Breast Cancer Now Forum

Hi Dana   Can I ask you how old you are. I am also 8/8 oestrogen positive and I asked my oncologist about zolodex injections to stop my ovaries and he said it wasn't necessary. Which is a shame as I have endometriosis and it would have helped to stop the monthly pain I get with that. However his reluctance may be due to my age as I am 50 and may be perimenopausal already.   Sharon ... View more

Hi Dana   I know what you mean about a wobble. I went for my radiotherapy planning session on Tuesday and received the appointments today. I start on 11 Dec and am having radiotherapy to both breasts as I had invasive cancer in the left and dcis in the right. I was hoping to get the 15 treatments and 3 boosts out of the way before christmas but it is not to be as my last appointment is sheduled for 8 Jan. Like you I am apprehensive about it all particularly as I was diagnosed in April but had to have 4 operations and an MRI before getting to this point.   I have also picked up my tamoxifen prescription which I haven't had the courage to take yet but plan to on Monday. Is anyone else taking tamoxifen at the same time as having radiotherapy? I will also be starting to take a statin within the next week or so due to very high cholesterol. Feel like I have gone from a reasonable fit and active and well person to an old lady on lots of long term medication overnight.   Lets hope that we have very few if any side effects from treatment although I am currently off work and not planning to go back until after radiotherapy has finished.   Sharon ... View more

Hi   I too am hoping to have the oncotype test. I was diagnosed with bilateral breast cancer in April , Invasive grade 1 mixed lobular and ductal cancer 3.3cm in the left breast and DCIS intermediate grade 4cm in the right breast. Have had 4 WLE to clear the DCIS and was told yesterday that all surgery is now complete and that I am to be referred on to the oncologist.   According to the surgeon I have a 4 -5% survival benefit with chemo (adjuvent online). However I am interested in the distant recurrance rate and that is why I want to have the oncotype. I have tried to research the benefit of chemo in my case and from what I have found it is not clear. Some criteria regard the size of tumour as most important therefore a 3.3cm tumour puts me at higher risk of recurrence despite the grade but others suggest that chemo is not that benefical in grade one or lobular tumours!   I have to wait a further 2/3 weeks before seeing the oncologist. However I have been told that I will need to also have bilateral radiotherapy and ten years of tamoxifen as I am 8/8 oestrogen positive. The whole thing is so confusing and the worst bit is making the decision about chemotherapy. I was hoping that following the new guidelines that the oncotype test would now be available free of charge for all those patients that are borderline.   Sharon       ... View more

Hi   I live in Amersham and having treatment at High Wycombe! I too have had 4 operations all Wide local excisions. I was originally diagnosed in April with Invasive cancer in the left breast and DCIS in the right. The invasive cancer they got out all in one go 3.3cm however the DCIS is proving more elusive before the last op they had removed a total of 4cm worth in the previous 3 ops and I was told a mastectomy would be recommended however the consultant said that due to the position of it he thought he could remove all remaining tissue with a good cosmetic result (I am not big breasted either) and so I have gone with that option. Had the operation last wednesday and will be going back next Friday to get results.   I am hoping that will be the end of surgery and that I can move on and see the oncologist to see if I need Chemo as well as bilateral radiotherapy. It has taken six months to get to this point and I have to say that I am a bit fed up with it all now.   There is a BC support group at the Chiltern called Upfront and there is a meeting tonight and I am considering whether to go or not.   Sharon ... View more

Hi   I went to see my Consultant yesterday having spent the past two weeks stressed and in tears because the surgeon who had carried out the third WLE had told me the MDT meeting had recommended mastectomy to find that my actual consultant feels that I should let him have  a fourth attempt at clearing the DCIS!!!!!!  Basically he said that he was not present at the MDT to argue an alternative opinion and that he is ultraconservative and feels its best to preserve the breasts if you can and that as it is the medial margin (towards the middle of my chest) that they can't get that he can take all the tissue down to skin and then I would have bilateral radiotherapy.  It would have to be bilateral radiotherapy as I had an invasive cancer removed from the other breast as well which they did get clear margins on.   I pointed out that I had spent two weeks trying to get my head round a bilateral mastectomy by focussing on the good points. Which are no radiotherapy, and youget to find out if there are any other areas of cancer or DCIS which have not shown on the imaging. And now he wants me to revert back to plan A.   To say that my emotions are all over the place is an understatement. If I agree to a 4th WLE I don't know what kind of deficit I will be left with and I will then have to have radiotherapy which may also alter the shape of my boob.  The other option is quite radical surgery arrrgh. If only these decisions were straightforward.   Sharon     ... View more

Hi Helen15   Thanks for your comments. I am going back to see the consultant tomorrow and still don't know which reconstruction to have. The diep flap 8 hr operation and 8-12 weeks recovery or the implants with strattice mesh. 4hr operation and 4-8 week recovery. Most of the people I have discussed this with think the diep flap is the best option as they use my own tissue and you get a free tummy tuck thown in. However as a nurse I am aware of everything that can go wrong and the extent of the complications and my friend who used to be a sister on a urology ward where they did reconstructive surgery did sound a note of caution with regards to the longer procedure.   Help what am I supposed to decide. I don't want to make a decision about any of these options!!!!!    Sharon               ... View more

Hi Lynvee   I am feeling slightly better about it all now. Well I can at least talk about it without crying!!! I have to go back to see the consultant on Monday with a decision ( which seems to change daily). At the moment I am thinking a diep flap reconstruction then I panic about the operating time and recovery time and think implants would be better. How on earth are we supposed to decide on which option is best when we don't know what it will means in practical terms!!!   I used to be a nurse and I think we definitely make the worst patients as we know far too much. However was out tonight with some friends who are still nursing and they gave me their advice which was helpful particularly as one used to be a theatre nurse at a private hospital and knew the plastic surgeon who would be doing my diep flap on the NHS.   I hope the consultant has plenty of time on Monday as I have lots of questions to ask. I am hoping they will be able to give me a timeframe for the operation but I am guessing it will be the end of sept at the earliest.   I hope things are going well with you   Sharon ... View more

Hi Doubletrouble   I too have been diagnosed with bilateral breast cancer. Invasive ductal and lobular in the left breast and DCIS in the right. I have been advised to have a bilateral mastectomy after 3 attempts to get clear margins. I too had a sentinel node biopsy on the left breast in May which was clear but will now need one on the right side which I understand gets carried out on the day they perform the mastectomy.   I have been offered immediate reconstruction and I am trying to make a decision on the options I have been presented with. I think I am going towards a DIEP flap reconstruction as even though it is a bigger operation and longer recovery time initially it shouldn't need revision surgery etc at a later date.   I am going back to the hospital next week to tell them my decisions and discuss it further with the consultant not sure how long I will have to wait for the operation though!!!!   Good luck with your surgery please let me know how you get on.   Sharon ... View more

Hi   I too have invasive ductal and lobular cancer in the left breast 33mm which was removed in May. Unfortunately they found DCIS in the right breast during the mammogram and to cut a long story short i found out last Thursday that despite 3 WLE's they had not got clear margins and were recommending mastectomy with immediate reconstruction. Due to the invasive cancer on the left they think I should have bilateral mastectomy. I am going back next week to tell them which reconstruction I would like i.e DIEP or implants as I have ruled out the LD flap as I play tennis!!   It has  been a huge shock as I was sure that it would be third time lucky how wrong can you be!!!!   It is good to hear of others that have faced the same challenges and who now feel better that the surgery is over. I used to be a nurse and so I am finding it hard to put my trust in the medical team at the moment particularly as they have assured me on many occasions that the next WLE would be it and I could consider myself cured!!!   Sharon ... View more

HI Buzzy   I hope your DIEP goes well. I am considering this reconstruction option after being told I need a right sided mastectomy following 3 unsuccessful WLE's. I also have invasive cancer on the left which was removed during a WLE but because it was 3.3cm and all of it didn't show up on the mammogram they are suggesting a bilateral mastectomy. I do have a big tummy but not sure if I have enough for two new breasts.   Please let me know how you get on. I go back to see the consultant with my decision on the day you have surgery so I will be thinking of you.   Sharon   ... View more

Sorry forgot to thank jojo too. Thanks for all your support   Sharon ... View more

Hi Revcat and Rollercoaster   Thanks for your replies and the virtual hugs. I am normally a strong person but I woke up again this morning in tears! I seem to have had a permanent headache since they told me last Thursday. I have had a week to digest the news and still can't seem to get a grip of myself.  I am sure it has been harder to deal with as every time I saw the consultant he seemed to think the DCIS on the right was no problem and even said prior to the second WLE that once that was over I could consider myself  'cured ' on the right side. I think I will be reminding him of that next Thursday when I go to see him to discuss my decision.   My worry has also been that during the four months since the invasive cancer was removed from the left side I have had no further treatment to that side such as radiotherapy and haven't been started on tamoxifen etc. I was told I had to wait until all the surgery was completed before moving onto the next stage.   I have tried to be strong during this rollercoaster of a ride, and I know that there are lots of women in much worse positions than I am right now but this has really floored me and I didn't think it would.   I am going to ring the breast care nurse at the hospital today(if I can get some privacy as I have four children at home aged 21, 18,16 and 12) to see if I can go in and talk to her, she wasn't there last week nor the consultant as they were all away on holiday. I think i'm also finding it hard as don't want the kids to see me in floods of tears all the time!!!!   Thanks for your understanding.   Sharon     ... View more

Hi Diamond Lady and Bowl of Cherries I am due to have a third WLE next wednesday for DCIS. At the first operation they removed 17mm and at the second they removed an additional 13mm making 30mm in total. I went back for the results last week to find that they still hadn't got clear enough margins and I need a further operation. The surgeon did say that this would be the last WLE and that if they couldn't clear it this time I would have to have a mastectomy. I wasn't given the option of choosing a mastectomy and did not really think about this whilst in the appointment. But since then have been thinking that I should have discussed the pros and cons of going for the mastectomy straight away instead of another WLE. I also have had a WLE for ia 33mm invasive cancer in the the other breast which was removed in one operation so would ask for a bilateral mx and reconstruction should they advise a mastectomy for the one with DCIS. I must admit I am worried about the amount of tissue they have or will remove and the effect this will have and am beginning to think that a mastectomy would be the best plan but I do think that the surgeons these days feel that this is a negative thing and somewhat of a failure on their part. Lets hope that for all of us facing re excisions that they are succesful this time!!! ... View more

Well just got back from clinic and the surgeon has said that I need to have another operation to get clear margins and that if they fail this time it will have to be a mastectomy. Beginning to think that might be a better option!!! I know that if it comes to that I will ask them to do a bilateral mastectomy and reconstruction so that I don't have to worry about recurrance on the left. I am finding it hard to come to terms with though as I initially went to the breast clinc because of a lump and skin tethering to the left breast which turned out to be a 33mm mixed invasive ductal and lobular tumour which was removed in one operation. The DCIS in the right breast was found as a consequence of the mammogram I had and when they found it at first told me it was only 5mm of calcification on mammogram. The two operations have removed a total of 30mm of DCIS which wasn't visible on either the mammogram or the MRI scan I had following the first operation. It does make you wonder what else is lurking there that isn't being shown up!!! One good thing is that they are doing the operation next week so not long to wait!!! ... View more

Thanks for your replies. You are right all this waiting around for a treatment plan to start is making me very tense. I have four children and normally like things to be planned and to know where I am and what I am doing all the time. It is also hard not being in charge of the decisions and having to put your trust in others. I haven't called the helpline yet but may do so tomorrow. i just hope that I remember all I want to say and the questions I want answered whilst I am in seeing the surgeon as the last few times I have only remembered what I wanted to say after I have got home . I don't know about the length of waiting list for the oncologist they haven't discussed this yet but I might suggest that they refer me to him as I plan to ask for the oncotype dx test to be carried out. Also I can't see any reason why if I don't have chemo that they can't carry out the radiotherapy concurrently to both boobs rather than at the same time. X Sharon ... View more