Have just found this site despite looking at various websites for the last two weeks as newly diagnosed with oestrogen receptive breast cancer )DCIS .  I am having a lumpectomy next Tuesday (28th) but the day before they are inserting the wire to inject dye so the surgeon can see the tumour when he operates.  I believe they will do the sentinel node removal at the same time as the lumpectomy. But if the cancer has spread I will have to go back and have the Sentinel node removal after I see the oncologist pending on the results of the nodes they remove next Tuesday.  Sorry, I am not as clear describing it all as it is still relatively new to me.  I was not aware that the injection is radioactive.  This was not conveyed to me when I saw the doctor after the confirmation of the diagnosis.  What you have written has helped me a lot as I am preparing mself that I more than likely will have to have the second procedure done - knowing my luck.  How did you feel after the lumpectomy.  x ps. I am Stage 1A, Grade 2.

Hi Bernieb. I am sorry to hear that you have been diagnosed with early stage cancer. The good news is that at this point your cancer is diagnosed as DCIS which means it is contained within the breast ducts and does not appear to have spread further. I had exactly the same diagnosis as you at the end of May. When I had my lumpectomy I did not have the Sentinal nodes removed at that point because they felt it was unlikely that the cancer had spread any further but after the lump was removed and they did further analysis they found a small strip of invasive cancer cells that had broken through the duct and were sat outside the duct . I imagine it as a straw (the duct) with a pea sat inside it -this would be DCIS. The difference for me is that mIne now looks like a straw with a small hole in it where the pea has pushed through. When I was diagnosed with DCIS I did not register that this diagnosis might change after they had done the post operative analysis so it came as a bit of a shock, so be aware of that. If you do have DCIS then celebrate because you have the best type of breast cancer- if there is such a thing! Survival rates are great . The other thing to be aware of is that when they take the lump they take a margin around it, they will look at that too to see they have got all the lump. They refer to this as clear margins, if the margins are not clear they are likely to go back in again and take out a big more to ensure that they have all of the tumour. So back to your questions. What you are describing is dye to identify where ther Sentinal nodes are, so it sounds as you are having the nodes removed at the same time as your lumpectomy. I believe from what I have read that it is more common to have both done at the same time. I didn't have this procedure at the time of my lumpectomy I had it several weeks later when I had my separate sentinel node op. For me the blue dye was injected when I was in surgery , what I am referring to is another seperate procedure also used to identify the node which is an additional injection of radioactive ion. . So 2 different procedures but for the same purpose to identify the nodes. It seems that some hospitals use both methods in combination others just use one. . So I didn't have the wire procedure when I was conscious but the lady in the next bed to me did have and she didn't seem to have anything awful to say about it.. You describe having to go back and have a second node clearance, if they find that any cancer cells have spread to the nodes it is possible that you will have to go back and have what they refer to as an axciliary clearance this is when they take all or most of the nodes. This does depend though on how many of the original nodes they remove contain cancer cells. This is the point I am at now. I am waiting for the results of the analysis of my Sentinal nodes. I get the results on aug 11th. Then the course of treatment will be decided depending on whether it has spread or not. My invasive cells are classed as grade 2 (out a 1-3 staging where 3 is the most active) and my DCIS bit is classed as intermediate ( DCIS is described slightly differently either low , intermediate or high, which refers to the likeihood of them becoming invasive).. As this post Is long I will do another one about how I felt post lumpectomy. Whereabouts is your lump? 

That's good to hear after those weeks that you are not thinking about your boob and armpit!  Thank you so much for your good wishes.  Yes I know what you mean. It seems almost too good to be true, but thank God we are very fortunate.  Surgery next Wednesday morning early which is great. Just get it over and done with..  Then start thinking about next stage.  When is your treatment going to start?xxx

Hi Bernienb, just to say I am thinking of you and sending you my best wishes for Wednesday. When you are up to it let me know how you are. I have bone scan on Thursday - another radioactive ion injection in my arm this time not my boob so has to be better! Then a 3 hour wait until the radioactivity has spread around my body before they do the X-rays. Don't know how long the results will be. My surgeon has just sent her letter to the oncology team so expecting an appointment fairly soon? Maybe after bone results?  I don't know about you but I asked to be copied into all the letters sent any where about me I.e surgeon to my GP etc, I find it useful to read what they say. Anyway all the best for Wednesday, take care xx

Hi Kalisunshine. Thanks so much for your good wishes.  I am sure all will be fine after tomorrow - just want to get it over and done with now.  Bit fed up with getting my boobs out to the world and his wife!  Never thought I would be doing that when I was 45 and sober!  I will let you know how it goes and what they say.  That is a really good idea re: cc'ing on the letters. I will definitely request this as otherwise you sometimes feel out of the loop.  Best of luck with the bone scan on Thursday.  Please let me know how you get on and I am really sure all will be well, but it is very good to get this done so you no longer have to worry.  I keep thinking what if another lump comes in the other boob - is this a possibility. They said no way.  Not now.  But that worry comes into my head- usually in the middle of the night!  Thanks again for your kind words.  I will keep you updated, and thank you..xxx

How are you and how was your scan? I really hope all went well last week.  Op last Wedensday was okay - longer recovery over the following days. Energy was zapped and I felt so tired.  This week much better.  Going back on the 4th September to see oncologist for treatment plan.  They originally said radio would start 4-6 weeks after op last week.  Surgeon said she was sure all of it was out now and there are four titanium markers in place for the radiotherapy.  Scar is slightly different and fluid build up is slowly dispersing which is good.  I am glad the operations are over now.  I feel positive but have moments of weakness and dread that the thought of going through operations again if it came back - I think this would be even worse than being diagnosed first time round. Do you know what I mean?  Hope you are okay though and please let me know that all is well with you.  Prayers to you and everyone on this forum.

Hi, welcome back! So glad to hear all went well. Really glad to hear they have got if all now. I was off work for 4 weeks after my lumpectomy and then another 4 weeks after my Sentinal node surgery so don't be too hard on yourself! I had thought I would be back to work after a week off ha ha! Seems crazy that I even thought it now? Just take it easy, do you have a partner to help out with the children? I do know what you mean about the fear of it coming back but I just try to focus on the now otherwise you can just torment yourself . Bone scan was fine nothing to worry about if a little claustrophobic for a minutes at the start! now waiting again for results and also for a gene recurrence test which takes 10-15 days to come through. We have ended up paying for this ourselves as they don't do it in my hospital trust. It will enable me to make the most informed decision about chemotherapy or not. Not that I want it of course ! Should see oncologist around the 10th to decide treatment plan. There is a 4-5 week wait here for radiotherapy if that is the route we go down. Did I tell you how helpful cold cabbage leaves were to me to ease discomfort! Take care stay positive - we are survivors! 

I just wrote a long reply giving a update and its just deleted!  Not my day at all.  Went back to see surgeon today - going in for another op next week - margins showing cells which too close, so need to take more out.  Told her to go mad and take out 20mm and not just 10mm.  She has to follow strict guidelines so guess not an option.  Sorry, I wrote so much and now I have to retype! Feeling a bit peed off as there know there are a few dots and the ultrasound or mammogram will not pick it up so cannot use that as a guide.  Anyway, have to be pragmatic and get on with it I guess, but having a bit of a wobble about it all.  They are hoping to get all this third time - dont want to have a fourth time so said you can take the boob off, don't want the uncertainty.  How are you doing??  I really hope all goes well with treatment plan next week.  Asked today about the Oncotype DX test - I do not qualifiy as tumour was small and not a higher grade.  Very expensive to get carried out by NHS. Something they may do in the future with cancer patients but at moment, not happening.  I am signing off now, need to go to bed.  Will let you know how Tuesday goes next week.  Body can cope with the ops, treatments etc, but the mind is not as strong - especially after today.  But I know I am fortunate and its going to be okay, but the doubt that things will not be straightforward and it will be just my luck for it to be complicated! x

Don't know if allowed to swear on this forum but that's what I feel like doing-a lot ! What **** news! can't believe they have to go in again **** no wonder you feel miserable don't blame you at all. It is really devastating. It is so hard to keep picking yourself up and being positive isn't it. Third time lucky! Lets hope they get all the lurking ******* cells. Was it a serious "take the boob" conversation and are they going to? I will have everything crossed for you, I so hope this is the last op. How is the after pain at present ? Keep remembering that your nodes are clear so this is all about removing the mass that is contained in the breast and it is such good news that the type of cancer is not invasive and not a higher grade. So once it is gone you will be cancer free. That is the hard bit to get your head around, my tumour was taken out on June 4th and ever since it has been more surgery and more tests so i forget that once the tumour was gone I was actually cancer free (if bone scan is clear!) I won't say stay strong, stay positive you must be sick of hearing people say that! I will say we WILL BEAT THE ***,(probably get banned from the forum for bad language now!) take care xxxx

Hi - yes, I feel like swearing too!!! Am okay today. Had surgery yesterday and feel much better today.  I wonder is recovery dependent on whether you have am or pm surgery?  First and Third time - pm and I felt much better day after.  Second time - am - felt rubbish for 3 days.  Or is it to do with amount of anaesthetic? Anyway, over yesterday and just a bit tired today so no problem.  I go back on 25th Sept for results.  If DCIS still there, I am requesting mastectomy - I have had enough now.  What if I go back fourth, fifth time and margins still too close and then all thats left is mastectomy.  Might as well cut my losses now and get the bloody thing off.  Maybe it's God's way of giving me the certainty that take it away and there wont be any spots left.  How can I ever be sure they got it all out if it is dotted about and not one big clump as it usually is with DCIS?  I also asked about Oncotype DX - I do not qualify - it needs to be a higher grade and bigger and very rare for hospitals to adminster this test.  She said one day they may well do but at present, no.  How are you doing with everything? When are you getting results?  Were they quite willing to give you a bone scan?  I asked how often I would be monitored. She said next June you will have mamogram and ultrasound.  But I can go to the drop in clinic anytime I would like too.  But should I ask for blood tests or further checks?  I guess I don't as it is has not gone to lymph nodes.  Surgeon also said that in Holland, they are leaving lymph nodes in and just removing the mass.  No one else in Europe will do this and she said Holland are doing lots of tests and this may happen eventually.  Hope you are feeling good.  I am really find now and if I expect bad news on 25th and margins too close, I know I have made my decision about how I move forward and I'm not interested in reconstruction - I just want them to take breast off and then I can think about it next year or maybe never! xxx

Hi, really good to hear from you so soon after the op. Glad that you are feeling better this time than last. I have everything crossed for 25th for you. I understand about needing to think about the worst case scenario I have done that all the way along as I just needed to think about what I would do in each situation. I hope this time the results are good

Today was my results day and it is a GOOD day! My bone scan is clear and my Oncotype score is 6. Low risk is 1-18, so I only have a 5% risk of my invasive cancer moving to my brain, bones or liver in the next 10 years. Therefore chemotherapy is not recommended. I am ecstatic!  I have a prescription for Tamoxifen and have to wait for radiotherapy appointment next. I will do 3 weeks 5 days mon-fri. The test does not give guidance on the any likelihood of breast cancer returning but just not going to worry about that for now. We have a holiday to scotland booked for 20th and it has been hanging in the balance for weeks but now we know we can go! I can wait to start Tamoxifen till I get back from the holiday- I have read quite a big about side effects. Tonight I have an overwhelming sense of relief. 

P.s I asked for the bone scan because I was worried about a persistent pain in my shoulder that I had had for a couple of months and I think that was what swayed my surgeon into agreeing the bone scan. I did ask about blood tests to monitor me moving on but my surgeon didn't seem to think they would offer helpful info. I think the Oncotest will become more widely available with time, some counties are paying for it now. My surgeon said I could be referred to another trust to see if they would pay for it but it could have been anywhere and I wanted to continue my treatment in my own home county. The test has a set of criteria for eligibility I just happened to tick them all node clear, invasive cancer, stage 2 ER positive HER2 negative. I think the decision about leaving the nodes in or not depends on where you are. They originally thought my lump was just DCIS and that was why they left nodes-that's what they do here. They only operated and took the nodes when it turned out I had some invasive cancer as well .  Need to sleep now exhausted , take care be kind to yourself x

P.s I asked for the bone scan because I was worried about a persistent pain in my shoulder that I had had for a couple of months and I think that was what swayed my surgeon into agreeing the bone scan. I did ask about blood tests to monitor me moving on but my surgeon didn't seem to think they would offer helpful info. I think the Oncotest will become more widely available with time, some counties are paying for it now. My surgeon said I could be referred to another trust to see if they would pay for it but it could have been anywhere and I wanted to continue my treatment in my own home county. The test has a set of criteria for eligibility I just happened to tick them all node clear, invasive cancer, stage 2 ER positive HER2 negative. I think the decision about leaving the nodes in or not depends on where you are. They originally thought my lump was just DCIS and that was why they left nodes-that's what they do here. They only operated and took the nodes when it turned out I had some invasive cancer as well .  Need to sleep now exhausted , take care be kind to yourself x

This is the best news - I am truly delighted for you getting the positive results.  You must have felt weak with relief when they told you.  Thank God the bone scan was clear.  When will you start Radiotherapy?  Do you start taking the Tamoxifin at the same time or does that come afterwards.  I haven't read much about side-effects but I can imagine there is but hopefully your body adapts.  My friend who has had breast cancer three times over the past 20 years and is still going strong in her 60's, said she actually felt better taking the Tamoxifin and felt as though she had more energy and was stronger for it.  I am hoping that I feel like that too!!  I will keep you posted re 25th.  Am hoping margins are clear now and have just been reading other posts with similar situation.  It is a big step to have a mastectomy but do you keep going with re-incision just in case they clear it all.  I felt I had made my mind up that I would go for a mastectomy, but now I think I have recovered quite quickly this week after Tuesday and if they feel the appearance will be okay, if margins not clear, maybe give it one more go.  I don't know - feeling unsure about it all.  I am small on top so doubtful that anyone would ever know I had only one boob.  Will have to keep researching.  Take care and so glad all is well with you. Please stay in touch.xxx

Hi , just a quick hello to say good luck with your results on 25th. Off to Scotland on 20th so look forward to hearing your news on my return. Have a date for my first radiotherapy appointment on 29th September to have all treatment outlined. Will also start Tamoxifen on that day . Already having some hot flushes so bit worried that they will get worse, have read they can do! Oh happy day!   Have everything crossed for you x

Hi Bernienb- anyone out there.???? Worrying about you and the outcome of the 25th. Update me if you are able  to. Had my tattoos today for radiotherapy including a very annoying little one in the middle of my cleavage that looks like a blackhead! Felt really wierd having 2 big burly guys manhandling me (albeit gently !) up to this point have only been seen by women. Need to start my Tamoxifen today but feeling really reluctant to do so, I am worrying about side effects.  I really hope that you are ok, remember we are survivors! 

Hi Kalisunshine - sorry I have not been on the website for over a week now.  I hope you had a great holidaay and all went well with you.  This is interesting re: radiotherapy and the tattoos. I had no idea this all happens.  When do you start?  Have you started the tablets and how do you feel?  Please let me know.  You are a few steps ahead of me so any info so appreciated.  Went to surgeon last Friday - margins are clear - no more reincisions - I was so pleased, and she did stress that the statistics show there is relatively little difference in cases like mine having a mastectomy or a lumpectomy, with the cancer returning etc.  All that she found was LCIS which means I have an increased risk of developing breast cancer - it is abnormal cells but as I will be having regular check-ups, they can keep an eye and also radiotherapy will zap these cells.  I am relieved and so fortunate that things are looking positive.  I keep trying to remember we are survivors.  I just worry of the risk of it returning, but surgeon said you must think about the amount of women that do survive and percentage that don't, is low.  Just would prefer not to be in this situation like so many people.  Really hope things are going well for you.  Seeing Oncologist on Monday so I will let you know how things go.  Take care and sorry I have not posted.  xxxx

Yeah! I am hanging out the bunting and opening the champagne!!! So glad to hear margins are clear such good news I was fearing the worst. Really pleased that the diagnosis is LCIS such a positive outcome. Now at last you can move forward to the final stage of radiotherapy. My tattoos are just 3 dots, one on each side of me and the one in the middle. They are to make sure that the radiotherapy beams are set up in exactly the same place each time. I start on Oct 8th, 15 days excluding weekends. I have been advised by friends to keep absolutely plastered in moisturiser for the duration. As you know I have been using Bio oil every day since my scars healed. I have arranged to take the week after it all finishes off work as I have been advised that is when I will feel most tired, we will see how it goes. I do know for certain I will be guided by how I am feeling and I will be resting when needed. No more heroics for me! My sessions are mostly at same time 12.50 but some at 3 so fairly disruptive to my normal working day. But the fact that I will probably end up unable to wear my bra ( due to sunburn like symptoms) and can't use deodorant may make going to work tricky!,  I will keep you posted.  Brilliant to hear from you, your voice and the chance to waffle away to you has been really helpful. It's something about someone outside your normal circle of people isn't it I think, good to be able to share with someone in same boat!  Take care, hope oncology appointment goes well. 

P.s have had 3 doses of Tamoxifen and only thing I can report is wierd dreams! Have noted that others have said similar. However have decided not to read the leaflet in the tablet packet or any more on line stuff in relation to Tamoxifen and just be as positive as possible, I am working on trying to imagine it as a very special, very precious pill that is giving me the gift of life. X

How are you doing?  How is the treatment going and how are you finding it?  I started taking the tablets (Tamoxifin, yesterday - feeling a bit strange today and like you did not read any literature or leaflet inside the packet.  Trying to ignore any feelings I may get and if I don't know too much I maybe will not attribute feelings towards the tablets.  Five years is a long time!  I went for Radiotherapy planning last week and will start first session in just over 2 weeks.  It was okay and I was not there for long.  How are you finding it - are you tired or is it just tiring going to the hospital everyday?  Went to see the Oncologist three weeks ago - he was positive and upbeat and very informative about the treatment and how it works.  He described that tablets as a net that catches the hormones before they could travel to an area where they are likely to be used to increase a cell to grow in a cancerous state - I probably have not explained that very well, but it made sense at the time and now I cannot remember his exact words.  How do you feel overall?  I really hope you feel well.  I haven't had much time to dwell on things, its just notification of appointments and you go and that's it.  There is no time to pause and think about what's really happening. It does feel like a bit of a dream. And I feel like you - it's good to talk to other people who are experiencing situations like ours.  I am meeting a lady next week that I only know through my other half's work and she had breast cancer.  I find I am really keen to know how they got on, what stage they were, treatment given etc.  But the other side of it is that you maybe would rather not know.  Do you know what I mean?  Confusing feelings..   Take care...xxx

Hi , nice to hear from you. I have had 11 sessions! 4 more to go and counting. Where to start..... Well I have been covering myself every morning with double base gel- slightly odd stuff but was told it could help! I also reapply it when I get home after radio. And then at night I apply Aveeno which someone else recommended and occasionally Simple moisturiser- I am throwing everything at it! So far my skin is pretty good- a very faint pink tinge but hardly noticeable, I seem to have what look like little pink spots in places but no causing any harm. Only bit noticeably irritated is my nipple which is very pink and has become quite tender and weirdly hard at times. The hospital have given me hydrogel dressings which are like strange little jelly squares to put on nipple under my bra and they do help.

The daily process is taking a bit of an emotional toll on me,  I sat and cried in my car on Friday after the treatment. Most of the Radiographers are lovely. They generally bother to introduce themselves, ask how you are etc but occasionally I have come across someone who is having an off day who doesn't seem very bothered and that's what happened Friday plus it was the end of my first 5 in a row.. I think the emotional impact is underestimated. I think just waiting with all the other people is emotional so many in headscarves etc, some looking very ill. Makes me think I am lucky really but I can't always hold onto that! 

There is quite a lot of heaving and pulling you about to make sure that you are in exactly the right place. I was asked if I was happy to have male Radiographers but said no and for me this was the right choice, I feel more comfortable being pulled about at very close range by women! There is no pain, nothing much going on part from machines moving about and whirring. It can be a bit nippy at times but they always put 2 squares of paper towel over my boobs before they leave the room and funnily enough it does make a difference to how vulnerable and exposed you feel. Some days the process is slightly longer than others as they have to do photos as well, so between 5 and 10 minutes once it starts but about half an hour all told with the lining up first. Everyday there has been a waiting time on my appointment, it has varied between 30 minutes and 2 hours so don't make plans ! Mine are all at lunch time, they were originally around 5 but I said no I couldn't do this time, glad I did as the wait seems to build during the course of the day. I usually come back and just read, watch T.v etc. I don't think i am too tired but my emotional frailty is probably a sign that I am. I am still working every morning. I have booked a week off after my treatment, they say the effect is cumulative and can make you fatigued for several weeks after treatment has finished. 

Plodding on with Tamoxifen, no more dreams and I suppose night flushes are slightly fewer-4-5 times a night?  Some in day too but not too many. 

I hope that your treatments go ok, just something else to deal with and get through then maybe we can get back to normal a bit! My mum has had surgery today to investigate a mass in her pelvis we are all just praying it is not ovarian cancer. 

So overall I am doing ok with just one or two wobbles! Please let me know how you get on too. Xx

Hi - thank you for the info above - it is really helpful, but first of all, how is your mum?  I hope she is okay and her results were all clear.  I went today for the group meeting where you are shown around the department and they talk through what will happen, so a lot of what they said I remembered from your post which was really helpful.  I start next Thursday and the appointment times all differ as they are so busy, but it will be manageable.  I like you felt very fortunate only to be having radiotherapy.  I would rather not be in the position I am in but I know that it could have been a lot lengthier process and more treatment etc.  So I do thank God very much.  I hope the treatment is nearly over and you are feeling well.  Yes, emotions are high.  Even going in there today I felt a bit teary and I don't know why.  I hope I can keep up the mask over the next couple of weeks.  Tablets okay but forgot to take one night.  I am wondering if my cycle will be affected and things change but I will keep a note of it all and try and monitor etc.  I haven't had any funny dreams yet, but last few nights woken up and found it hard to get back to sleep. Maybe I have taken the tablet too late.  Thanks so much for writing what you have - I am sure it benefits so many people who are about to embark on the treatment and it's helped so much writing to you too and hearing about your experience.  I will write after next weeks session and let you know how it goes.  Keep going now - you are nearly there.  Take care xxxx