Breast Cancer Now Forum

Hi,   I have just come onto the forum for the first time in a year as I had my 4 year check up yesterday.  When I had my surgery (just a WLE and SNB so minor compared with yours) I also had a huge haematoma (I was like a lopsided Jordan) and they diagnosed a blood disorder similar to Haemophilia.  What I wanted to say was that they didn't just leave my haematoma or suggest massage (its hard to imagine anything more painful as it is essentially an enormous bruise).  My surgeon had me back in hospital under the care of a haematologist, he excised the haematoma and I had platelet and blood transfusions for 6 days afterwards, together with a drug called Novoseven.   It sounds to me as though you may have a blood disorder too and you should go back to your consultant or surgeon for further treatment or diagnosis.  If it is now too late to excise them as the masses have solidified, then rest assured that they will eventually disperse and disappear, maybe after months , but it will be painful and uncomfortable until they do - just what you didn't need on top of the cancer.     One thing to double check is that they are actually haematomas at this stage and not swelling from lymphoedema, in which case the right kind of massage would help with drainage.  You could search the forums for information on that if you think it could be a possibility.  Make sure you find a properly qualified lymphatic massage therapist if you need it as it is a very special, gentle kind of massage and a rough sports therapist would make the problem much much worse.   Good luck with your recovery.   E x ... View more

I had my 4 year mammogram and check up yesterday, though I was diagnosed on 6th October 2009 - I'll never forget that date either!   Everything was fine yesterday so I can relax for another year - and it does get easier with time.   Well done NAZ - now make time for yourself while the children are at school.   E x ... View more

Hi Amethyst, Sorry this is such a late response, but I only log in rarely now. I am 2.5 years post diagnosis and I managed to get life insurance in the middle of last year. It was a real ordeal and they needed a full medical report from my GP which took months, but I finally got £100,000 worth of cover for £45 per month - only 3 times the premium for someone my age without BC history. If aI am still well after 6 years, then the premium reduces to the normal level. This was through Zurich via an IFA. I am now nearly 49 and otherwise in good health. Good luck and stay well too! E x ... View more

Hi Peacock, It could very well be lymphoedema and you should get your GP to refer you to a lymphoedema clinic for assessment. You say that it is very painful and it appears to have come on quite quickly so there's a possibility that it might be an infection - cellulitis. If it becomes hot and/or gets any more painful over the weekend, you should go and see an emergency doctor or A&E since cellulitis can be very serious if untreated. You can read more about the symptoms and treatment of Lymphoedema on this website http://www.lymphoedema.org, but definitely get to a doctor for proper assessment as soon as you can. Good luck - E x ... View more

Hi Tanya, I also gave up Tamoxifen due to the SEs, but only after consultation with my onc when he confirmed that it was only going to make 0.66% improvement to my chances of being BC free in 5 years. I think there are a lot of women who may be taking Tamoxifen for very little benefit and that is OK as long as it doesn't affect their quality of life, but I believe you should understand all of the implications, good and bad, rather than blindly following the standard treatment plan. Question your doctors and get them to confirm that what they're recommending is appropriate to your particular diagnosis and pathology report. Before I got that agreement from my onc, I did extensive research and found absolutely no alternative to Tamoxifen for pre-menopausal women. If my onc had told me that it would make a significant difference to me, then I would still be taking it. A last word of advice - most doctors don't like having their judgement questioned so be diplomatic 😉 Fell free to PM me if I can help you if you do decide to question your treatment. Good luck! E x ... View more

Hi Sarah, Well done to you - this is a major milestone and you can start to make progress on your road to recovery now. What you felt yesterday is perfectly normal and you may find you have more days when you feel like that for no logical reason. Don't worry about it or feel guilty or try to snap yourself out of it. Just be kind to yourself and go with the flow. There is a really good article written by a counsellor called Peter Harvey and its been posted on here on many threads since I joined. It describes how a cancer patient feels at the end of active treatment and should help you to put this in perspective. I hope you can find it at this link, but if it doesn't work, then Google 'Peter Harvey Cancer Counselling' and you'll find it. http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/$FILE/article3.pdf?openElement I finished rads at the end of February and that was when I felt at my worst - even worse than after 2 ops, 10 days in hospital and multiple platelet and blood transfusions. It has taken me months to begin to feel anything like my old self, but I've now had my one year check up and I am free of cancer and feeling OK. Hang on in there and don't worry - you are on the road to recovery now and it will get better. There is another really good thread in the last couple of days - the upside of cancer. Have a look at that and also let yourself have a rant when you need to and you will get your equilibrium back. E x ... View more

Hi Ann, It is a bit confusing at first, but it allows you to do a kind of 'what if' analysis if you were to have chemo so you need to choose one of the chemo options. Try it with one and then do it again with the other to see the difference. As you didn't have chemo, like me, hopefully both results should confirm to you that it wouldn't have made much difference to your 5 and 10 year survival prediction. I found this very reassuring as my tumour was ER/PR positive, but decided to give up Tamoxifen due to the severity of the SEs and this tool tells me it would make less than 1% difference to my 5 and 10 year survival prediction so I know I made the right decision. E x ... View more

I had my first anniversary mammo and ultrasound a little early in the middle of August and had another core biopsy as the scar tissue looked a bit suspicious. It was clear and I saw my consultant last week and he warned me that the scar tissue may cause concern at future check ups and I should learn not to worry about it as they have to check even though they may be 99% sure its OK. Now I don't have to see him for another 6 months and I feel very relaxed and free after a year of turmoil. Its as if a huge weight has been lifted off my shoulders. I'm not the same as I was before BC, but I am OK and feeling well again. E xx ... View more

Hi Nicole, I am 47 and was dx October 2009 and had SNB (2 nodes), WLE and rads. Following my dx I transferred to private treatment covered by my insurance so I can't comment on the NHS except for a couple of aspects. Firstly, the support that I received from my GP which was amazing. I would not have got through this experience without him. From some of the postings on these forums, it is clear that this is not always the case and I have been very lucky. The other main area of treatment that I believe needs more focus and funding in the UK is in the diagnosis and prompt treatment of lymphoedema. I have lymphoedema in my operated breast (not my arm) and neither my surgeon, nor my oncologist, who are heads of their teams in the local NHS hospitals, were inclined to recognise it or realise that it could be treated and improved. Finally my BCN persuaded my oncologist to refer me to the specialist clinic (NHS) and I have received treatment and advice, but I have also realised that this facility is woefully understaffed. My last appointment was cancelled at the last minute due to a problem with the building and my rescheduled appointment was for 2 months later! I believe, from these forums too, that there are many more women who have undergone treatment for breast cancer, who are not being referred due to lack of knowledge of their medical team, and those who are referred are waiting far too long for treatment. Best of luck with your efforts at the Party Conference. I have had some email correspondence with our local MP who appears to be listening, but the more noise that can be made at high profile events, the better the chance that they can be persuaded to make public commitments to protect and improve services. E x ... View more

Hi NAZ, I came off Tamoxifen in April this year after 5 months of horrible SEs. I did it with the full blessing of my onc as he put my pathology report into a computer program called Adjuvant Online and calculated that it only reduced my risk of mets by 0.6%. He told me that he would advise his wife to stop the drug if she had the same circumstances as me. You need to have a completely honest and rational conversation with your onc. Tell him exactly what your SEs are and how they impact your life. Get him to calculate the risk and then you can make the decision. My prognosis was very good - grade 1 tumour, clean margins and no nodes involved. Your prognosis is different and you need to understand what the drug is doing to improve it. Then you can weigh up the benefits versus the risk. Good luck and feel free to pm me if you would like to. E x ... View more

Hi Haraskram, I'm glad you are going back to get this followed up now. Aside from getting treatment more quickly if needed, the weeks of waiting and wondering are very hard. The sooner you get peace of mind or know what you're dealing with, the better. Also, you are a young woman in breast cancer terms. Maybe not as young as many on these forums, but still young enough to have dense breast tissue. I am 47 and I was 46 at dx last year. Good luck - I'll be thinking of you! E xx ... View more

Hi Haraskram, I don't want to worry you, but my tumour couldn't be seen on the mammogram, even though it was a lump that everyone could feel. Younger women have denser breast tissue and this can obscure things. Did you have an ultrasound when you had the investigation in July? If you did, was it over the whole breast or just where the calcification was? If the answer to either of these is no, then I don't think you should wait 2-3 weeks and then be referred again which could mean 4-5 weeks altogether. You should get a referral now. E x ... View more

Hi Haraskram, I haven't had quite the same experience as you, but my tumour was a lump about the size of a kidney bean so pea sized is definitely something to be concerned about. Nobody can tell you for certain that is is not cancer just by feeling or looking, and they definitely can't tell you by a description over the phone so go straight to your GP today and get referred for the tests. They will not think you're paranoid, but even if they do, then don't let it bother you. These forums are full of stories of GPs who didn't think there was a problem and were proved wrong. You need to know what its going on so you can have peace of mind or get it treated if necessary. So go and get it checked and come back on here and let us know what happens. E xx ... View more

Hi Emma, What a dilemma! The GP isn't qualified to tell you that it is nothing to worry about. The only way to know for sure is to go for the scans and tests. I think you need to find out the name of the consultant that she is referring you to and then you can call their secretary at the hospital and explain your circumstances. In my case, it wasn't within the 2 week rule as my GP (wrongly) didn't think it was serious so I called the hospital direct and got an appointment arranged over the phone. My GP surgery receptionist told me who the referral letter had been sent to. If your holiday is within this country, would you be able to get back home for a day to go to the appointment? In terms of not enjoying the holiday, if you know when the appointment is and you know you can get back for it, then being away and having fun with your kids would be the best way to take your mind off it. Good luck! E xx ... View more

Oh Tree, I'm so sorry to hear that you're faced with even more gruelling treatment. I didn't have chemo myself so I can't say first hand what kind of care you might need, but I wanted to say that I think you are maybe underestimating just how much other people will do for you when you need help. You sound like the kind of person that wouldn't hesitate to help others and you have been used to being strong and being the carer so it is very hard to allow yourself to be the dependent one. My children were 17 and 18 when I was dx and they have both stepped up to do what was needed to keep the household running smoothly. My 17 year old son even took my clean pyjamas and underwear with him to college to bring to the hospital for me in his free period and then he took away things to washed as well. Kids are resilient and resourceful and it is good for them to have a bit of responsibility. I bet yours are well brought up, having a Mum like you, and they will be only too glad to be able to help. Similarly, your friends are probably only too happy to do something for you. I think you need to stop worrying about being a burden and then talk to the people around you about what you might need and how they may be able to help. Think about how you would react if one of your friends was in a similar position and then trust others to be there for you. I'm sure others will be on soon with more specific advice on the chemo too. Take care and try not to worry. E xx ... View more

Hi Kbgood, Thank you for the update and well done for getting to this point and having your plan sorted. I believe you are doing the right thing and you'll have the support of all the ladies on here who've been there before you as there will always be things that you wish you'd asked or clarified at your appointments. The knowledge among this group is phenomenal and there will be nothing that you need to worry about on your own. Its also a great idea to try and fit in a holiday before the treatment starts as it will help to take your mind off it and set you up in the best frame of mind to cope with it all. All the best of luck and let us know how you're getting on. E xx ... View more

Hi kbgood, You keep saying that you feel well at the moment. I think that is true for most of us that had cancer diagnosed at an early stage. Mine was an invasive tumour that I felt as a lump and it couldn't be seen on the mammogram. I felt absolutely fit and healthy, but if left untreated, it would have spread. There are different grades of DCIS and so have you asked about what grade yours is? I'm sure they wouldn't be recommending WLE if it was low grade. Keep asking the questions. At the end of the day, it is your body and your decision, but they do have a lot of experience and are acting in your best interests. Often, the stories you have read about insufficient margins and further surgery are because they don't know exactly what they're dealing with until they get in and remove it. It could turn out to be worse than it appears at the moment and then you would be glad that you let them go ahead. E xx ... View more