Breast Cancer Care Forum

Just wanted to send a quick message to Coralie and Schumi to wish you both all the best for your next surgeries:) I hope you both have super quick recoveries and lovely new cancer free boobs 🙂   ... View more

I am not sure that the NHS does breast lifts other than as part of reconstructive surgery after mastectomy. Though there is no reason why you can't ask:) ... View more

Hi again Coralie, One bit of advice I can give you is do not feel pressured into making a decision about the type of reconstruction. When I was given choice the Surgeon gave me the info and an appointment to go back in a week with my decision. I felt overwhelmed and it was the breast care nurse who said I could take as much time as I needed and to get a later appointment if I needed more time.    It is interesting reading about the bleeding you had, can I ask how long it went on for and if they were able to take a sample to check under the microscope? I was told the same about what might of caused it, but nothing showed up to explain it. My thought is that even if I have more DCIS it is not going to kill me and if anything invasive develops it will get spotted early as I am having yearly checks.  Hopefully it is nothing at all:) ... View more

 Hello Coralie, I am sorry to hear you now need a mastectomy, hopefully it will all go smoothly for you whatever type you decide on. Also you know there will be lots of support and advice available from Ladies on here who have had a mastectomy:) I was treated in the past and managed to avoid a mastectomy, but have to say I sometimes wish I had chosen to have it when offered as I have had ongoing issues with pain and more recently bleeding from the nipple ( which has stopped) I have had scans and everything shows as clear. I accept that the scans are okay and am trying to forget about it. What really confuses me is that I have been told by a Consultant  that no treatment is given for low and intermediate grade DCIS anymore, which I am sure is not right! (I know there is a trial, LORIS, which is looking at the possibility of omitting treatment but it will be many years before the results of the trial are available) Sometimes I think they just say things hoping it will make you feel better, when actually it is just totally unhelpful! It would be so much better if there was a clear countrywide protocol for dealing with DCIS of all grades and that we were all  given clear and concise reasons, including appropriate statistics to assist in decision making. Another area of concern is that there does not seem to be a way for surgeons to determine the extent of DCIS,  it would save a whole lot of trouble, worry and no doubt money if it was clear from the beginning how much of the breast was involved! We can only hope that improvements in scanning provides a solution in the future to save other women from needing to go through multiple surgeries and the associated  physical and psychological trauma. Well that's my little rant of the day over, apologies Coralie for hijacking your thread but I do feel it important we discuss how it feels to go through a DCIS diagnosis, it may be minor as breast cancer goes but it sure does cause a lot of trouble!           ... View more

Thanks for the reply Ann 🙂 I don't actually know about the contrast part, I suppose I will find out when the appointment letter arrives. I am hoping it is not too claustrophobic as 40 mins is quite a long time! I will be glad when it is done! Thanks again.   ... View more

Hello Good citizen73   I read your message and wonder if you have come to the right forum as you do not mention any issues related to breast problems or have I missed something?   There is a fantastic website called arthritiscare.org.uk The website includes a forum which covers all types of arthritis and related conditions like fibromyalgia. I have arthritis and have used the forum occasionally for advice.  I know from experience that some types of auto immune diseases can be very hard to diagnose and maybe you could ask your GP to refer you to a Rheumatologist for assessment.    If you are really not happy with the care you have had you can contact PALS (patient advice and liaison service) at your local hospital and they can assist you. Hope this helps.     ... View more

Hello Yvonne   I think if you Google BI-RADS (breast information - reporting and data system) you should get some more info to help. I know the UK has another classification system but there is not a lot online about it, however the two seem to be very similar.  I think the U refers to ultrasound and I assume R refers to mammogram but I am not 100% sure. The number is the classification given for each.   Maybe one of the moderators can give you the full info? Hope that helps. ... View more

Hi  It is surprising that NHS Trusts seem to have different policies. My trust certainly did test for hormone receptors and I did have some discussion with the surgeon about tamoxifen but in the end it was thankfully not pursued. I don't know how often tamoxifen is prescribed for DCIS, maybe you could use the 'ask a nurse' section of the forum.   ... View more

Hello Crystaltips   I can see why you are concerned after reading posts on the forum regarding DCIS. I expect that the stats quoted by your surgeon are pretty accurate. I came to to forum to seek advice and support of other women in a similar position as my case was unusual and I expect that many women who have a straight forward WLE fo r DCIS don't feel the need to  join the forum so the perspective is a bit skewed.   Fingers crossed for clean margins for you on Tuesday and even if you are unlucky I can from experience say that second time around is a little easier as you know the routine. Please let us know how you get on. Xx ... View more

Hello Greenbean   I am sorry you are going through all this worry. I do understand your concerns and this is how I see it...   If you have a core biopsy you only need a local anaesthetic and there will be no obvious scarring or disfigurement. Statistically most  biopsies prove to be benign.  If however cancer cells are found, the area will be surgically removed by either a wide local excision or mastectomy and you would receive either chemotherapy and radiotherapy or radiotherapy alone, both of which are aimed at mopping up any loose cancer cells systemically or within the Breast. Therefore the concern that a core biopsy might have released some cancer cells becomes irrelevant. This is purely how I see it and I am sure your Consultant will be thorough and address your concerns.   I hope your appointment goes as well as possible. Best wishes. ... View more

Dear Swede   I know exactly how you feel. I was diagnosed with the same and ended up with three surgeries to get clear margins and then radiotherapy. Tamoxifen was discussed but for me risks outweighed the benefits.   When asked I tried not to go into too much detail and just described it as very early stage cancer and if anyone wanted more details I just described it as pre invasive breast cancer.  What really matters is that you are going to have a major surgical procedure and possibly further treatment depending on pathology. You will need  support from family and friends and that support will need to be the same whatever words  are used to describe your diagnosis.   Please don't feel guilty you have not mislead anyone, it is just that at the moment you have been given the best news in that your cancer has not had the ability to spread and is most likely curable.   Do you have a date for surgery yet? ... View more

Hello Helen I am so glad you have been able to make a well informed choice. Your Consultant sounds caring and sensible, which must have helped you greatly.   I know what you feel about being emotional and feeling alone knowing your active treatment has ended, but I think we all feel the same no matter how much treatment was required. This  does improve especially once you have your first follow up mammogram 🙂   I hope you are able to get reassurance for yourself and your daughter regarding the possibility of a genetic link.  Best wishes. ... View more

Hello Helen   I am sorry you have such a difficult decision to make. I think If I were you I would want as much information as possible. Questions that come to mind are:   How good are the surgical margins?   What is the chance of recurrence of the DCIS over the next 5 and 10 years without radiotherapy and with radiotherapy? They should be able to give you percentage figures.   If you were to have a recurrence what is the chance of it being an invasive cancer as oppose to DCIS?   If you chose radiotherapy, what is more likely, recurrence of the breast cancer or development of a cancer caused by the radiotherapy? (this is very rare)   How long will follow up care be for and how closely will I be monitored?   Things in your favour are that it was not high grade and was small.     Hope this helps.   ... View more

Thanks for the reply Emma. In the UK most if not all the cancer forums are run or  supported by registered charities.   I notice that Belong is currently recruiting IT staff as part of the business. Someone is paying their salaries. If  they are a  charitable / non profit organisation no doubt that would be made clear on the website.     I am sure Belong is very happy that you are advocating their app across cancer related forums and I am sure someone will find it as useful as you have. All the best.   ... View more

Don't want to appear cynical, but Emma's post reads a bit like an advert. The Belong website seems to be US based and comes with lots of disclaimers regarding any advice given via their 'community'. They also collect users personal information to provide statistics that form part of the advice given. It does not make clear if it is a charity or not for profit organisation or if the aim is to make a profit some how ( this concerns me) Maybe Emma can explain how it works? Hope this helps. ... View more

It is not uncommon for GPs to want you to go through a full menstrual cycle to see if the lump changes or disappears. I know the waiting is hard and if you really don't feel willing to wait you could try seeing a different GP. If you do wait and then get referred if the referral is deemed urgent then you should be seen within two weeks. I saw a GP recently, the appointment was in the morning and by 1.30pm that afternoon the hospital were on the phone booking me in for an appointment with consultant.  Got seen super quick and everything was okay. Hope this helps but feel free to ask any questions.   ... View more

Dear Henry   Sorry to hear about your mother. Unfortunately you have joined a UK forum and it is unlikely anyone will be able to answer your questions with regard to the French healthcare system it is completely different to the UK's National Health Service.   Good luck in your search for help. ... View more

I am sorry to hear that you have not yet been given an appointment.  I think there is a two week deadline to be seen in the breast unit if your GP has sent an urgent referral.  It sounds like your GP classed it as non urgent which doesn't help you when you are dealing with the anxiety! I would suggest you phone the breast unit you have been referred to. If you don't have the number just phone the switchboard at the hospital and ask to be put through.   The waiting is the worst, but bear in mind that most people referred do not have cancer, the statistics are very much in your favour 🙂 ... View more