Breast Cancer Now Forum

Hello again CureDars, The pain from the biopsies sounds like it is really worrying you.   They would have perhaps also inserted a titanian clip to mark the area.  Why  not ring your breast care unit and talk with them about it to put your mind at rest.  They will be used to the various reactions that people may have and what may be considered normal or not.   I definitely remember having a bruised boob for a while and it was a little sore. It made me quite sensitive to that area and I found it dfficult to distract myself from it at times as it was a constant visual and sensory reminder of my situation.   Sorry to hear that your husband has been through the wars too,. Great that he is in remission. Best wishes for your scan results and appointment on Thursday.. Be good to yourself, Chick 🐣 ... View more

Hello Nanna J,    If it helps just say to people  that you are having a Review Appointment with Oncology in October where you will discussing  how you have been getting on with things.  I think I read somewhere that your cancer was oestrogen positive, so good time to review any hormone therapy if you are taking it and how you are managing it.  I am assuming that the appointment is with the Oncologist who oversaw your Chemo/hormone treatment rather than the Radiology side (unless yours was both a Medical and Clinical Oncologist).  You may want to prepare a list of any questions that you wished you had asked before.  If you are on aromatase inhibitor therapy, you may wish to ask if a DEXA scan to check bone density will be undertaken or if you have had one already, you may want to ask who arranges a review one (I think it is usually recommended about 2 years after the initial one).   Good advice from Jaybro about the Moving Forward booklet and course.  Here is the link to the BCC page with all the information and links regarding post treatment   https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/living-beyond-breast-cancer    It can be quite difficult sometimes after finishing the more active type treatments when you have had regular appointments, tests and checks and then ........ nothing and you are just left to get on with it.  It can be quite challenging emotionally as well as physically.    The type and occurrence of formal medical reviews and checks may depend upon the area where you are in the UK.  For example, NICE or SIGN guidelines don't need to be adhered to!  For example, there may be mammograms every year,or in some places every 2 years, for 5 years and then back to the routine every 3 years.  There may be a physical appointment every year with the breast clinic for 5 years or beyond as well as to phone the breast care nurses if concerned outwith this time,  or no physical appointment but just to ring the breast care unit if you are concerned and to take it from there.  It can be a much more speedier response ringing the breast clinic directly with any concerns than going through the GP appointment system. There may be no further input or review with Oncology or there may be formal review with an Oncologist and none with the breast clinic.  Of course, it is also important we continue to review ourselves and be alert to any symptoms.  Some breast clinics arrange an appointment with a nurse at the end of active treatment to go through self examination, other symptoms to look out for and lifestyle.    If you want to know how it works in your area, I would advise you ring the breast care nurses and ask how you will be followed up and reviewed, who you should ring if you have concerns, when are you due your review mammogram, what to look out for if you are not sure  etc.   Regards to you Nanna J Chick x   ... View more

Hello Kas,   You seem to write a number of posts  citing research or other advice regarding diet and nutrition.  I am interested in hearing your personal journey on such matters.  For example,  the lifestyle and diet changes you have made if any,  and how you feel that this has helped you in terms of cancer and any treatments that you have undertaken.  Of course it is up to you but it may be helpful  when diet seems such a confusing hot potato, especially for oestrogen receptive cancer.  Apologies if you have already posted about your personal journey and I  have carelessly missed it. Perhaps you can supply the link to any post/posts.   Best Wishes to you, Chick x ... View more

Hello CureDars,   Sorry to hear about your diagnosis and that you find yourself here.  My breast cancer was not TN  but  I did not want to bypass your Post without saying hello.  Hopefully someone with more direct experience will respond to you as well.    Sorry to hear that you are still feeling the effects of the biopsies.  Really hope the pain has reduced.  If you are suffering with nausea from the pain relief, perhaps try with food or discuss with a pharmacist or GP for the best alternative if necessary.  Codeine type meds can be effective but they can also play havoc with your digestive system and especially leave you with constipation as well.   I would not be surprised at feeling so "ghastly before chemo".  You have been through a lot already which can take its emotional and physical toll, and you are still waiting for some results and no doubt a definite treatment plan.  Is it definite that you are having chemo?  I went through chemo too with its ups and downs so to speak.  In my situation (triple positive), I  just saw it as a necessary part  to get through to  give me the best possible chance afterwards.    We all need time to process what is happening and to come to terms with it.  It is a lot to go through especially when you are first hit with it and you are playing the waiting game with tests and results.  A lot of people report feeling better once they have all the diagnostic results and the treatment plan is in place. For various reasons, it can be difficult to share things with family and friends at times, or when you are living on your own.  I hope you have people available to support you in whatever way you wish.    Depending upon your needs, it may also be useful for you to find out what is available in your area such as a Cancer Support Service like Maggies or similar. There are also  lots of sections on the forum where you can receive and give  support, as well as making use of the free Breast Cancer Care (BCC) helpline, the Services offered e.g the  Someone like me Service which will try and put you directly in touch with someone who has walked your path so to speak, the mass of information booklets available from the main BCC site etc.   Best Wishes to you, Chick x     ... View more

Hello SJ,   That is good that the cancer seems small.  It is good that you were being so vigilant and noticed it.  By coincidence, I also found mine by self examination, although it was like it came out of nowhere considering I use to have a frequent feel.  Yes I had chemo first because it was HER2/grade 3, but also because being relatively small chested they thought it may shrink so lumpectomy would then be a definite option.  Well the chemo did it's job but to cut a long story short, I still ended up with a mastectomy.  On the pathology report it was classed as a complete pathological response meaning no sign of cancerous tissue detected so I could not really ask for more from the chemo.  I think that is one advantage of having it first in that you can see if it is having an effect.  But there are pros and cons to all things and we need to have what is best for our individual circumstances.   I also kept things relatively close to my chest (oh dear - now there's an unintentional pun).  Even when surrounded by people it can still feel like a lonely journey.  Most family were not informed until the day before I was due to have surgery about 8 months after diagnosis!!  I did make use of BCC phone support, Samaritans, etc.  I found it easier to offload to people I did not know in the sense that it was "burden" free and I could be more open when I was having an emotional meltdown, which I needed to have now and again.  I  think I would have been in a less  healthy place if I did not have those outlets to dip into as needed as well as a couple of close people who were aware.     How lovely that you are planning a day out with your girls tomorrow and I hope you all have a great time doing things you enjoy.    Best Wishes to you, Chick x           ... View more

Hello SJ,   So sorry that it was bad news for you and that you are having to face this for a second time.  It must be such a lot to take in and get your head around again.  Must have been difficult for your daughter too so well done to her for being there with you.    I hope that the genetic testing will not take too long so that you know which way surgery will go  and also the potential implications for your daughters.  I really hope the scan appointments are arranged speedily and you can get on with treatment.  Have they suggested chemo first by any chance?  I was triple positive as well so all thrown at it so to speak so I can understand a little bit.   Well as you can see all the various sections on the Forum and all the support available from Breast Cancer Care for you to use if and when you need.   Best Wishes to you SJ, Chick x     ... View more

Hello Humbug, Have you had your appointment yet?  I really hope so and that everything is ok. If not, then I hope it is soon so that you can get to the bottom of things.  The waiting can be quite torturous so I hope you are managing to switch off a little bit at least. Take care and best wishes, Chick 🐣 x   ... View more

Hello Paulac, Sorry to hear you have had such a rough time.  Hope you are feeling a bit better.  Have you found that things have improved since stopping Tamoxifen?  I remember having a dilemma about taking Anastrazole.  I eventually gave it a go and have been on it now for just over 2 years.  I have had some side effects but nothing that I have not been able to sort out  so I will continue to take for now.     Hysterectomy  does not always include ovary removal. However, even if you have had your ovaries removed  or ovarian oestrogen producing function has been reduced by natural or chemically induced menopause, our bodies can still make oestrogen although it will be in much reduced quantities.  This is done by the action of aromatase converting other substances to oestrogen.  Hence people may continue to take tamoxifen or an aromatase inhibitor (AI) such as letrozole to reduce risk of  oestrogen receptive cancer recurrence.     Tamoxifen aims to stop circulating oestrogen acting on any cancer cells. Aromotase Inbitors, do as their name  states and inhibit the production of aromotase so that the conversion to oestrogen is very much reduced.  As far as I know, AIs can inhibit Aromotase by over 95%.  Aromotase inhibitors would only be offered to premenopausal women if they have had their ovaries removed or shutdown has been chemically induced by other medication.   Everyone reacts differently to different drugs so please do not let other people's experiences put you off.   I would advise that you make your own informed choice based on your personal situation.  You may wish to ask your Onco about any side effects and how these could be managed, especially regarding anxiety and depression, whether a review would take place if you give them a go,  whether  NHS Predict (a tool you and med staff can use in ascertaining possible effect of treatments on survival) indicates a  benefit in your situation,  and how receptive your cancer was to oestrogen and what this may mean for you (usually indicated by a score of ER 1 to 8. The higher the number, the higher the receptivity to oestrogen).   Whether a person chooses to take the medication is up to them.  Some people have awful side effects whichever drug they try and decide quality of life is more important, some people take and find side effects manageable,   a person could take it without fail and still end up with recurrence etc.  However, established research does indicate that there is less recurrence when treatment is undertaken.  Unfortunately no one can really give anyone an individual concrete guarantees so it is all still a bit of a lottery.   If you do choose not to take, you may want to consider doing what you can to reduce odds of recurrence via natural means such as maintaining  healthy weight, diet and exercise.  There are substances/products out there that claim oestrogen reduction but commenting on them is well out of my scope.  I would advise approaching with caution.   Hope the above has been of some use in your deliberations.  What is important is that you come to a decision that you can be comfortable with. Best Wishes, Chick  x   ... View more

Hello Janie,  Triple positive here too and similar treatment to you.  Yes we need to get to know our mastectomy scars and other areas so we know what is normal for us individually after the surgery.  It took me quite a while to touch and feel the areas afterwards as well.   I still feel quite tight at times and it is two years on but it is a lot better than it used to be.      I would advise that you contact the hospital breast care Unit/nurses and discuss with them/arrange appointment to get any worrisome areas checked out.    Last year when I felt a couple of areas I was unsure about,  I just got in touch with the hospital and a speedy appointment was arranged.  I ended up going through the trauma of ultrasound and a fine needle aspiration to be informed my lump was a small chronic seroma and the area was scar tissue.  I am glad I went and got it checked out.   Best wishes to you, and hope all goes well with the recon,  Regards,  Chick 🐣 x ... View more

Hello SJ,  All the best for your appointment today 🤗   Chick 🐣 x         ... View more

Hello SJ,  That is great that your daughter wants to, and is coming with you.  A lot for her to take in as well, I am sure you will look after each other.  Sincere best wishes to you all,  Chick 🐥 x ... View more

Hello SJ,   I was so hoping that you would  have  had  your results by now.  Just try and take it one step at a time and deal with what you know at this time.  I am really not sure if  they would have told you over the phone if the biopsies were benign; even benign situations need a detailed explanation and treatment at times so I would not jump to any final conclusion based on that.  Did you ask the nurse for any details during the call?    If it is bad news then you will deal with it because you have to for the sake of yourself and your girls.  We all have to be vigilant about these things and not bury our heads in the sand which is exactly what you have done and are doing in facing it head on and getting it checked out.    Try and keep hold of the good thoughts like the positive results of your recent bone scan.  I can empathise with you regarding going through the recurrence nightmare. I ended up having nuclear bone scan to check for recurrence last May after chronic issues with hip and leg.  Fortunately all clear at the time but the waiting for the scan and results was really pants..  Then  I was also  checked again at this time last year, two years after initial diagnosis and ended up having US, and fine needle job again.  It was like deja vu....Thankfully I got the results during the appointment  that all  was clear and my lump is a small chronic seroma and the other suspect bits were damaged tissue.   Of course I had prepared myself for the  worse in both situations with all scenarios covered.  That is just me and how I deal with things in an almost ambiguous self protective manner i.e. if it's bad news then it won't be that great a shock!!   You can obviously come on here and talk about things/share your worries or use the BCC support as stated in my response below.  However, is there anyone you can share your concerns with directly like a close family member or trusted friend.  It is not the greatest time to be alone.  Is there anyone who could attend the appointment with you?    There is a forum member called Lady Bowler and she always used to attach a picture of a pair of gigantic knickers when responding to people worrying about results appointment etc.  It wasn't to say to people that they should be more mature (the usual meaning of "put on your big girl's pants") but more that there were lots on room in them so that all the other forum members could fit in to support the person at the time.  So when Thursday comes, just remember that and visualise the support from myself and others in spirit. Sending Positive Vibes, Chick x         ... View more

Hello SJ71,  Hopefully someone will come along who has teenage children and can give better advice.    So sorry to hear about your situation and that you find yourself in the nightmare waiting situation again. I hope you have your results now and that these were benign.   Breast Cancer Care have a number of booklets advising about discussing situations with children, family and friends.  It also gives indications about what the responses may be. Being angry and not talking would appear to be a recognised response.  I have attached a link which I hope is of help to you.  https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/talking-children-about-breast-cancer. You may also find it useful to contact the Breast Cancer Care helpline and ask about the Someone Like Me Service.  If you have a Cancer Support Centre in your area like Maggies or similar then perhaps you could drop in there support too.  It is a lot to be coping with on your own.  Best Wishes to you and your girls,  Chick 🐥 x P. S. Personally, my opinion is that I would give any consultant a dressing down for calling any cancer a "good" cancer, even though I know what they probably meant by it! 😎   ... View more

Hello Annie,    Good point. I really do agree with you regarding physical activity/the impact of exercise.  They do say exercise can impact on mental health/brain chemicals although I don't think they are totally clear on the exact interplay just yet.   When I went through clinical depression (or mental torture as I call it, and not BC related) some years ago,  I refused medication. I  looked into other ways of managing, including physical activity.  That is when I also joined a gym, got into resistance training, back into swimming etc.  I felt it really helped.  It gave me an outlet for anxiety build up, routine, a focus, a sense of achievement, social interaction and new experiences.  Very economical considering I used the facilities 5 to 6 times a week. It took me 6 months to feel the clouds lifting.    I cannot do now what I used to do before cancer treatment but I still plod on and do what I can. I might not be able to run but my biceps and triceps are pretty nifty for a woman in her late 50s..... 💪 Best wishes to you Annie and everyone else,  Chick 🐥 x ... View more

Hello Naomi,  I do not meet the specific demographics for this section so hopefully someone more suitable, so to speak, will respond.   So sorry to hear about your diagnosis.  Hope your treatment is going as well as it can be.   It is a shame if you feel that you cannot talk to your partner and family about this.   Perhaps in time you may feel more able to do this.  You would need to let someone know that you have made formal arrangements.    I just wanted to say that in my opinion,  this is a very responsible,  considerate and practical thing to do.  I did similar nearly 30 years ago after a health scare (not cancer).  I did not purchase a funeral plan but have always ensured the finances are available for any send off as well as writing a will.  I also informed my named executor where all current relevant information would be stored so that family did not have to search through things/work out or remember who to inform and what to cancel.  Mind you as I have gone on quite a bit longer than I originally thought (!!), I review my will every so often just to ensure no major changes are needed.     Take care of yourself Naomi,  Chick 🐣 x ... View more

Hello highball,  Hope someone comes along who can be more helpful.  I am not in your position.  I have only been taking Anastrazole for just over 2 years.  It is good to hear about a positive experience on the drug...... And a very long one too!  I have attached an article for your interest.  Although it is not specifically about being on Anastrazole for over 10 years,  there is a suggestion of extending treatment/discussion of 15 year treatment.   https://www.bbc.co.uk/news/uk-36455719   It is a bit concerning that no one has checked how long you have been taking the drug/have not reviewed it with you.   I suppose we also have to be more responsible for and rely on ourselves as well.  I can understand your reticence not to rock the boat so to speak.  It may feel like you are cutting away your safety net.   However,  it may be worth you checking, either via your own research,/getting a general check up/via other means to ascertain whether continuing the drug may be increasing the odds of  high risk events occurring such as effect on cholesterol,  cardiovascular system, bone mineral density (although the Zometa should assist with that.).    Take care,  Chick 🐣 x       https://www.bbc.co.uk/news/uk-36455719 ... View more

Hello Wonky 😁   Absolutely agree with you..... New Normal... Still adjusting and still in bereavement for aspects of my Old Normal three years after diagnosis.  Not saying you can't get on with things and have the grateful ingratitude of still being here etc but I can not think of one aspect of my life that it has not affected and that I have had to adapt.  I don't go round with head in my hands moaning woe is me,  but every now and again I do need an emotional release which I consider healthy and dare I say it.... Normal.    I once saw an article by someone who had finished treatment for primary breast cancer and she was saying that she was glad she had the experience of cancer so she could now help others.   I will try my best to use my experience in a positive way but feel I really could have done without it.  Take care of yourself Wonky,  Chick 🐣 x ... View more

Hello Ruthie,  I have not experienced this but just wanted to acknowledge the dilemma for you.  I hope someone comes along who has more knowledge and /or direct experience.   You may want to consider the "someone like me" Service or have a chat with the nurses.    I so hate it when we are asked to decide things if we do not have adequate info.   So I hope they have given you the appropriate info listed in a Pros and Cons style/easily digestible format.   I think there have been trials on this (AMOROS but my memory plays tricks.... Of course I blame it on the hormone treatment ) and a number of meta-analyses so I am sure they could give you a helpful summary if not already done.  I think the main trials gave the edge to the radiotherapy treatment with reduced cases of Lymphoedema being a positive as well as reduced infection etc.  However, increased radiotherapy carries it's own risks.  I suppose if it was me I would want to know the quantified risks and benefits of each treatment.   Best wishes to you Ruthie and I hope you reach a decision you are comfortable with,  Chick 🐣 x ... View more

Hello Kate,  Sorry to hear you are a rough time.  I am not on Letrozole (Anasty for me!!) and I am not experiencing depression so I cannot answer your specific question.    However,  whichever hormone treatment you are on,  depression (in the clinical sense rather than just feeling a bit fed up etc) is a recognised possible common side effect. If you check the Patient Information Leaflet (PIL) , it should be stated.  It is not surprising that it can be a side effect of oestrogen depletion due to oestrogen's interplay with brain chemicals.   It is not unusual for some women to experience depression on approach,  during and after the menopause, never mind hormone therapy to kick the boot in even more.    Of course,  depression can occur irrespective of hormone treatment.  Cancer diagnosis,  treatment and living with the aftermath can all takes its toll at some stage or another, never mind all the other factors in life that can kick it off.    If you find the side effects are concerning you,  perhaps discuss with breast care nurse/oncologist/gp and review the situation and/or alternatives with them before throwing in the towel so to speak.  They may indeed suggest a break to try and ascertain causation.  A number of people find taking an appropriate antidepressant suitable for them if the situation warrants it.  This obviously may not be everyone's cup of tea.  Some people find having a short break useful and then restarting or trying a different treatment.  Some people find adapting their lifestyle through diet,  activity and stress reduction can have positive effects.  And some people find stopping hormone treatment to be the right choice for them.   Whatever you decide to do,  I would just advise making an informed choice based on your individual risks and circumstances.   Wishing you well, Chick 🐣 x     ... View more

Hello again Jo,  Yes it is uncommon in your age group, but you are not alone.  It must be such a scary time for you at the moment.  I hope you have got appropriate support.  There is a section for younger women on this forum called  Younger women and families. Also don't hesitate to contact the Breast Cancer Care site and find out about the "someone like me Service" that is available.  I think there is a very active facebook site for younger women with breast cancer.  Returning to the Staging question,  my staging was done by the TMN system rather than the 1,2,3,4 system.  On saying that, I could still ascertain it was classed as stage 2.  I think when most people think of staging,  they may just think of the number system so maybe it is the number type system that is being less used.  However if medics do not use any type of staging at the moment then that would not really make sense at all for anyone.  So if you really wanted more details in addition to grade,  then I suppose you could ask about the size,  location and other details such as type of cancer, hormone and other status.    Anyway Jo, I really wish you all the best with your treatment.  There are Chemo groups in the Going Through Treatment section which you can join and share with others going through treatment at the same time as well as well lots of other resources such as the free phone support and information booklets etc.  Take care Jo,  Chick 🐣 x ... View more