Breast Cancer Now Forum

I was diagnosed with TNBC last year at age 66. I have never smoked , don't drink, am pescatarian i.e. Vegetarian but eat fish, eat lots of fruit, use olive oil in cooking, exercise regularly and still I got cancer. These articles seem to me to be searching for reasons for hormone negative breast cancer based on incomplete evidence and could lead to many women blaming themselves unnecessarily for getting breast cancer. Of course having a balanced diet is the right thing to do for good general health but being the answer for women to avoid hormone negative breast cancer - probably not. Until cancer research gives us the fundamental causes of TNBC all we can do is hope we do not get it. However my good health apart from TNBC has given me a good recovery from surgery, chemo and rads. Elle ... View more

Hi Pam how are you? My burn has almost vanished now and my hair is starting to grow now that I am 3 months past chemo and 7 weeks past rads.  My hair has always been very fine so it will have to grow quite a bit before I can discard my hats. My energy is starting to come back thank goodness and week on week I can tell I am doing a bit more. Unfortunately I have lost some fingernails. I thought my fingers would be very sore but the new nails had grown enough so that they were not sore but they look terrible. I am still a bit sore when I stretch my arm up high but I hope to get back to swimming now that my burn is almost better and that should help.  The oncologist has discharged me and as you know we TNBC have no ongoing medication. On my bad days I still worry about recurrence but I think everyone does especially in the first two years. Hopefully I will be able to put the past 6 months behind me and get on with my life and I look forward to having hair and finger nails again. Hope you are doing well. Best wishes Nell   ... View more

I was diagnosed with TNBC stage 3 grade 3 in April 2016. Had masectomy and full node clearance in May (2 out of 26 nodes affected) then 4 cycles of TC chemo then 15 sessions of rads finishing 3 October. Chemo was hard but rads were no problem - just a bit tiring with having to travel every day. I used R1/R2 cream and my skin was ok. I did not wear a bra unless I had to and bought a number of M&S white t shirts with half sleeves to avoid skin on skin contact, I was not bothered if they got marked with cream as I planned to throw them  out once all my treatment was finished. I switched to E45 cream after rads and a 4 in x 2in burn developed on my collarbone 10 days after rads finished. My GP prescribed Fucidin cream and it has cleared up. I am now signed off by oncologist who said my skin looked pretty good and the burn mark was almost gone. My energy is returning and I am a lot less tired now almost 3 months after end of chemo.  The moral of this is make sure you cream the whole area being treated by rads  including the collarbone area and contact GP if burn does appear. As I am TN I was very pleased the NHS threw everything at it.  Best wishes for your rads sessions. They are a doddle after chemo. Nell         ... View more

I have burn on collar bone that appeared over a week after rads ended. My skin was fine during rads and only my collar bone is affected now after rads. GP gave me Fucidin cream and I can see a big improvement after only 2 days. I waited a week before I went to see him and wish I had gone earlier.  Hope you get the right cream for your skin and it improves quickly. best wishes Nell ... View more

Hi Sue I bought R1R2 and used it for the 3 weeks of radiotherapy. My skin was ok with no redness. About a week after the end of rads I developed a burn like redness on my collar bone and now more than 10 days later (17 days after the end of radiotherapy) it is still red and sore but gradually getting better.  I was always careful to apply cream to collarbone as well but switched to E45 after radiotherapy complete. With hindsight I should maybe have continued with R1R2 after radiotherapy completed.  The rest of my skin is not red at all.  Hope this warning helps you and others as the burn is in a very awkward place as clothes can rub it. Nell ... View more

Hi everyone. Hope you are all progressing well. Had last chemo session on Thursday and Picc line removed afterwards. What a relief the Picc line was compared to cannulas every time but now it is gone it was lovely to have a steep in the bath on Friday. SEs not too bad mainly tired and just want to doze. Avoiding nausea with medication and small meals.  Oncologist thinks I have done well as my blood tests were OK each time but I suppose I think back to how I was before this started and feeling so fit and healthy. Planning session and scan for radiotherapy on Monday and then treatment starts 9 September and finishes on 3 October. Roll on 4 October.  Feel like I am halfway through now and thinking about a short holiday before radiotherapy starts as SEs should be better. I have been reading up on tips for radiotherapy on this forum - a lot of very good advice is given. Best wishes Nell         ... View more

Hi Joss oncologist will prescribe anti nausea pills and if the first lot do not work then contact your GP or oncologist for a different one. It's trial and error but Odansetron has worked well for me. I did not vomit just felt nauseous. My first chemo cycle was the worst one but number 2 and 3 were better probably because the medication was better suited for me. Glad you have taken the first step and bought a wig.  I found it helped to be doing things to help me through the chemo. I also bought a couple of hats. your Breast Care Nurse should be able to answer many of your questions if you phone her with a list of questions re injections to boost white blood cells and minimise risk of infection - a lovely district nurse calls in 24 hours after chemo to give me the injection which is provided by oncologist. She also comes in once a week to flush and dress my Picc line. your oncologist will decide what chemotherapy combination is right for you but once you know it then the McMillan web site has lots of info about the different types.  Many ladies get FEC-T but I am on TC. hope you are starting to come to terms with all of this. I knew nothing about breast cancer before all this started but thanks to forums like this one I have learned a lot. best wishes Nell     ... View more

Hi Joss clear lymph nodes is great news. The cancer has not spread and has been caught early. I had 2 out of 25 lymph nodes affected and the full lymph nodes clearance gave me the most pain. The masectomy scar healed well but under my arm is still a bit numb but also sore which seems a contradiction. I also felt angry and cried a lot initially as my life was very happy and we had all sorts of plans for retirement which had to be put on hold.  Not cancelled but postponed until next year. I kept thinking why me - I have never smoked, don't drink, exercise etc but cancer happens.  I also did not want to talk about it as that was my coping mechanism. Even now if someone asks how I am doing I give a brief upbeat reply and then change the subject. all I can suggest is have a good cry and scream in private then wash your face and try to do something you enjoy - by yourself if you cannot face anyone and do not want to talk. My dogs helped as I could talk to them. However everyone is different. Have you talked to your GP as they might be able to prescribe something to help? Maybe you are still suffering the after effects of the operation. hope you start to feel better soon. The next few months will be hard but then you will get back to what you were doing before. best wishes Nell   ... View more

Hi Joss Hope you are recovering well after surgery.  My first chemo session was about 2 months after surgery and started 1 week after I saw the oncologist so I had pretty well recovered from the surgery. TNBC is not necessarily the worst kind as it responds well to chemo and radiotherapy.  After 5 years the recurrance rates are lower for TNBC and we do not have the side effects from ongoing chemotherapy medication.  I was scared at first but now I am trying to look on the positive side. However chemo is hard and you will need support from Breast care nurse and GP to deal with the side effects of chemo but they are manageable.  My treatment plan was 4 cycles of TC chemotherapy and I have one cycle to go now before radiotherapy in September.  I have found it easier to cope with side effects for the second and third cycle probably because the medication is more tailored for me.  I tried cold cap but gave up and so far my hair has thinned a lot but I still have quite a lot.  My hair is short, fine and silver so probably the hair coming out is not too noticeable.  We have to vaccuum regularly for the dogs so now I contribute my hair as well. This forum has lots of tips and I have found it very useful to plan ahead on what I will need to cope.  eg Ginger snaps and ginger beer for nausea. With my best wishes for the future. Nell   ... View more

Hi AngeNut.  Hope you are doing well. I have recovered well from second chemo session on 7 July. This time different anti nausea pills worked well. Picc line great as no digging into hand for cannula. Injection for white blood cells no problems.  Gel from GP sorted very sore mouth. I was very tired as you described but giving into a couple of days in bed helped. Lovely district nurse coming in once a week to flush Picc line so I am lucky I do not have to drive to get this done. Ready for chemo #3 on 28 July now and feeling I can cope with it better now. 2 sessions down, 2 to go and then radiotherapy. Surprisingly I still have most of my hair although it has thinned out a bit.  Wig being held in readiness in case I need it after next session. My experience this time compared to first chemo really show how getting the right medication helps enormously.  Hope your second chemo session goes ok with not too many problems. Nell ... View more

So glad you have a supportive family. I don't know what I would have done without my wonderful husband. On my bad days I think about single mothers going through this with young children and I don't know how they manage. Like you I only told the immediate family and now only on need to know basis. I guess my way of coping is not to think about the thing until I have to but must admit I did my research to know what was coming along the line and that helped me feel to be more in control. Eg front buttoning cotton pyjamas are easier after the op.  I also am getting quite good at changing the subject to something more cheerful when I don't want to go into details of what it is like and how I am feeling. Should have also said I had a PICC line fitted before the last chemo session and it is a lot better than the nurse digging into my hand to insert a cannula every time.  Also it saves the veins for the future. I can only have cannula etc on my right  hand as lymph nodes removed on left side. Wish I had asked for this before chemo started. It's a horrible few months but after it is over we have to make life get back to normal. We had to cancel big holiday to Australia for September but next year we will re book. wishing you all the best  Nell ... View more

I was diagnosed as TN in April at age 66. Big shock as I had always been fit and healthy. Had masectomy and full lymph node clearance on 10 May as lymph nodes affected.  Started chemo on 16 April to be followed by radiotherapy. I made a good recovery from op and so far no sign of lymphodema which was a big worry.  I did my arm exercises and I think that helped a lot.  In the beginning I felt angry - why me, why now - but there is no explaining why cancer strikes. I cried a lot but now I am just focused on getting through the next few months and looking ahead to next year.  Chemo is hard but there is no alternative for TN and at least we will not have the follow on drugs and their side effects.  There are good days and bad days. You will get through this. Ask lots of questions - write them down because you will forget and there is so much to take in. This forum has lots of information about medicines that help with chemo and don't be afraid to ask your doctor about them. My first anti nausea drug did not work very well but the second one Ondansetron was much better. My GP also gave me a gel to help with my sore mouth. With hindsight I probably struggled on too long before asking for help as I have never been one to go to the doctors less I was really bad. Take each day at a time.  When people say I are a strong woman and will get through this as lots of other women have done I try to smile and thank them and then go away privately and scream. After that I do a Scarlett Ohara and say tomorrow is another day. You may react differently as everyone is different. hope I have not worried you even more. Nell ... View more

Hi everyone had second TC chemo last Thursday July 7 and doing a lot better this time.  2 sessions down - 2 to go. Better nausea control with Ondansetron but seem to be more tired than last time.  Spent Sunday in bed. Picc line much easier than cannula. Lovely district nurse coming every week to dress it and also to give me white blood cell boost injection day after chemo. So far no joint pain but lovely breast care nurse said take ibuprofen after injection as once joint pain sets in it is difficult to make better.  Mouth very sore but pineapple juice and fresh pineapple are soothing it. Could not manage cold cap this time as too painful.  Nurse said second time is often worse. Hair thinning but not coming out in clumps so have not worn wig yet.  I have bought suburban turban hat with peak which friends think look great as I did not like the thought of my wig blowing off when walking my dogs on windy beach. Really pleased to read all the hints and tips on this forum which make chemo bit more bearable.  Radiotherapy late August so now reading hints about that. Nell ... View more

Very glad your infection is sorted before chemo. The hospital considered giving me an injection to boost white blood cells but thought I would build up without it. I did not push for it because I thought the chemo might work better if my own defences kicked in naturally but I will check all this out at next appointment. This forum gives so much information to better equip us to ask the right questions. It's so useful.  Hope you continue to feel well. Nell ... View more

Hope you are still doing well.  I am just home from hospital.  I went down with a urinary infection just when my white blood cells hit zero so it was intravenous antibiotics for 4 days which sorted the problem.  Home now with another 4 days antibiotics.  You were very wise to get antibiotics for your infection before you get a big problem.  I had done dentist and chiropodist before chemo but got hit with infection anyway. Had to have a single room because of  risk of infection. It was amazing how my white blood cells were 0.2 on day 10 and today (day 11) they were 0.6 without anything other than antibiotics for infection.  Suppose that means I am healthy until chemo knocks me for 6. Feeling great now so hopefully next cycle will not be as bad.  Nell ... View more

Thanks Pam. Emand is on my list for next time. Also found ginger snap biscuits help with nausea.  I am never travel sick and have no children so nausea came as a surprise Nell ... View more

Hope things improve for you going forward. I had 250 ml and then 150 ml removed 2 weeks later and that gave me a lot of relief. Seroma nurse said there are  different painkillers from GP that target nerve pain eg Gabapentin. If your pain is nerve pain from lymph node removal they might be worth asking about.  My pain was bearable and I was reluctant to take more stuff when chemo starting.  Must admit biggest pain is from lymph node rather than masectomy.  Nell ... View more

Now that I have passed the 6 weeks after surgery my arm suddenly seems a lot better and the swelling from fluid is diminishing without more draining. Maybe it is because I am feeling a lot better 6 days after chemo.  Woke up during the night and suddenly felt better. Waking up was an improvement as I have not been sleeping.  My lovely Breast Care Nurse , Angela, phoned yesterday and reassured me I had done the right thing when I went to A&E with the nausea.  I knew that all I wanted was a different prescription but the doc there wanted to go through full triage with blood tests and intravenous injection of anti nausea medication. I did not want any unnecessary injections into veins so that can save my veins for chemo.  I knew I did not have an infection - it was just the nausea. In the end he was very nice and did a urine test and chest X-ray which were ok and my lovely husband drove down to the late night chemist to get the pills. Angela said I will get better anti nausea pills next time. I think I will have to be careful about infection now as my resistance is at its lowest and I feel like doing things now. I did not have reconstruction as I wanted a fast recovery from the masectomy and now that I have my proper prosthesis it makes wearing my bra easier. Maybe because it is more balanced now. My wound did heal very quickly and cleanly with no infection. It was just he nerve pain from the lymph node removal that was the problem. My tumour was aggressive so it was good they did not leave anything behind. Hope you do not mind the long update but maybe it's good to know that suddenly everything gets better. And also do not be afraid to insist on the treatment you know is right for you if you have to go to A&E. Nell ... View more

It's good to know I am not the only oldie with TNBC.  Getting over 1st chemo session. Had terrible nausea and finally went back to hospital. They prescribed a different anti nausea pill and now I feel much better. Was initially given Metoclopramide (seemingly it is cheaper) and then Ondansetron which has helped. Wish I had gone back to hospital sooner. Also nurse had problems getting cannula in. Next time I will drink more water just before and ask for my hand to be warmed up in hot water before they try to put cannula in and also before cold cap goes on.  I am using Philip Kingsley no scent,no colour shampoo and conditioner to try to keep my hair.  Time will tell if it works but it makes my hair feel nice. On a positive note, my arm is a lot better, less sore and almost full movement. Maybe soon completely better? ... View more