred from upper abdomen. I forgot to mention the spotting (actually, I thought it had stopped) but will say something to the sonographer in case it is relevant. If all those tests come back clear he said he'll refer me to a gastro doc at the hospital. My grandfather died from bowel cancer so I've always been worried about that, even before bc, even though I would be remarkably young (33) to have it. I also used to drink way too much so worry about my liver now that I'm on tamoxifen which can take its toll. I have had enough though. Whatever it is, I just can't carry on 😞 Thanks again ladies, Lisa xx ... View more

I'm a simple one too. My name is Lisa and I was born in '79. I'm not the most imaginative bunny! ... View more