Breast Cancer Now Forum

Hello @Reshma , I am so sorry you have found yourself in this position. When I was diagnosed it took a long time to get my diagnosis right because of my dense breast. My case went to MDT four times before I had a definite plan. It was frustrating and difficult but as my nurse said, they wanted to make sure they got the treatment right for me.  We initially thought I had a 2.5cm HER2+ and a small area 4cm of DCIS. Initially no DCIS was spotted. Then one of my lymph nodes looked suspicious and I was sure it had spread. I had a mastectomy and it turned out I had 1.2cm HER2+ and an area of 16cm of DCIS! completely different to what we thought from the scan. They removed three lymph nodes and they were all clear. My dr said that having a cold or infection can make them enlarged and look suspicious. I guess they do not know for definite until the pathology results come back. Even if there is evidence of it in your lymph nodes, my friend, who is a Dr, told me that they are like the bouncers whose job it is to stop it. If it is in your lymph nodes, it does not necessary mean it will have spread anywhere else. Your team will adjust your treatment according to what they find and their are advancements in the treatment all the time.   I have a young son too and I was absolutely terrified. I could not sleep or eat and cried all the time. Your breast nurse will be a good person to talk to, I have found this site invaluable and I also asked to be referred to a psychologist and holistic centre to help me cope. I just tried to use all the help available. I am sending you lots of love, strength and support at this difficult time. Xxx ... View more

Hi @Typilipala , I was exactly the same through chemo and even had the spots in my scalp. Shaving my hair was a relief as they were so sore. I sent a picture to my GP and they prescribed a short course of antibiotics to help clear them. I ended up having two course throughout my chemo. I just tried to use the most gentlest facial products.  If it is any consolation, my spots cleared up as soon as my chemo ended. I know it is just another thing to contend with. Chemo is hard enough!  I hope you get through your chemo ok. Good luck with your treatment. Xx ... View more

Dear @Hardy1 , Your experience is nearly the same as mine. I had the coil fitted before my diagnosis due to heavy periods (I have had previous surgery to remove fibroids). I had to have the coil removed as I am HER2+ and ER+ (mildly 4/8). I had a period the first week of chemo but they stopped. I started on Tamoxifen after chemo ended in July. Since then I have had two huge bleeds/periods. I bled for 9 days and was so heavy I had flooding through my clothes and bedding. It was horrendous. I did not know where to turn. My chemo nurse contacted my oncologist, who told me to get a gynaecologist appointment through my GP. Luckily they had a cancellation so I was seen very quickly. I had to have a camera into my womb and biopsies (thank goodness for gas and air). I also had an internal scan. There was no thickening of the womb and just a few small fibroids. My oncologist said I might need injections into my stomach to shut down my ovaries but I have not heard from them since my results.  i am hoping when I stop Herceptin that all the side effects will settle down. My consultant said I might get back to normal periods but as I am 47, I might not.  It is so hard to know what to do. I hope you get sorted and some answers soon. I just wanted you to know that you are not alone and I have had nearly an identical experience but results were all ‘normal’. Good luck xxx     ... View more

Hello ladies, It is so lovely hearing from you all. @ML2022  I am really sorry about your break up; I can’t imagine how hard it is for you. It sounds as if you are being really brave and making lots of positive plans with friends and family.  @maggiemoo I hope you are feeling better. It sometimes feels as if we can’t escape breast cancer. Everytime I think I moved on, something brings it back to the forefront.  My sister has found the waiting the hardest. With it being over Christmas, everything has taken longer. They have performed biopsies, then a vacuum biopsy, then she was ready for surgery but at the MDT they wanted another vacuum biopsy. Her appointment with consultant is not until 31st Jan, so hopefully mastectomy shortly after.  I accompanied my sister to her biopsy on Wed. I had noticed quite a large lump had developed on my mastectomy scar. I thought it was scar tissue but when I was in the breast unit I asked a nurse to ring me. Amazingly, they had a Dr available to check it there and then. He said I would need a scan, which they could do immediately. Of course, I was back thinking it was cancer but was trying to be brave for my sister. They did a scan and found it was a huge pocket of blood (took 4 huge syringes to drain) caused by a trauma. I have been playing a lot of tennis (now I am unemployed) and I had really banged it on the corner of the table whilst trying to stop our new puppy from jumping on my son! He checked underneath and my armpit. All seemed clear. It gave me such a shock!  I had been so long in there my sister thought it was bad news and was so worried for me. I am really grateful they could sort it out there and then.   I am organising a black-tie ball on 13th Oct this year to raise money for the breast cancer unit (you are all welcome if you fancy a trip to the North-East) and doing the Great North Swim (I am really not a swimmer).  Since leaving work, I feel like a new person. I feel I have found myself again. I will get a job in the forthcoming months and have already been offered three different schools, but I want some time for me. I am taking legal advice too about how I was treated, as I strongly feel I was discriminated against because of my cancer.   I am still on Herceptin, and not sure if it is chemo fatigue or from Herceptin, but I am tired a lot. By the afternoon I seem to have no energy. It is probably the stress, worry and sleepless nights catching up with me from the last year. Playing tennis nearly every day, which I love, although I need to be careful I do not cause another seroma. We have a new puppy called Pepper (a sprocker) so she is I’ll keep me active. Sending you all my love and best wishes,   Nicky  ... View more

Hi @Guest user ,  I purchased an aqua boob for holiday and it worked perfectly; it was really comfortable and looked natural. I was worried about picking the size but used the size printed on the side of my prothesis box.  Did you buy a mastectomy swimsuit? They are really expensive. I bought a £60 one for holiday but by the time I came home it was see through - not a good look! I had to send it back and get a refund. I was just curious where others got their swimsuit from. I have just signed up for the Great North Swim so I need to get one pretty quick so I can start training (I am a complete novice) 😂! Good luck, Nicky ... View more

Hello everyone,  Thank you so much for all of your support, replies and sharing of your experiences - it does help and make me feel not as alone.  @jules_n  I hope you have had your biopsy results back and everything is ok. You are in my thoughts. Xx @Sunshinesonia i hope your mammogram went well. I went for my first one since diagnosed on Tuesday. She said she would not tell me if there was an issue as I am under a consultant now and he would have to read the results and it might take 6 weeks!! After a checking the images she said we could go and she said ‘See you next year’ so I am hoping that was a sign she could not see anything sinister on my remaining boob. 🤞  @Shi , your analogy of the wool is very apt. My wool is clearly got lots of knots in! I really appreciate your kind words and understanding. X 🧶  I also resigned from my job! 😬 I can’t believe I have done it. I have worked there 20 years! I could not cope with the stress and pressure and having cancer does make you reevaluate. People have said that they can’t believe the difference in me - in a good way. It is scary leaving a well paid job where you are established and secure but I know it was the right thing. We sold one of our cars and that should give me a few months to finish my Herceptin and find something I want to do. I am not even sure if I want to stay in education. I have already been offered jobs, as teachers in my subject are difficult to find, but I have not accepted. Luckily I have a really supportive husband. I am still bit nervous about it all but I feel an opportunity will present its self when the time is right. Maybe I am crazy!  Sadly, we found out yesterday that my sister has been diagnosed with breast cancer. She is 48. It is nearly a year to the day that I was diagnosed. Our whole family are in complete shock. Luckily she found it earlier than I did. She went about a cyst on the other side. At the minute she will need either a lumpectomy and radio or a mastectomy. She is still awaiting results. Hopefully my experience means that everyone is a lot more vigilant about checking their breasts and it meant it was caught earlier. At least I can support her as I have been though it. Does anyone know if we would qualify for genetic testing now? Two siblings under 50. They did not bother testing me, I assume because we had no family history. We have one other sister who is now really worried. Has anyone had this done?  I hope everyone is doing well. Sending you all lots of love and support. Xxxx     ... View more

It is lovely to hear from you @Sunshinesonia . I hope your mammogram was ok. I can imagine going back for one could be really emotional. I think my one is in Dec.  @Sunshinesonia and @ML2022 , it sounds as if the feelings, emotions, worries and difficulty adjusting to the ‘new normal’ are common. I am sorry and send my love to everyone struggling. I met my counsellor today, who was great and helped me. I think I am going to resign from my job of 20 years. It is a big decision but I need to cut out stress and pressure. We are going to sell my car, which will give me a few months to get stronger and properly recover, then hopefully I will be ready to find a new, part-time job. Money is going to be really tight but hopefully we can get through it.  I keep apologising to my husband too for putting us in this position.  I still feel like I don’t recognise myself, both physically and mentally. I hate my short, wavy hair and it still makes me queasy when I touch or see my mastectomy scar. It is so hard as I feel I feel I should feel lucky and positive that I have had this second chance and managed to get through the last horrendous year, and there are times I do feel like that, however, this period is really hard.  I am sending my love and support to everyone. Thank you for your kind messages and support. I cannot put into words how much I appreciate it and how much help it has given me. Xxx ... View more

Thank you so much @Shi  and @ML2022  for your replies. I cried (as I seem to do at everything) reading them, both with relief but also with heartbreak for the impact cancer has had on us all. I am so sorry @ML2022  that you are finding it difficult too, yet you still have taken the time to write such a supportive, lovely message. Thank you ❤️ I am also sorry about the impact it has had on your marriage. I can understand completely. I keep apologising to my husband for how I have changed physically, emotionally and the changes it has caused financially. It has changed everything. I am glad you have lots of good support around you. 💕    It does help to know I am not alone in finding it difficult. I see a counsellor, as well as a psychologist, and it does help. I thought I was doing really well until I returned to work - then I just imploded. Maybe I need to reevaluate if I now want to work in such a stressful, pressurised job with ridiculously long hours. It makes me feel angry and sad that cancer is now robbing me of my career that I worked so hard for. I am trying not to react too hastily and then regret stepping away in the future. At the minute, just the thought of work gives me such high anxiety that I feel sick. My sister said last night that she is frustrated that I survived the worst year ever but now work is causing me this amount of upset.  I am aware, through my counselling, about the different stages of grief and that the process is not linear. God, it is hard!  I also wonder about the side effects of Herceptin and if I have under estimated the impact. I know the majority of people get through it with no problems, and initially I was fine, but it has definitely got more difficult. When I researched the side effects of Herceptin low mood and depression are associated with it as well as just having treatment for cancer. Alongside other side effects I am experiencing, such as diarrhoea, eye problems, broken nails, fatigue, aching body, anaemia… I am on Herceptin until April.  Thank you again for your kindness, support, honesty and advice. I really appreciate it. Xxx ... View more

Hello everyone, it is lovely to hear how you are doing. I hope you are all managing with the side effects and growing stronger each day. I just wondered if anyone is struggling going back to work? I was doing a phased return but have just had to go off sick again for a month. I returned as my money was about to stop, rather than I felt ready. Mentally I was struggling as I felt to anxious, not sleeping or eating. I just felt I had lost my confidence in everything and found myself crying all the time, which is not good in a school.  On the second week of my phased return I started a very, very heavy period for 9 days. I just felt wiped out, in pain and a mess. I could not get through to my dr but the chemo nurse rang my oncologist. She said to get checked out by a gynaecologist but she suspects it is a period, which I should not be having. I am on Tamoxifen. I may need injections to fully stop my ovaries. The hospital saw me quickly and I had a camera and biopsies in my womb and a pelvic ultrasound to rule out anything sinister. I am still awaiting results.  I will also have a new appointment with my oncologist, who had signed me off but should not have as I am still on Herceptin.  Physically and emotionally I just feel I am struggling. When I spoke to a nurse I just started crying. I am been prescribed anti depressants and am still seeing the hospital psychologist. I just feel I have ruined my body, my career and all of our plans as a family. I can’t see how I can go back to my job.  I was diagnosed exactly a year ago and finished chemo nearly 4 months ago. I thought I would feel a bit better than I do. Has anyone else been feeling similar?  Love to you all xxx ... View more

Hello @LadyErry , I think you have been extremely brave and I admire your courage. You did what was right for you, which is the most important thing.   The thing is with education, your job is never done. I have been in my school for 20 years but worked in an office job prior to this. When I worked in an office job I could focus on my own work, myself and interact as much or as little as I wanted. In teaching it is 100mph and I describe it to my husband as making one hour presentations back to back, as well as dealing with behaviour and staff. You can’t do a half job or take your foot off the gas, can you? The pressure for results is another added stress.     I was working crazy hours before my diagnosis. I was going in most mornings at 6.30am and staying until 5pm then working most nights when I got home. It is unsustainable!   You don’t need help managing your time better - it is just the nature of the beast!  I hope they find another job for you so you do not have to leave. I completely understand your decision. I wish I could make up my mind what I want to do. Since my diagnosis I feel I am just scared and nervous of everything.  Since my meeting at work I have been a complete mess. I feel so down and have an anxious knot in my tummy. I am seeing the hospital psychologist today and meeting up with a woman who had breast cancer at the same time. I also went back to doing the daily mediation from Headspace (teachers get it free and they have one for a cancer diagnosis), which I started when I was diagnosed. I am doing Pilates and regular tennis. I am also looking forward to the Moving Forward course in a week’s time. I feel I am doing everything I can to help ‘fix’ myself but  I just feel really down. I can’t fit in anymore ‘well-being’ activities!!  Like you @LadyErry  I just don’t feel I have the energy to do it anymore but financially it is scary dropping down a wage and I worry we won’t manage. I need to have a long hard think about what I want and need.  On a positive note, my friend was Head of Dept and working long hours. She just had enough of it all and resigned. She has been running small art classes and doing a bit of supply work. One of the schools was absolutely gorgeous and a job came up for a part time cover supervisor and she was offered it. She is so much happier and know she made the right decision for her mental health and work/life balance.  I think we have had so much upheaval over the last year it is all frightening but hopefully it will get easier over time.  I hope you are ok and feel a sense of relief about your decision. Hopefully we can keep in touch. Xxx ... View more

Hello @LadyErry , I could have written your post myself. I feel exactly the same as you. Since the meeting I have felt to anxious and worried about everything but I am sure I will calm down soon.  Good luck with your meeting. I hope everything goes well. I am sure your new, shorter hair look fab on you. Let me know how it goes. Xxx ... View more

@LadyErry , I had my meeting with my Head and HR and it went well. I was really nervous going in and was running on adrenaline. I got lots of hugs from people I saw around school.   Whilst waiting in the reception, one of the Y10 boys asked me where I had been, what had happened to my hair (wore turban in the end), what chemotherapy was…. And also said he was sorry I had been through it. 💕  Head and HR were great. They asked me now I was and where I was with treatment. I explained the side effects I had. I said I was thinking of returning after half term. I did not realise but I only get paid for the hours I do on a phased return, which puts a lot of pressure on to do more hours financially. I agreed to try to do mainly mornings, so I could take over a y11 class. I was told that they could be flexible and if it wanted to keep all responsibilities, give up some or all of them, I would be able to. I just said that I did not know what I was capable of until I tried.  I said I would pop in a few times before I start back to meet people socially. HR was good actually at calming me down and stopping me agreeing to too much. It is easy to get carried away in there, as you want to prove you are keen and still capable (even though I don’t feel I am inside).  I had a walk around school after and met some new staff and lots of my friends. I felt like I was the new girl, which I did not like.   After I got home I had a complete melt down. I knew it was always going to be a big hurdle going back. I have not eaten since yesterday morning and went to bed at 7pm exhausted. I just feel so nervous and anxious. Am seeing my counsellor today, so hopefully that will help.  The anxious knot in my tummy that just won’t go away.  I have a friend at work who has also just returned after cancer treatment and she text me last night and said everything I described and all my worries were and are exactly as she feels. She has found it hard.  My husband keeps reminding me of all the positives we have and the fact I am fit enough to return to work at all, and I know that. But, I can’t help thinking how much I hate these situations and feelings of returning yet none of it was my choosing or fault.  I did not take in a representative with me. I just took a notepad with my questions on but I did not use it. It probably gave me confidence going in there. What I would say @LadyErry  is it is never as bad as you build it up to be. They are supportive and everyone is so kind. However, I was not prepared for how I would feel when I got home.  I hope you meeting goes well. X I am really interested in hearing how people who have returned to work feel and how the first few weeks went. Xxx ... View more

@LadyErry  I know exactly how you feel. I have read on all the websites not to make rash decisions about leaving work but I know feel I am up against a clock. It is a hard decision as teaching has a good pension and holidays but the hours worked in between are exhausting.  It is hard enough to get out of teaching normally, never mind after such a diagnosis and blow to my confidence! I have even looked at setting up my own business. A friend of ours packed his job in, bought a vintage van and set up a little coffee van. He is out in nature every day, chatting to lovely clients and maybe not earning as much but is so much happier. I just feel the diagnosis has made me scared of everything - going to work, leaving work, setting up my own business which earns enough…. I will let you know what they say. Maybe I am building it up to be something it won’t be. 🤷‍♀️   I hope you eye is ok. Xxx ... View more

Oh my goodness @LadyErry  , you sound in exactly the same position as me. I really appreciate your reply and I am sorry you have had to go through what you have. It feels a relief to know that other people feel the same. as I do.  Thank you for your tips about the meeting. I rang Macmillan work phone line yesterday and the lady was really kind, understanding and helpful. She explained about the Equality Act 2010 and what ‘reasonable adjustments’ might look like.  Like you, I don’t want to be going in at 6.30am, working until late and then working at the weekend. I have a real fear about by cancer returning and I don’t want to look back and regret I did not spend more quality time with my family.  As you know, in the world of education you can’t ‘take it easy’ and there is only one speed!  I have even started doing the lottery regularly and phoning in to competitions, but my husband saying it is not a strategy and is in fact gambling!! 🙄  I just hope they allow me to go part time whilst I am still on Herceptin. I want a day or two to walk my son to school and pick him up. I am going to say at the meeting that I am doing everything I can to help me to prepare to return e.g counselling, exercise, Moving Forward course.  I will let you know how the meeting goes. You are right, this is so much harder than I thought it was going to be. Xxx ... View more

Thank you @ML2022  and @maggiemoo . We are having an amazing time and making lots of special memories.  Thank you for the tips about the scar. I have religiously used Bio oil on it but just slapped it on every day. Looking and touching it makes me feel a bit queasy but I need to get over it! I will definitely be giving it a go. I am also getting a lot of downy hair on my face. I feel I am growing a beard! I can’t remember what it was like before hair loss so maybe I am noticing it more. It is a side effect of Tamoxifen I think. With my very short unstyled hair, beard, black tie nail, extra weight, one boob… I am not feeling very glam on holiday 😂 my husband keeps saying that is just one short period in my life and it will pass so I am just trying not to think about it.  I am thinking of you @maggiemoo  as you get your operation. I hope it all goes well and your recovery is quick.   Lots of love. X ... View more

Hello All, It is lovely to catch up with how everyone is doing.  @ML2022 and @MLT21 , it sounds as if you are getting stronger every day. @maggiemoo  Fingers crossed your surgery will be rearranged quickly and that is another major hurdle completed.  @ML2022  My hair is definitely too short for my liking. I bought a good real hair wig and I have only worn it about 5 times. It was just too hot over the summer. I do hate my hair this short but I know it will grow and it is a small sacrifice to make.I did put a semi permanent dye on it as it came back with lots of grey. I have about 2 inches already.  I had the meeting with the oncologist about the seroma (my scar from my mastectomy looks lumpy and awful, especially when I see how neat they can be). He said the seroma was only small and not worth draining. He called it a ‘dog’s ear’ - which is really attractive! The only other option would be further surgery, which I don’t want. Keeping it there will give me more skin in case I decide to have a reconstruction in the future.  I did not realise how upsetting it would be going back to the breast clinic and waiting in ‘Waiting Room 2’. I surprised myself as I cried the whole way there. The tears were just flowing from my eyes, without me crying, if that makes sense. I was so nervous they might find something else. The surgeon was lovely and gave both sides a thorough examination, which put my mind at rest, especially as I had swollen lymph nodes under my arm whilst I was in Ireland and thought it was back!  We are now on a family holiday between Herceptin injections. It has felt nice to fly away from everything and it made me realise how isolated I have been since my diagnosis (with not being at work and basically isolating through chemo). I took my son out of school and we have taken him to an elephant sanctuary and beach holiday in Thailand (I cleared it with the oncologist first). After the rubbish year we have had we just wanted to do something memorable and life affirming. The insurance was not too bad considering.  My energy levels seem to be improving and I will look to start a phased return to work in October.  I am not sure if it is Herceptin or Tamoxifen but I have put on a lot of weight. I have upped my exercise but nothing seems to be shifting. Before the holiday I was doing Pilates 5 times a week and playing tennis 3 times. Thinking I will have to start jogging too. I am looking forward to the Breast Cancer Now Moving Forward course, where hopefully I will meet lots of other ladies who understand and I can get some good advice. Take care everyone. It would be lovely to keep in touch. Xxx  ... View more

Hi @TeeCass , I have realised I have posted in a TNBC group when I am HER2+. I suppose the feelings about BC are still the same.  I am sincerely sorry you are back in this position. I am sending you all my love.  I am not sure I am the person to reply to speak to about feeling positive. I have been I. Such dark places - certainly when I was first diagnosed and going through all the testing and waiting. I just look for coping and distracting strategies. I certainly find reading the internet and trying to find answers on there the worst thing to do for anxiety. Have you asked for a referral to a psychologist or counsellor? As I have said, they have given me lots of practical suggestions on how to cope.  As I said in my previous post that using mindfulness (app), exercise and signing up for support groups all help. I bought myself a journal to write down my fears but also the facts I know to be true, which are often very different to the fears.  Remember feelings are not facts. You do not know what the CT scans will show but thinking the worst is how your mind if preparing you in case you hear bad news. The treatments for BC are improving all the time. From what I understand, people with secondaries can live for years with a good quality life. Do not just read statistics as many are out of date. Your consultants will come up with a plan, if needed, for the best possible course of treatment.  Be kind to yourself and give yourself a break - you have been through and are now going through a trauma. Your feelings and fears are completely understandable. Sending you my best wishes. Xxx ... View more

Well done @ML2022  I am really happy that you are at this milestone. Hopefully you are getting stronger each day. I know what you mean about looking back. I keep stopping and saying, ‘I can’t believe that all happened’; chemo also seems to have happened ages ago too.  As for anxiety, I feel the same and am worried I will miss the signs if it does come back. I do this my counselling is helping. I think about it every song me day, even if it is just fleetingly. This last week I have felt more positive and have kept busy. Upping my exercise is definitely helping my mental health. I am playing tennis at least twice a week and have started doing beginners Pilates five times a week (I am just doing a class on YouTube with a girl called Nicole). I am looking forward to the Moving on Course at the end of Sept. I think the thought of returning to work is difficult. Normally I am preparing to go back in Sept but am hoping to start a phased return in October. I am a bit upset as the staff handbook for the year is out and I have been deleted, despite me being a Head of Dept and Assistant Head! I am sure it is an oversight but it has really upset me.  I am going to bring it up with HR at my next meeting. @ML2022 it has been a rough ride, to say the least. It is still frustrating that everyone thinks it is over and it is just time to move on, but I know it is because that they have never experienced it.  Take care and keep holding yourself gently. Xxx ... View more

Hello @SoliMar , I am in a very similar situation. I was diagnosed in mid Nov and had a mastectomy on NYE. I finished chemo 7 weeks ago. I am already on half pay, which is not ideal, but I don’t think physically or mentally I have been ready. In Nov I will go down to no pay at all! I have worked at my secondary school for years. Like you, I am feeling nervous and anxious. Some weeks I still seem to have lots of appointments so not sure how it will all fit in. I can’t decide if being back at work, in a very stressful job (I am HOD, AHT and have a role across the Trust) will keep my mind off everything that has happened or if I will not cope. I suppose that is why we will have a phased return. Speaking to my Head, they have over staffed my Dept and I know they have not planned me in on the timetable for Sept.  Although I have not spoke to school yet about returning, in my mind I am thinking of doing a phased return starting mid Oct. It means I will have been off 11 months. I am still having Herceptin every three weeks and regular heart scans. I don’t even know if I should wear my wig or not.  I am sure the pupils will be lovely, 99% are gorgeous, but am worried if one says something horrible I will just break down.  I don’t know about you, but my breast nurse referred me to the clinical psychologist. The sessions are really helping and are very practical. I also see a counsellor. It has helped to take through my fears about ‘returning to society’. I have also signed up to the ‘Moving On’ course with Breast Cancer Now. I am hoping that will cover returning to work too.  All the professionals I have spoken to have said to not underestimate what we have been through, physically and mentally. I expected to bounce back as soon as the main treatment finished but I am now trying to accept that it is going to take a long time and the recovery will not be linear.  Be kind to yourself and take as long as you need, if financially possible. If you want to keep in touch we can compare notes about returning.  Sending you lots of love and strength.  Nicky x   ... View more