Breast Cancer Now Forum

Recommend book called mummy's lump to read with children - electronic version available from this site. christine ps just sending short messages as longer post which took ages to write was lost with a blib on this site ... View more

Three years since ibc diagnosis - chemo mastectomy and radio and still here 🙂 ... View more

And Macmillan has some useful information on this too : http://m.macmillan.org.uk/article/name/cancerinformation-cancertypes-breast-treatingbreastcancer-hormonaltherapies-ovarianablation and on hysterectomy http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Surgery/Hysterectomy.aspx hope this helps ... View more

Just checked it - this is the breast cancer care booklet on ooopherectomy http://www2.breastcancercare.org.uk/publications/treatment-side-effects/ovarian-ablation-suppression-bcc27 ... View more

I had my ovaries removed with my second mastectomy. This was done in the same operation - the ovaries removal (oopherectomy ) was by keyhole, and I think it took about 45 minutes to do - by the gynaecologist. I had no pain from that part Of the surgery. I think there is a oopherectomy leaflet available from breast cancer care - which may be worth looking at. In my case I had my ovaries removed as both my primary bc's were er+. I am now taking daily vit d supplements prescribed by the oncologist as having no ovaries can harm your bones, and I have a scan to check my bones every two years (to check I am not suffering from osteoperosis) . So far all fine. Best wishes ... View more

Hi to all, I have had two mastectomies, both with immediate reconstruction using an implant (and strattice mesh). Very happy with the results. With cloths on it looks very normal. That makes me happy. I don't think about it much either now. No nipples sadly, but perhaps one day I will have them tattooed on. The implants do feel quite hard, and on occasion when I hugged someone I almost bounced off them. Well, perhaps that was just me being sensitive to that. I also have run into doorframes on occasion. And bounced off. Maybe I am just getting clumsy :-). I have not much or no sensation in a large area at the front, and under arm where lymph nodes removed. That's just odd sometimes. And missing my nipples. But overall I am happy having gone for the reconstruction and having a normal appearance in clothes. hope this helps? christine ... View more

Hi Sinfullyd, Just a few more days - perhaps you could try to do some things now that distract you, and that you enjoy. My BC did hurt at the start - and i found that the stress of the investigations and then the diagnosis made it very much worse. Once my treatment started for me the pain got less very quickly. wishing you the very best. Chrisine ... View more

Hi trish, ibc here too, but no family history at all. I did have a second primary within a year of finishing ibc treatment (chemo, surgery and radio). Not triple negative. I haven't heard anything about the third brca gene, I hope they discover more soon, and treatment to go with it. 🙂 wishing you the very best the surgery next month. Congratulations on having finished your six months of chemo. christine ... View more

I just wondered whether it would be a good thing to talk to his teacher or nursery staff too. just to let them know what is happening in your family, and perhaps they may have some advice, and they may look out for him if he has any upsets at school or nursery. Perhaps they cover some bereavement issues in the books that they read witH children - not sure at what age they start with this at primary school... Any teachers here who can comment? big hug to you, tough times. christine ... View more

Hi jazzles, Poor you, not knowing what is happening is really hard. Glad to hear your GP is cool and referred you immediately. you should get an appointment within two weeks of referral (though if the hospital is too busy there may be a delay). When I was referred I was in a lot of pain, and phoned up 4 days after being referred and just asked ife there was any cancellation, as I was in so much pain (I had ibc and my breast was two cup sizes larger than normal). I was lucky and they managed to squeeze me in that same day. Worth trying. You are very right to take a friend with you - to keep you company and moral support as well as an extra listening ear. in my hospital the wait in the breast clinic waiting room often was very long, so a friend to talk to wold be very good in case you find the same waits once there. i hope there is an innocent explanation of your symptoms. Whatever it may be, there are lots of lovely ladies here to support you. fingers crossed the breast clinic gets you an appointment very soon warm wishes Christine ... View more

i used aloe Vera (98%?) to sooth radiotherapy skin burns, and it was bliss. A word of warning though - please use it on a small area first to check it is ok for you. Some people are allergic to it, which I only found out after giving it to a relative who applied it to sunburnt skin and then found she got a terrible painful rash a few hours later... I felt so bad. Christine ... View more

Peacock - that is great news. I am just over 2 years past IBC dx, and also had a later diagnosis of a second primary on the other side with further treatment, and currently NED too. 🙂 Christine ... View more

Dear ruby, oh, it sounds like you have such a rotten time, and you are in so much pain... I really feel for you. I hope things can be sorted out for you very soon. Jo has already suggested you phone the helpline - and I would strongly recommend you do so tomorrow. They are very knowledgeable people and will help put your mind at rest. The pre-op team adviced you to go to your GP, which I think sounds like very good advice. You should not have to suffer so much pain, and hopefully your gp can help you with that. Also, as you are having worries about pains in your breast, and possible changes in our nippple, you should definitely discuss this with your gp. You are the expert on what is normal for you about your breasts, and if there are changes and pain this should be seen into. As you are in so much pain, please do ask for an urgent visit to the GP. Do phone first thing tomorrow, I would ask for one on the same day if available. Your gp should be able to help you reduce the pain. Don't suffer in silence. as for your question on whether this could be ibc? I don't know. Very unlikely i would think. I had ibc, and a very much swollen breast, and lots of referred pain in my arm (I thought my arm was very ill, but it turned out to be all referred pain from my breast - this referred pain thing is weird). Different from your experience though. your pains may well be related to the other things going on for you - and the stresses that go with all this. Do mention your worry to your GP tomorrow, or as soon as you see her or him. And please don't google too much on the ibc subject, lots of info is too much outdated and not a nice read. Sending my warmest wishes, hope things go better for you soon, christine ... View more

Bump ... View more

Dear ib and mum, My advice would be for your mother to go to the gp, and ask to be seen again by the breast clinic. Just to be sure. There are lots of non-BC reasons for red patches and itchy breasts, but any change from what's normal for your mum is worth investigating. Are these IBC symptoms you are asking, I don't know. Sorry. I had ibc, but it was much different from what you describe (mine was more like having orange peel skin, and a breast that grew two cup sizes over a fortnight, and a hot area red skin around the nipple, and a mastitis like swollen breast, and referred pain throughout my arm). Other ibc ladies may have had different presentations at the start. From what you write however, i would not be too worried. Please urge her to see her GP though, and get it checked out. Just in case. And get a referral to be sure. Fingers crossed, hoping your mum can find out soon what is causing this, and help in sorting it out. warm wishes, christine ... View more

hi, just wondering about a reply... It sounds like you are worried about the pill and perhaps a raised chance of breast cancer? I would suggest you discuss this with your gp. There are different types of pill, and there may well be one suitable, without additional risk. Is there a history in your family? You write that you are TN, so your cancer is not oestrogen related. This may impact the choice of pill? Sorry, I have not got an answer, just questions. Anyone else care to comment.... Bump christine ... View more

Hi Gillian, as Sdfmeg says - it is not confined - you will be lying on a table and this table will move to position the parts of your body that need to be scanned through this large doughnut shaped ring. You will hear some whirring from things in that doughnut, but it is not very noisy. I found this bit shows a good picture and it explains a bit what goes on. http://www.bupa.co.uk/individuals/health-information/directory/c/ctscan You may be able to keep your clothes on, or otherwise they give you a gown to wear (and you still have your underwear on) - In that case there will be a changing room. Sometimes they ask you to put your arms up like in the picture, depending on what they want to scan. You have to lie very still. There will be people monitoring you from behind a window. The machine may tell you to breath in and lay still, and it tells you when to breathe out again and relax. This may happen a few times, while they take the pictures. I just closed my eyes and thought of nice things, and followed the breathing instructions as if I was in a yoga class Just a tip - you are usually allowed to keep your shoes on, but I liked to take mine off, as I found it more comfortable to lie on the bench with my shoes off (otherwise my feet kept falling to the side). Perhaps this is just me - but it did help me feel a bit more in control. They may also inject you with a dye to help making the pictures. As sdfmeg said, this may give you a feeling of 'warmth', or rather it makes you feel like you have wee'ed yourself. I thought they where joking when they told me this. But then when it came to that very moment, it was quite an odd sensation, and I really thought I was the first one who had actually wet themselves big time.... So embarrassing.... But phew, when I got up, I was not wet at all so if this happens to you, not too worry, just smile. Another useful thing to know is that after the scan you may a bit wobbly. So don't get up too quickly from that bed. I have had a few scans so far, and find they usually let you sit somewhere for about ten minutes while they wait for you to calm down, with a button to press if you need help. In my case the dye was through an IV thing in my arm, so that is also why I had to wait, as they had to take that out. Well, I hope this helps a bit, good luck - and once you have had yours just add it to the list of little victories - well done wishing you the very best christine ... View more

Hi Gillian, as Sdfmeg says - it is not confined - you will be lying on a table and this table will move to position the parts of your body that need to be scanned through this large doughnut shaped ring. You will hear some whirring from things in that doughnut, but it is not very noisy. I found this bit shows a good picture and it explains a bit what goes on. http://www.bupa.co.uk/individuals/health-information/directory/c/ctscan You may be able to keep your clothes on, or otherwise they give you a gown to wear (and you still have your underwear on) - In that case there will be a changing room. Sometimes they ask you to put your arms up like in the picture, depending on what they want to scan. You have to lie very still. There will be people monitoring you from behind a window. The machine may tell you to breath in and lay still, and it tells you when to breathe out again and relax. This may happen a few times, while they take the pictures. I just closed my eyes and thought of nice things, and followed the breathing instructions as if I was in a yoga class 🙂 Just a tip - you are usually allowed to keep your shoes on, but I liked to take mine off, as I found it more comfortable to lie on the bench with my shoes off (otherwise my feet kept falling to the side). Perhaps this is just me - but it did help me feel a bit more in control. They may also inject you with a dye to help making the pictures. As sdfmeg said, this may give you a feeling of 'warmth', or rather it makes you feel like you have wee'ed yourself. I thought they where joking when they told me this. But then when it came to that very moment, it was quite an odd sensation, and I really thought I was the first one who had actually wet themselves big time.... So embarrassing.... But phew, when I got up, I was not wet at all 🙂 so if this happens to you, not too worry, just smile. Another useful thing to know is that after the scan you may a bit wobbly. So don't get up too quickly from that bed. I have had a few scans so far, and find they usually let you sit somewhere for about ten minutes while they wait for you to calm down, with a button to press if you need help. In my case the dye was through an IV thing in my arm, so that is also why I had to wait, as they had to take that out. Well, I hope this helps a bit, good luck - and once you have had yours just add it to the list of little victories - well done wishing you the very best christine ... View more

Hi rattles, what is happening. - another posting lost... 😞 I replied yesterday. - and saw two others had replied to your message too... I hope they can see your new thread and send their views again. (I remember both saying the oopherectomy is much easier than mastectomies :-). you have been through so much, and I am sorry to hear more surgery is ahead. I had an oopherectomy too, but mine was done at the same time as my second mastectomy. That part of surgery was keyhole, and the good news was that the removal of my ovaries did not cause me any pain afterwards, and the scars are tiny. it took about 45 minutes I was told. So not such a massive thing as the mastectomies surgery you have had already. I hope you surgery goes smooth, and that compared to what you have already gone through this will be easy. since my oopherectomy I am taking vitamin d3 tablets, prescribed by the oncologist, and have a dexa bone density scan every two years, as having no oestrogen will make me more prone to osteoporosis. Will you be needing this too? I am also on letrozole, so perhaps that makes my need for this vit d stronger. i hope the surgery goes well for you. Wishing you the very best christine ... View more

Perhaps mention it to your gp, and ask if a physio could have a look at it. That worked for me 🙂 christine xxx ... View more