Breast Cancer Now Forum

Hi all bc left side age 28, chemo/rads. New primary right side age 36 chemo/bilateral. When I first saw the PS he told me LD on the left & expanders in both, then implants. As I said I did not want additional scars if possible I asked about expanders on both & no LD, he said we could give it a go but any problems (due to rads) we would have to review. Well, had my expanders put in Jan this year, a few probs on my left side to start but expansion went well, a little smaller on left but not much. 2 weeks before implants went in I asked what sort of size will I be, ‘depends on the style & shape of the bra’ so no real answer, all I kept on getting was, don’t get used to the size of the expansion(D cup). I am now 4 days post op & feel sick! Right side is an A cup, left side not even that big!! I wasn’t expecting to be big, but at least an A/B would have been nice, now my cup size is smaller than my 10 yr olds. I wish I had never had it done in the first place, I now feel so low I just want to hide, I can’t even cry I feel so mad. I have know worked out that to look in proportion I would have to get down to a size 6/8, so me thinks ok lets think of my options - I’ll get a gel bra to push them up, only to find the left will not push & the skin around it just creases. I just want to get blind drunk so I don’t have to deal with this, i thought after 21/2 yrs i could start rebuilding my life-how wrong i was, i just dont want to be here! Sorry for ranting. I go back & see ps on friday, havn't a clue what i'm going to say, to be honest i don't even want to go. If i was you i would ask all the 'what if' questions you can think of, make sure you know all your choices & there likely outcomes(good & bad). I do hope it all goes well & you make the right choice for you, you take care. Louise x ... View more

Hi all I had bc 29, stage 3, grade 3 trip neg, left breast, lumpectomy, chemo, rads. Dx again 36, right breast, new primary but a mirror image of other, same place, same size etc. After a big c***k up by surgical team & 4 ops later, bilateral then chemo, just looking forward to 2nd part of recon in Sept. Undergoing genetic testing, waiting for results & having ovaries removed later in year hopefully! I find when i talk to anyone of my team treating me if i am not armed with facts & questions they will not tell me anything and they most certainty will not put forward information voluntarily, which i find annoying. So for me the forum is invaluable, i read, i absorb & take note if i feel it relates to me then i ask! In Dec '06 i was dx with DCIS in right breast right side, op Jan '07 needle marker put in 4 hrs before op, when i came round from the op scar was in the middle at top (something wrong!) At appointment week later told not clear margins (surprise), again 2 weeks later had WLE, clear margins, yeah........NO! Day before due to see onc to discuss chemo find new tumour further down right side of breast. This time bilateral, only to have a massive hematoma, caused by ill fitted drain! in right side & have to go back in again. It was only when looking through my notes with bcn at my request, that i saw mammo where needle marker was put in, surprise, surprise, smack bang above a tumor not any where near the DCIS, no wonder they didn't get clear margins, they had 4 hrs in which to tell me there was a tumor there, did they......NO! I was told someone made a mistake. Well bully for them, this is not a broken arm we're dealing with, it's my life! I do not trust any of my team, i am not saying that my onc team are not good , but they are bound by the constraints of money, time & watching each others back. If it were not for the veterans, i would not understand my dx as i do, especially involving trip neg cancers. Thank you Louise xx ... View more

Hi verangie yes both trip neg, even when i had a bilateral my consultant said there is always a chance of recurrence or a new dx as they cannot remove all the breast tissue some cells or tissue will remain. This is also true as i am having my ovaries removed later in the year, but i have discussed various options including a full hysterectomy, as he has also stated having my ovaries removed which ever option i chose, does not remove the possibility of being dx with ovarian cancer as cells will always remain. Nothing is 100 percent certain, but with the treatments etc. our outlook is very positive, the problem with me is i always ask the 'what if' questions. I have been there twice don't want to go back if i can help it. take care Louise x ... View more

Hi all 1st dx left breast, Dec '99 age 29, chemo, rads - triple neg. 2nd dx dec '06 new primary right breast, mirror image of first, this time bilateral, chemo, no rads. No nodes either dx. Plunged into menopause at 34 & still going through it, as for avoiding hormones like estrogen i was told in no uncertain terms to steer well clear, natural or otherwise, i was told my bc was not hormone receptive but i am more susceptible to developing another cancer & this may well be. I had 8 clear years & i am looking for many more! take care Louise x ... View more

Hi pineapple I thought your hair had started coming back!! I was so pleased for you when you posted & if this is not the case i am so so sorry, you rant girl if you want to, i know i would. Take care. xx ... View more

Young or old, we still all go through the the emotional roller coaster, we think about the implications, we fear the uncertainty & we go on regardless. I lost my Auntie (dad's sister) to leukemia at 32, i was 19, my dad donated bone marrow to her but sadly this did not work, she left behind a husband & two boys 6 & 8. My dad was dx with wide spread cancer the year after, he died age 47, my mum was dx with wide spread cancer '05 she died age 55 yrs. I was dx age 29 & 38 yrs, the first time my children were aged 18 months & 4 yrs, since the age of 15 i have watched 6 members of my family die of the big C. For me personally, my dad never walked me down the isle on my wedding day, he's never seen his grand children, there was no one for my then 17 yr old brother to turn to, he never got to fulfill his dreams. My auntie never got to watch her children grow up & marry, have children, i have watched them grow into wonderful adults, but they still talk about their mum with sad loss & i see the hurt in their faces. My mum never got to see me go to uni at 36!, she's missing out on her grandchildren & my daughter is extremely protective of my mum's memory, coming with me to take flowers to their grave. When i was first dx my son was 4, from that point on it changed his life, as i struggled to go through treatment with two young children, he missed out on going out because i was sick & i was always tired, he remembers what i was like. This time when i was dx my children are older 10 & 12, but it has altered their lives, they have cried in my arms, got angry, watched me lose my hair & feel ill, for them this must have been very distressing. I have just been to genetics, haven't got the results yet, but have been told my daughter will be screened from her early 20's which is good, but i have i inflicted this on her, has she got to start worrying that early, it is sad. I am glad to say i have had 8 yrs between dx's which i thought i would never have, i hope i have many more yrs, but the uncertainty remains. Age i feel makes no difference to how we feel when dx with bc, we just all have different issues to face, for me my main issue is those around me & how they cope with my dx & how that changes their life. Louise xx ... View more

Hi Peacock I went for a bone scan today, my second. It took 21minutes & 16 seconds or so i was told. You are injected at the first appointment with a radioactive dye, then you go back about 2 hours later for your scan, i was told to drink plenty of water, tea, coffee....... in between as what ever doesn't stick to your bones comes back out when you go to the loo! A bit like chemo once it's gone round the system it's done it's job so you need to flush it out. You lie on a bed & are asked to keep very still while a series of pictures are taken starting at your head, the scanner is about 1-2 inches from your face to start with (i kept my eyes closed) & each image is taken for about 3 mins. After the head it moves further down to about your collarbone/ ribs, in all it took a series of about 5 images, ending up at your feet. Worst bit was it being so close to your face, but keep you eyes closed & it only lasts for 3 mins. I don't get my results until the 10th July when i See the onc, The radiologist that did my scan asked me if my appointment was 'soonish', when i said about 3 weeks she said 'the system does work sometimes then'. To be honest i wish she hadn't have said anything & then i wouldn't read anything into what was being said. I hope it goes well take care Louise xx ... View more

Hi Kate I have followed your blog & the gobby gang threads for a long time. I also hope your treatment goes well and gets you through to September, you are one very inspirational lady who deserves the extra time with your family. Echo to all of the above. Take care Louise x ... View more

I think this is an excellent idea, as long as there is a cross section of views covering different ages. When i was first dx at 29 i had a lumpectomy, chemo & rads. The scar & the tissue lost wasn't that noticeable unless i wore a bikini or very low cut top, to be honest i didn't really care & a lot of the time forgot it was there. It was only the chemo & the plunge into menopause at 33 that dampened my sex drive, but it did improve. This time around (different story), dx Dec '06, four ops later bilateral mastectomy. To be honest i hate the way i look & i mean really, 2 months before i was dx i was at a ball, long black dress, the back went down to my bum, the front down to my belly button, i was a size 10, short light brown/blonde hair, great sex life, loved going out & partying. Now i hate going out, size 14, curly dark brown-going grey hair, no sex life, can't get into any of my clothes, eye sight has got worse, so has my hearing. At the moment i am undergoing reconstruction (expander's), but due to previous rads, 8 years ago, one side is not inflating as well as the other due to the skin thinning, so i am totally lob sided. Hopefully they will sort this out soon, worst thing is it is in the breast that had no cancer this time. I was sent a email by a friend in Canada, asking all different questions, she had answered them & i had to amend them & put my answers in, you know the emails that go round & round. One question was 'who do you miss the most?' my answer was 'the person i used to be!' & i am afraid this is true. It does not matter to me that people say 'you look great' or 'your hair really suits you', all i want to do is scream, 'well it's not great, how would you like to look in the mirror & see a stranger looking back at you' & 'how would you feel having your sexuality taken away, and every time you get undressed you can't bare to look' amongst other things. So i am not the person i used to be & i hate the person i have become. The podcast is going to have to reflect a cross section of people, otherwise you may make some people who listen feel isolated if they are not experiencing those particular emotions/feelings. I have been given/ordered many booklets on mastectomy & reconstruction & they always talk about removing/reconstructing one breast & the physical/emotional implications of this, these are/where totally useless to me, they made me feel isolated & extremely angry that no consideration had been taken into account that some of us end up with no breasts at all & from my personal point of view that emotionally is very different. Louise xx ... View more

Hi lilacblushes it shouldn't differ in different authorities, government guidelines for follow up was definitely bought down to 5 years. But i would not be surprised if my health authority is one of the ones that abide by this, will ask on Thursday as i am seeing breast surgeon. Will be very interested to hear their answer! Louise xx ... View more

Hi Deb I do think in one respect it is good if younger women were screened, although i have heard it is likely that some tumours may go undetected as younger women tend to have denser breast tissue so it is harder to get a clear mammo. I was dx at 29, found he lump myself, when i had a mammo it did not show up, only showed on the ultrasound. Again dx Dec '06, mammo only showed DCIS, it didn't pick up the two other tumours that were lurking, so in my case routine screening would have been no good. What makes me really mad is that when i was first dx the routine follow up was for 10 years, every six months for two years then every year after that. But when i was 4 years post dx i was told that the government statistics showed it made no difference if the follow up was for 10 or 5 years, so they had bought the follow up down to 5. which i think is to early after dx as bc is more likely to reoccur within the first 10 years (although there is no rule). The government should have taken into account the amount of younger women with bc & the fact that many are triple neg. So under protest i was discharged at 5 years, i really feel that if my follow up had been yearly & not every 18 months they would have discovered the DCIS earlier. Lilacblushes, i'm on that trial as well. Louise x ... View more

Sadly too true Jane, My father donated bone marrow to his sister who had leukemia, sadly she died. One month later my father complained of back pain & was treated for sciatica for over a year, only to find out after an xray he had wide spread cancer, died 4 months later age 47. My mother was treated for irritable bowel syndrome for well over a year, then on going to the doctor one Saturday morning she was told she was depressed. I saw her on the Sunday & she looked irritable and bordering drunk as she couldn't walk straight, on the Monday morning really concerned as no improvement called gp out who told me to take her to A&E, so off we go me & mum's partner. Tests were carried out her calcium levels were that high from cancer they said she was lucky to be alive, it was so wide spread, my mother died 5 weeks later, age 55. I was told at 29 i was to young to get cancer! how wrong they were, i don't & never will trust gp's. I believe many are misdiagnosed & as a consequence endure much suffering. Louise xxx ... View more

Hi all I climbed Big Ben last year for breast cancer care, i finished my treatment in July & walked it in Oct. I must admit the only training i did was a 10 mile walk & i still made it to the top. You start off at different times in groups about 10 mins apart, make sure you are one of the first groups if you are not so fit as you can then drop back into a lower group if you can't keep the pace, If you are in the last group you have nowhere to drop down to! out of the 100 people who walked on the Saturday only 19 didn't make it, but they got 2 thirds of the way up. On the day we walked the weather was terrible couldn't see anything from about a third of the way up, but those who walked it on the Sunday had a fantastic day & were photographed in t-shirts at the top!!! If you invest in anything for the walk, waterproofs, good boots & walking poles are a must, i wouldn't have made it without mine they take all the strain of your knees. It is tough, but it is achievable, we started walking about 8 - 8.30 & made it back down around 5ish, just remember it is takes nearly as long to get down as it does to go up. The hotel & food was fantastic as well as all the organisers & guides, and the views are just beautiful. You will have a fantastic weekend, i wish you all the best of luck (not that you will need it), oh, one last piece of advice - take sandals or flipflops to wear to dinner the night of the walk - your feet will ache!!! Louise xx ... View more

Hi all i was dx in 1999 age 28 triple neg, stage 3, grade 3, lumpectomy, nodes, chemo, rads. 8 years later dx again, mirror image of my first dx in opposite breast, this was not a recurrence but a new primary & i truly believe that i did not have bc for the 8 years in-between. The one thing i do believe is i have been living with breast cancer since i was 28, my personality changed, i would not say it ruled my life but it was never far away. I had had a bi-lateral back in march '07(after 3 other ops to get clear margins, another story) & i am undergoing reconstruction at the moment, as well as going for genetic testing & ovarian screening with a view to having these removed a.s.a.p. (started menopause at 32 due to chemo). What i am trying to say i am not the person i was, no breasts, put on weight, curly hair etc. etc.I am & believe i alawys will be living with the effects of my bc dx & treatments/surgery. I know that i have now had bc twice & i intend to do everything in my power to reduce the chances of it coming back again, but i am under no illusion, i could get a recurrence some time in the future or i could develop a new primary. For me i would say there is no magic 5 or 10 year rule, but i will also not let it rule my life, all i can say is our dx's are as individual as we are. take care Louise xx ... View more

Hi Angie reading this sounds like me! Dx 2nd time Dec '06 surgery all through Jan - March '07(4 ops) followed by chemo (finished July '07). Referred to genetics Nov '07, Gynea Nov '07 for ovarian screening with a view to have them removed. Problems with my back, bone scan Dec '07. Reconstruction using expenders Jan '08, i go every two weeks for expansion, next one 18th, due at Gynea 25th, onc 4th April & bone scan, then genetic testing i have been told within the next two months. So i know what you mean, LEAVE ME ALONE!!!!!!! It's good to rant, i do it alot & the odd glass of wine does't go amiss either. Take care Louise xx ... View more

Fantastic Lets crack open a bottle of the best shampoo! Yipee, so so pleased for you. Louise xx ... View more

hi left side dx '99 right side dx dec '06 Derby Very cold & frosty. Roadrunner - my sister lives in mountsorrel, what a small world! Louise ... View more

Hi Hannah Hope you have seen your gp & got the appointment fast tracked! Same as Margaret said, she should have at least had the courtesy to ring you back. If you are seeing a consultant next week why don't you mention it to them, i know it is for something completely different but they may be able to ring & get you an instant referral! just a thought. you take care Louise xx ... View more

Hi Malan I finished my chemo in July, had a referral to ps in Nov & just had expander's fitted a week ago. I was told by my bcn, if it is what you want, the sooner you discuss your options with the plastic surgeon the better, then you have time to decide on the best option for you. I think the only restriction is if your having radio, but every hospital & onc seems to have different opinions. Louise xx ... View more

Hi hannah i wasfirst dx at 29, 2 young children, my gp said i was to young to have breast cancer although i had a clear lump! i pushed for a refferal & it was 8mm tumour. I have a family history of cancers so i was aware of thr risks, for me personnally i do not believe gp's don't know enough about the symptoms that present themselves as cancer to be qualified to diagnose, as there are many symptoms and every one is individual. There are many types of breast cancer that are undetectable to touch or the human eye, i believe we all know our bodies & we should go with our instincts, my last dx last year was picked upon a mammo, dcis, 4 ops later & 2 tumours, i had a bilateral masectmy (someone made a mistake, but thats a long story) i hope you get a quick refferal to put your mind at rest & let me know how you get on. Louise xx ... View more