Breast Cancer Now Forum

Hello - I had a v similar experience - 4 x EC plus 10 paclitaxel and after that they still removed another 2 lymph nodes with tumours and a further tumour in my axillary sac all seemingly unaffected by the chemo.  My Onc also said I'd had "a lot of chemo".  Ha.  Like you, this was the first time I began to think seriously that I am going to die of this disease. You realise the limitations of the treatments.  However, although I am a bit scared I am feeling very happy otherwise and focusing on getting on and enjoying my life now that 11 months of treatment has ended (apart from further "cosmetic" surgery later). Unexpectedly, I felt so much better after the operation (mx with recon, although it needs further work). I take it you will have radio as well after surgery given the spread within your breast. Or rather, make sure they give you radio too!!  It makes me very angry that your choices are being limited by waiting lists but on the other hand lots of surgeons won't do immediate recon anyway if you are having radio.  Although the mx is obviously upsetting, the feeling that the cancer has been cut out is very good! Sending you all my best wishes. Xx ... View more

I get that all the time "you look well" (slightly surprised tone of voice). Annoying isn't it? Along with "I really like your hair" (I now have short mousy chemo curls where previously I had long straight-ish blonde hair).  And the latest one is "have you got the all-clear now then?"  No, I still have stage 3 cancer, thanks for asking.  Ultimately people are trying to be encouraging, positive, supportive (as they see it) so I think we have to try to roll with the punches a bit.  I try to accept that they don't know why these comments are annoying or upsetting.  Worst thing was said to me by a colleague who had herself had BC a few years ago.  On hearing it had spread into my lymph nodes she said "I remember the day I was told it wasn't in my lymph nodes.  I cried with joy".  Yeah, cheers for sharing. Rosemarie, I hope you have someone who you can turn to on the hard days.  We are all here for you.  Sending you all best wishes.  Xx ... View more

Hello   What a nightmare re the re-excision. How stressful for you. I also had a lumpectomy which failed followed then by a mx.  I don't want to scare you but consider this - your team obviously couldn't see the extent of your DCIS from the scans (not uncommon) but that means you might have other patches of DCIS in your breast that they haven't identified. This is why extensive DCIS tends to indicate a mx is required (that's not a medical opinion, that's just my experience) - might be something to raise with your surgeon?  Of course, I do understand the dilemma that just another small shave might be enough .... could they give you another MRI to see what, if anything, shows up before deciding?    I have had a DIEP done.  It is a big op but really not nearly as bad as I feared. You will be in hospital for 1 week and then need to rest at home (not in bed though) for another week. After that you can begin doing things slowly but no chores or driving for at least 4-6 weeks and you will feel fully normal after about 3 months.    You will have a very long scar across your lower abdomen and that is the trade-off you have to be willing to make.  It is quite painful for the first week.  But you will have a breast which is your flesh and is warm and soft to touch. It will feel normal to you, although you will not have sensation in the breast itself.  You may have to have your good breast adjusted to match at a later date (also true if you have implant or any other recon). The good news about the DIEP is that although it is a bigger time commitment initially, when finished it should be permanent and maintenance free, whereas implants may require replacing in a few years time.  Friends I know who have had implant reconstruction also say it feels unnatural to them in that they are aware of having a foreign object instead of a natural breast. No doubt that lessens over time and it is a much simpler operation.  Just note you can't have an implant if you are having radio afterwards.     At the end of the day it depends how important it is to you to have a breast. Personally I wouldn't prioritise a 2 week holiday over a permanent breast reconstruction but quite rightly absolutely everyone feels differently about these things and prioritises accordingly. I would recommend the DIEP but you may prefer a simpler path. In any event I hope you find the option which suits you best. Good luck xxx ... View more

Hi Tigony - my rads team permits use of this product https://www.pitrok.co.uk/PitROK-The-Original.html It is a solid mineral stick that you apply to your wet skin after shower.  So far it has worked well for me. They also recommend Doublebase gel as a moisturiser (available from the pharmacy counter without prescription).  For hot flushes, I like the spray cans of mineral water.  Hope that helps.  xx ... View more

I understand you are upset.  Of course you are. I feel for you. But there is no need to be rude to other forum users. No need at all.  We are all in the same boat you know and for some of us it is leaking quite heavily.  ... View more

Agree - we need to feel like ourselves.  Some people are happy flat and others not. I have quite large breasts so would have found one large breast and one flat weird and inconvenient. I do have to have my real breast reduced slightly in due course to match the foob though. They def won't let you have an implant before rads.  For the DIEP or any other own-tissue recon (they can also use tissue from other areas sometimes) you would need a specialist plastic surgeon in addition to your cancer surgeon.  I am 47 and stage 3(a) - it's pants isn't it? But 11 months on from diagnosis I finally feel quite well and happy again, although still a bit scared about the future.  It is good news that your tumours have responded so well to chemo.  Good luck with the surgery.  Do feel free to pm me with any questions.  Lots of love, Susan xx ... View more

Hi Zena - it seems that some surgeons think you should have DIEP recon before rads and some after. I was told there is some risk that the "foob" will be damaged but then again delayed recon after rads has problems too.  I certainly know others who have had DIEP then rads. I am coping so far whereas I really couldn't have done a mx without recon.  I just hope the foob will be ok.  It is pink from rads now but have just finished and hope for the best.  The foob is great by the way - it's an amazing operation provided you can live with the tummy scar! An alternative might be to have an expander now and DIEP later?  I really, really didn't want the ANC.  However, even after 5 months chemo, 3 live tumours were found in my lymph nodes by the pathologist after surgery.  Knowing that now, I am so pleased I did have the ANC! I don't know how big any tumours need to be for the scan to see them?  Maybe a question to ask the consultant? It's such a tricky decision - I really empathise with your dilemma.  Best wishes, xxx  ... View more

Hi Annie - you're amazing by the way - does he not want to give you any taxanes or just not the standard 3 weekly Docetaxel?  Is the weekly Paclitaxel an option for you?  Xx ... View more

Hello Lesley - have you seen the NHS's Predict tool which enables you to put in basic details about your diagnosis and get statistics on the benefit for you of having chemo?  It's really easy to use.  Predict.nhs.org It might help in your discussions with the consultant.  Best wishes xx  ... View more

Hi Zena - could you have an immediate DIEP recon with your mx?  I did and have still had rads after.  Also had full ANC and got a lot of cording (painful) but it has all cleared up now 12 weeks later and mobility in my arm is more or less normal.  You need to do the exercises and get a referral to physio starting about 2-3 weeks after your op.  Take care.  Xxx ... View more

Andromeda - thanks for your kind words.  There is an organisation in your area called Wessex Cancer Trust (www.wessexcancer.org) which runs centres and support groups. Might be worth looking at?  Good plan to try the anti-depressants. I found chemo really messed up my mind and emotions so as well as the stress of the cancer you have been given a chemical imbalance in your brain by the treatment.  I actually wonder whether antidepressants should be routinely offered with chemo.  Do feel free to pm me anytime if you want to chat by email.  All the best. Xx   Riversidedawn - wow, you are inspirational.  I hope you get (and love) your DIEP.  Xx ... View more

Don't "dread" the tamoxifen - it makes SOME people emotional but we don't all react the same way. It hasn't adversely affected my mood (unlike chemo) so you may well have no problems.  Many people have no side effects at all.  If you do, your doctor can prescribe medication to deal with the side effects, including depression or anxiety if you do get these. I understand that research shows people often go through a period of feeling low at the end of active treatment whether or not they are taking tamoxifen - but it's temporary. I am so sorry you are trying to cope with the cancer and an abusive ex at the same time. That is unbelievably hard.  You are a strong person with extraordinary resilience.  I hope you are getting some good legal advice and keeping safe.  Are you getting some counselling too?  Wishing you joy, tranquility and freedom.  Xx ... View more

Hi Layla - no need to worry about the glue! Some surgeons prefer glue to dressings.  Having had both, I think glue is better. And you are actually less likely to get an infection with glue and can shower more easily - just don't soak it in the bath.  I had a mastectomy and tummy flap, all just glue with no dressings and it healed really well because no stitches. The glue gradually comes off after a week or two.  I also have 2 cats and really they are not an infection risk (even on chemo) as long as you wash your hands after handling them or litter tray.  I also started with a lumpectomy but the tumour turned out to be bigger than they could see on the MRI so I had to go back and have a mastectomy.  Some surgeons prefer to try a lumpectomy where possible because it has less long-term potential complications than a mastectomy.  Your daughter will get a pathology report a few weeks after the op.  If there is any doubt as to whether they have managed to cut it all out ("clear margins") they will either do a resection (cut another slice out) or a mastectomy. They will not leave her with any cancer cells in her breast!  And then she will also have radiotherapy to make double sure.   It is quite normal not to have a drain in so no need to worry about that either.  If your daughter gets any fluid build up (a seroma) it normally goes away by itself after a few weeks or they can drain it with a needle.   I promise you she will feel back to normal within a week.  But she shouldn't do housework for a few weeks and no heavy lifting for at least 6 weeks (check with consultant or breast care nurse) - I.e. don't pick the cats or kids up for a few weeks, no ironing, no hoovering etc!  Sending you and your family all my best wishes.  I wish your daughter a speedy recovery.  Xxx ... View more

Hello lovely - I am also stage 3 and it is a very scary place to be. It is hard sometimes not to have dark thoughts about the future.  I am super lucky to have an amazing supportive partner and sister and I fully realise what a massive difference that makes.  I am so sad for others going through the same thing without that support.  You sound like you are feeling very alone and need to find someone to talk to who understands what this feels like.  I don't know where you live - is there any support group at your hospital or the Haven or elsewhere locally you could join?  Can your GP refer you for counselling?  Maybe even some antidepressants? And better pain relief!  Or are there any other types of groups you could join where you could find support and friendship, even something like the WI or the Ramblers?!  Is there a CAB near you where you can get more guidance on what your benefits situation really entails? I have had a DIEP and it is an amazing operation.  You will have a lovely warm, squidgy, perky new breast. Yes, I totally believe you can and will find a new man who loves you for who you are and as you are. There are some great men out there, but it can take a while to find them.  Sending you lots of love.  Hang in there, we must all stick together.  Xxx ... View more

Hello Sandra - have you explained the level of your anxiety to your medical team?  They will routinely prescribe anti-anxiety and anti-depression medications to chemo patients as needed. I am quite hospital phobic and got really upset on the chemo unit so was prescribed Lorazepam (similar to Valium) to take if I needed it and sleeping pills for emergencies too (although I didn't take them). They also have a lot of medications which really control the side effects well for most people so make sure you are being given access to these, especially Emend (aprepitant) for nausea and Neulasta for white blood cell count.  For most people you just feel a bit under the weather (like jet lag or a hangover) but can carry on reasonably as normal.  Best of luck.  Xx ... View more

Judging by the traffic on this website, navy blue freckles are all the rage this year Lin! I'm hoping mine will fade a bit over time.  Either that or I get a bikini to match.  I asked whether I could get the dots lasered off but the radiographer said not to just in case they ever need to see where I was treated in future.  Maybe experiment with a dab of concealer? I think there is something de-humanising about being marked up in this way - you can feel a bit like a slab of meat during the radiotherapy process generally - and this is why it is more upsetting than you would logically expect.  Take care. Xx ... View more

That's such good news about your scan.  I also had a lot of wear and tear damage in my neck that I was blissfully unaware of. Glad you are starting chemo soon - you will be back to normal for Christmas. Do you know about the cold cap which you can wear to try to prevent hair loss?  Ask about that at pre-chemo appt if you want to try it. When you have the FEC you need to stay really well hydrated.  On the day drink plenty of water to flush it through your system.  You will pee red for 24 hours!  You will probably also need some laxatives as it can give you really bad constipation for a few days.  They can give you anti-nausea medications such as Domperidone and Emend (aprepitant). I took Emend and had virtually no nausea and was never sick.  I just felt a bit tired/down/jet lagged. Some hospitals and cancer centres have special yoga classes for patients, e.g. The Breast Cancer Haven in Fulham has classes. The great thing about yoga is you don't have to be any good at it to benefit from it - I am hopeless! I have found a yoga teacher who helps me work within my limitations. But I also have a yoga for breast cancer DVD I got from Amazon.  I want to try Tai Chi now! I am actually feeling really good at the moment, even with the radio.  It is just lovely to correspond with someone else who has a lot of lymph node involvement and knows what that feels like. Take care. Xxxx ... View more

Apologies to your husband for saying this, but in my view it would be deeply foolish to book a holiday abroad for 2 weeks after you finish chemo.  You will have a seriously suppressed immune system for at least 4-6 weeks afterwards. You need to be able to get to A&E immediately if necessary should you be unlucky enough to get an infection in the first few weeks following your last chemo treatment.  Plus you will be really tired and wiped out by that point. I would have thought 2 weeks in a lovely cottage in the UK somewhere near enough to a hospital just in case would be ideal.  So much less stressful for you. However, if your husband doesn't understand the issue, maybe the oncologist or BCN could explain to him why a big foreign holiday is a very bad idea. Why not book to go to the Carribean or somewhere similar at Christmas instead if that is affordable for you?  Best wishes for the rest of your treatment. Xxx ... View more

I would say it feels like having jet lag or a mild hangover. You get tired and out of breath quickly when exercising. I also had bad constipation with the EC. And hair loss despite using cold cap. But I was never sick and didn't even feel nauseous.  Broadly I could carry on as normal provided I limited the number of things I tried to do each day so I didn't get too tired. They will give you a 24 hour emergency phone number and probably some emergency  antibiotics as well.  I also had "chemo brain" - forgetful and lack of concentration - but at least that means you don't get too bored! Xx ... View more