Breast Cancer Now Forum

Ms Merton · ‎21-01-2018

Hello lovely - sorry to hear you are so stressed out, understandably so. This part of the process is definitely the most distressing time. Lack of control is a big issue. You are correct that usually with multi-focal BC they prefer to do a mastectomy. I had 3 lumps in a patch of DCIS and originally had a lumpectomy, but a few months later had to have a mastectomy when they discovered another DCIS patch (not a recurrence, just a patch they didn’t spot the first time, ahem). I have had a DIEP reconstruction, which is the operation you want I think? My plastic surgeon was very hot on the BMI issue. If you saw me you probably would not describe me as fat but because i weigh 72 kg instead of 64 kg my BMI is about 28. Even this really concerned him. You have to understand that it is a hardcore operation and can take up to 10 hours. Therefore they have to weigh up the risks of giving someone that much anaesthetic and they are v cautious. Also bear in mind that DIEP is rarely one operation. My “foob” is not the right shape and my breasts don’t match at all. I have to go back to have the foob re-shaped and the other breast lifted and reduced to match. This is not a complaint but you need to know what you are letting yourself in for. An implant recon is a much simpler operation, and i think i would have had that given a choice but they wouldn’t give me an implant because i also needed radio! Are they now saying you only need a lumpectomy? Obviously that’s a much easier operation to recover from so that is why they try to avoid mx where possible. But if you have concerns, you can insist they explain to you why lumpectomy is being recommended and you can ask to record the consultation on your phone (you must get consent to make a recording) or for written advice so you can consider it carefully. Tamoxifen - don’t be scared of it. You can start taking it before surgery (I did) but you need to stop at least a week, maybe two weeks, beforehand. You can start taking it again once you are mobile after surgery. You won’t know what side effects it has for you until you take it yourself. There are various medications that can be prescribed that lessen side effects such as hot flushes. Also many people have success managing side effects using complementary therapies such as acupuncture and relaxation techniques (yoga, mindfulness, tai chi etc). So even if you have some issues, it might be that with the right medical advice and other help it is in fact all manageable for you. If you try taking it, then you have the option to stop if you decide that you can’t cope. But if you don’t take it you’ll never know and you won’t have given yourself the chance to benefit from the protection it gives. I was very upset indeed when first diagnosed and completely lost it when told i had to have the mx but now really I feel fine again, even with mis-matching breasts, a huge tummy scar, mild Lymphoedema and a slightly scary prognosis. You’re not self-pitying at all. All your reactions are completely normal and commonplace for people going through this ****. You will feel good again, I promise you, but it will take a little while. I found counselling enormously helpful. It’s also great to meet others at a support group. Is there a cancer support centre such as The Haven or Maggies near you - if so I highly recommend checking it out. Hang in there. We’re all here for you. Sending you all best wishes.

Ms Merton · ‎10-01-2018

Hi Andi - i hope you are feeling ok now following the surgery. As so many ladies have noted, everyone’s experience is different and just because one person does or does not get side effects with a particular drug (tamoxifen, letrozole, chemo) it doesn’t indicate how you will fare. I understand that i might still get secondary cancer even though i am taking the tamoxifen but statistically it is reducing my chances. To see how it might benefit you statistically, you can use the Predict website run by the NHS (predict.nhs.uk) which is suitable for use by patients. You put in a few details about your diagnosis and it shows you the statistical benefit to you of the hormone treatment (and also chemo). You can then discuss this with your oncologist when you see her. Unfortunately grade 3 does increase your risk of recurrence compared with ladies with a lower grade tumour but how hormonally sensitive your cancer is will also be relevant to your decision. It sounds like you have an amazing healthy lifestyle - i wish mine was that good. I see you take plenty of exercise, which is what everyone at the hospital has told me matters most. Some people find complementary treatments (e.g. acupuncture, reflexology, meditation) useful in controlling any medication side effects. Your oncologist can also prescribe certain medications to reduce side effects if required. Also be aware that many people find the side effects reduce quite a bit after a few months. I really wouldn’t abandon the idea of taking hormonal treatments without trying them first. Best wishes.

Ms Merton · ‎01-01-2018

Hi - you can use oil as soon as your scars are fully healed, usually about 4 weeks. If in doubt, ask your BCN to check them. Please be aware that Bio Oil contains mineral oil and is not a fully natural product. The complementary therapist at my cancer centre recommended using natural calendular oil or rose hip oil. She also advised me to massage the scars with dry hands and then apply oil afterwards. For anyone with raised/keloid scarring, the sticky silicone patches work best in my opinion - ask your BCN or pharmacist. Hope that helps.

Ms Merton · ‎19-12-2017

Hello Steele - sorry to hear you are continuing to have these problems. I would advise you to make a bit of a fuss about it as it is clearly adversely affecting you six months on from your operation. Can you get hold of your Breast Care Nurse? Or even your GP? I also wonder whether there is any support group near you where you could meet people who have gone through a similar experience - I think the helpline attached to this website can give you that sort of information. I have found meeting other ladies at a Moving On course invaluable. Wishing you all the best. Xx

Ms Merton · ‎11-12-2017

Hi - great to hear you are doing well. I have had some very mild swelling (hardly noticeable) in my hand and lower arm which has gone back down now with MLD massage and compression. Didn’t know you could get black - agree the flesh coloured ones are a strange colour. I am optimistic that what i have had is v mild and can be kept under control but i am a bit nervous now about flying so good to hear you didn’t have any problems. Great to hear you are really seizing the day and enjoying lots of lovely travel. X

Ms Merton · ‎09-12-2017

Hi Powdow - how is your arm now? Has the sleeve helped? Have you been able to fly to the US again without problems? Assume you wore the sleeve on the flight. I hope you’ve got it under control now.

Ms Merton · ‎25-11-2017

Dawn I’m v sorry to hear you are going through such a worrying and stressful time. If you have been short of breath since radio, I wonder if there is a chance that the radio has damaged your lungs slightly? Let us know what the doc says once you have your MRI. I tried to take the view when i had a PET scan recently that at least if it is bad news you know where you are and can start treating the problem (i was ok this time fortunately). Baz - what a great post. Such fantastic advice. I think we need to be honest about the risks we live with (whilst not overreacting) and get the most out of life while we can. Of course that is good advice for everyone, whether or not they have cancer, but our diagnosis does focus the mind. I have also found the Moving On course v helpful. Best wishes to you both. Xx

Ms Merton · ‎19-11-2017

Hi Sam - don’t panic. They test for what is fuelling your cancer in order to treat it in the most effective way. There is no point in giving Tamoxifen to a patient whose cancer is not fuelled by hormones. As I understand it, non-hormone positive patients often respond better to chemo than ER+ patients. They like to give hormone-negative patients chemo because it is a systemic treatment designed to target any stray cancer cells anywhere in your body. In ER+ patients the endocrine therapies such as Tamoxifen and Letrozole do that to some extent so ER+ may be less likely to need chemo, depending on other factors. Your cancer is low grade (1/2) - that is really good news as that means your cancer is less aggressive, growing more slowly and is less likely to spread. Do tell your oncology team about your concerns and anxiety. Hopefully they can give you more information about what treatment is planned for you and why. Best of luck.

Ms Merton · ‎19-11-2017

Sue I am sorry to hear that you feel you are struggling. What operation are you having next - DIEP? If you have any questions about this, I can tell you my experience. More generally, is there a cancer support centre or group near you or at your hospital? Maggies or The Haven for example. Maybe you can ask your BCN? Do let your BCN know how you feel. I do think this disease is particularly hard for single people practically and emotionally. Maybe it would help to meet other ladies in a similar position? Could you bring yourself to try something new that might give you a focus other than the BC - yoga, tai chi, aqua aerobics, cake-making, book club, WI, gardening club??? I know it feels very hard at the moment because your treatment is ongoing. On the other hand, the positive side of having cancer (!!!) is that you really understand that you have to get as much out of every day as you can. Hoping you feel better soon. Xx

Ms Merton · ‎30-10-2017

Very good - I’m pleased to hear you have your appointment now. Were you given some Physiotherapy exercises to do at home post-op? If not, ask about that too. If your scar is healed, you should massage it firmly every day and then apply bio oil, or calendular oil or rose hip oil (or any oil with lots of vit E - even olive oil or coconut oil will do), but check with your surgeon first. My breast surgeon also advised me to massage my ‘foob’ to make it softer. You can ask your surgeon about this when you see him. Best of luck. Xx

Ms Merton · ‎28-10-2017

Dear Gabii - i agree with all the other ladies on this thread. Healthy lifestyle changes will improve your chances and make you feel better. Using complementary therapies may help you cope better. These are all good things. But none of these things can actually stop your cancer coming back. Tamoxifen can stop your cancer coming back. That’s the difference, and anyone who says otherwise is misguided, mistaken or lying. Jane Plant famously advocated a dairy-free diet for BC sufferers to avoid recurrence but she herself also took Letrozole! It’s a case of as well as, not instead of. Please do discuss with your doctor what medications, lifestyle changes or complementary approaches might help you to live with any side effects better. I do hope you feel better soon. Xx

Ms Merton · ‎28-10-2017

No - you should def have a follow-up appointment! For example, you may need more fluid draining from your abdomen (takes a few minutes using a needle - no biggie). Maybe you have got lost in the system? Can you phone your surgeon’s PA on Monday and ask what’s happening? Failing which, call your BCN and make a lot of fuss. That said, unfortunately it is painful/uncomfortable for quite a while. Hope you feel better soon. Xx

Ms Merton · ‎28-10-2017

Hello - like Tralala i was also stage 3 (grade 2) and have completed treatment with no evidence of active disease currently. I am also 47. You are still low risk because your tumour is grade 1 and it looks like you only have one node affected. Also you are hormone receptor positive which really improves your chances. Have you seen the NHS’s Predict website which will allow you to input your diagnosis details and get current statistics for survival rates - bearing in mind that these are actually behind the curve because treatments are improving all the time. That said, we do all feel anxious of course. I understand completely how you feel. Some people find anti-anxiety medication helpful at this time. I would strongly recommend the integrative oncology approach, that is using complementary therapies, exercise and healthy eating to aid you through treatment and recovery (as well as, not instead of, conventional treatments of course). I found yoga really helpful. Some people like meditation or tai chi. Reflexology is very deeply relaxing and mood-balancing. Some people like acupuncture. I have also had counselling which helped. Is there a Breast Cancer Haven, Maggies Cancer Centre or other support centre near you? If you call the helpline here on BCC they can give you that information. These centres offer support groups and many complementary therapies and activities. Don’t worry about radiotherapy - for the vast majority of people it’s absolutely no big deal and only lasts 3 weeks. Chemo is a bit pants, but they have good drugs now for combatting side effects. I mainly felt jet lagged with poor concentration and low stamina, but I was never sick and was always up and about doing normal things. I hope your surgery is successful. Can you speak to your medical team about whether it might benefit you to have chemo first and then completion surgery (which is increasingly common)? Finally, I feel happier now than before I had BC (even with a mx, full lymph node clearance, scars etc) because i have found more balance in my life. This experience will change you, but not necessarily in a bad way. Sending you lots of happy wishes. Xx

Ms Merton · ‎25-10-2017

Rachel - that is a top tip!!! I wish I’d thought of that when i was first diagnosed. Incidentally i saw the physio this week and she made me use my phone to video her doing the exercises she wants me to do at home - the modern world! Take care xx

Ms Merton · ‎12-10-2017

Hello - i have had a mastectomy with a DIEP reconstruction (still needs more work!). So i have a large abdomen scar too. The whole cancer journey is a grieving process and losing a body part is also a grieving process. You will go through stages of denial, anger, sadness, maybe even depression. If you think about it, it’s a completely normal reaction. People who haven’t had BC cannot understand, and maybe we shouldn’t expect them to. But you are strong and will get through this. Unbelievably, in some ways i feel better about myself now than before i had a lot of life-changing and “disfiguring” surgery. Weird but true. But it takes a while to get there. I can only say that I have found the following helpful: counselling, yoga (or try meditation), walking, reflexology, Zumba, DVD box sets, buying shoes. Lots of shoes. Find what works for you, but be open to trying new things. Don’t be afraid to lean on your friends and family for some emotional support at this time. I promise you however **** you feel now, it will get better. In the meantime we are all here to support you and send you best wishes. Xx

Ms Merton · ‎12-10-2017

Hello - i can give you the answer i was given but you might not like it! It’s not (entirely) about money because this is what my private oncologist told me. I am stage 3a and have recently finished treatment apart from tamoxifen. I asked whether they would be monitoring me for recurrence/spread. Answer no: they will mammogram my unaffected breast and examine me physically but unless i have symptoms nothing else. I asked why not. My consultant told me that research studies show that identifying secondary breast cancer before the patient experiences symptoms has no effect on survival time. How long you live if you progress to Stage 4 is dependent on how well you respond to the drugs, not how quickly they find it. Although he said obviously it is better to pick it up sooner rather than later so report any potential symptoms. Therefore they normally advise that the risks and stress caused by regular scans is not justified by the potential benefits. Personally, I don’t find that answer very reassuring and would consider paying for additional private scans but that is the advice of an excellent oncologist at a leading teaching hospital. Wishing you all the best. Take care. Xx

Ms Merton · ‎08-10-2017

Hi Carole - we haven’t corresponded before but I just wanted to say that your post touched me. I feel your upset and frustration. Entirely understandable. Hang in there. I hope your chemo journey is nearing its end - but there is light on the other side. The BCC community will be thinking of you and sending you its collective love. Best wishes xx

Ms Merton · ‎27-09-2017

I'm so sorry to hear your story Daisy. My condolences. Thank you so much for sharing this information which shows the risks of not having ANC even if you have had chemo. I had a number of live tumours in my lymph nodes removed after chemo which had not shown up on scans and not been cleared by the chemo. So thankful now I had the surgery, although we all hope they will find better solutions in due course because of the lymphoedema risks.

Ms Merton · ‎22-09-2017

This is the standard protocol in the UK (both NHS and private): if node metastasis can be detected using scans and biopsies prior to surgery, then a full axillary node clearance will be recommended and a sentinel node biopsy is irrelevant. If pre-op scans do not indicate any lymph node involvement, then a sentinel node biopsy will be performed at the time of the lumpectomy/mx. In some hospitals, the sentinel nodes will be checked while you are under anaesthetic and if significant metastasis is found, then a ANC will be performed there and then. In other hospitals, you may have to go back for an ANC later. If the sentinel node biopsy shows only tiny amounts of lymph node involvement (micro-metastasis) in one node only, you may be offered radio as an alternative to ANC. If you have lymph node involvement, you will also need to have chemo. I was initially resistant to having an ANC (I had positive lymph nodes identified pre-op) but I am now very glad I did because they removed more positive nodes further up the chain. Hope that helps.

Ms Merton · ‎07-09-2017

Hi Angela - is there a support group in your area you could join? Breast Cancer Haven run groups for under 45s. The nurses on this site or Macmillan could tell you what else is available in your area. Personally I think anxiety is a perfectly normal reaction to having cancer - we all have to try to move forward with the Sword of Damocles hanging over our head. It's tough. Hard for people who don't have it to understand. Maybe when you were going through treatment you were too "busy" coping with that to think about the long-term risks but now you have time to focus on them you are feeling more anxious. Plus both chemo and tamoxifen can cause chemically-induced anxiety for which some people find anti-depressants helpful. I would also suggest yoga, meditation, complementary therapies such as reflexology, maybe hypnotherapy, counselling - see what feels right for you. The "upside" to cancer is that it makes you appreciate what you have and teaches you to make the most of every moment. Take care. Xx

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