Breast Cancer Care Forum

Hello Mai,  Thanks for this. Never heard of it before but it seems to have started in 2013? It is good the articles can be read without signing up.   However, for myself, I will give the personal plans a miss. Even though they say they anonimise data, my understanding is that a main purpose of theirs is to collect personal health data and possibly sell on to other parties for research etc.  If I have got this wrong, then let me know.   Other people may not mind the back scratching relationship.  As always, each to their own. Hope all is well with you,  Chick x 🐥  ... View more

Hello Raven,  I can understand your fears. We go through one thing and then another, worrying about and trying to dodge the side effects.  No one can give you a solid guarantee that you won't end up with any of the very rare side effects.   However the chances are small. Hopefully you got your teeth checked and any work needed to be done has been done.     As my earlier post in this section, I have found the infusions ok.  I am due my sixth and last for now in Jan. My hip and jaw are still intact at the moment.  Best Wishes,  Chick 🐥 X    ... View more

Hello SJ,    Very glad that you have a plan.  It is a lot to take in and it is a relatively long haul. All the different elements to think about is scary. Hence the mantra to be repeated.... One Step At a Time or even OSAT!! 🤗.    I went through the long course as well. I first went to breast clinic mid Sept 16 and diagnosed fully mid Oct. I started my treatment in mid Nov 16 and last herceptin was March 18 with my last planned Zometa Infusion being Jan 2020.  Treatment plans can change a little  as we go along as well.   Going through all this and another thing lands on your doorstep - ovarian cysts.  Are they just going to check them for the time being before diving in. I had a couple many years ago. After quite a time of watchfull waiting, they eventually disappeared.  Fingers crossed you don't need more procedures.    How lovely that your daughter is knitting hats.  I used the cold cap even though it did not stop me losing my hair. I got a wig but never wore it. It is still lying in its box unstyled.  I just wore ordinary hats and as it was winter, once I had my hat on it all looked very ordinary. I managed to retain some fringe for quite a few months even though I had the rest of my head shaved.  After my head shave I also used to wear a liner hat (sleep hat from Annabandana) under my other hats for warmth, to stop them slipping off and also for height. They were great for sleeping in as it could get a bit chilly!   Anyway SJ, did they give you a surgery date or do you have to meet the breast surgeon first to discuss?   Just wondering as well if you may be interested in Breast Cancer Now's Someone Like Me Service. They could try to match you up with someone who has children and has travelled a similar path to yours. You can ring the helpline to find out more.    As always SJ, best wishes to you and your girls,  Chick 🐥 x     ... View more

Hello SJ,  Hope your appointment goes well tomorrow and results are all in so you get a clearer indication of what is happening and when. Lots of 🤗 to you, Chick 🐥 x ... View more

Hello Helen,  Now that's what I call a result. Bleeding brill 🎉  Best Wishes,  Chick 🐥 x ... View more

Hello Helen,  All the best for your appointment tomorrow. Lots of 🤗 🤗  Best Wishes,  Chick 🐥 x ... View more

Hello again,   I can understand that  - it can be so difficult playing the "waiting game" so to speak.  And then you become hypersensitive to any ache or pain or whatever and your mind will start playing tricks and torturing you with possibilities for the future.   Give yourself Time Out and try and file your worries in a box for the time being as all you have to go on at the moment is that you have a breast abscess .   If searching for information online is just increasing your anxiety then stop searching!  Dr Google can not give you a definitive individual diagnosis one way or the other.    You will hopefully be having your scan soon so take it one step at a time.  Remember,  most lumps/bumps/issues turn out to be benign rather than malignant.   If there are any issues found, whether benign or otherwise,  then better to get them sorted early rather than leaving things. From what you have written In your initial post, it sounds like they are checking out  any issues in a timely way.   Take Care, Chick x ... View more

Hello again Lara,  Fantastic that you have managed Anasty well for 5 plus years.  I always think it is good to hear a positive side to this medication. Should I last 5 years with no obvious great detrimental effects, I think I would prefer to continue, at least for a couple of years and then review.  Take Care,  Chick 🐥 x ... View more

@mrseggy wrote: No-one? Is this not a very active forum?  Hello Mrseggy,  It is a relatively active forum and it is unfortunate you have not had a response.  However, perhaps as myself, people are not too sure how to respond as we do not have sufficient knowledge or expertise on the subject nor are we able to give a medical diagnosis.    If you are worried about any bleeding, I would advise getting in touch with medical services for direct advice.  You may also want to post your query regarding abcess and cancer risk to the Ask The Nurses part of the forum or contact them directly  on the helpline  on Monday.    I do not think you are being ridiculous. I think you are very worried and scared and looking for reassurrance.  Obviously I am not sure what you found on Dr Google.   From information on this site i. e. Breast Cancer Now,  it does say that "if symptoms don't improve after anti biotics you may be referred to a breast clinic and may have several tests including mammogram".  It may not seem like it, but it is good that they are being thorough.   There is also information on this site about Mastitus which to my limited knowledge, can lead to abcesses. This is the link and I apologise if this is not relevant to you.  https://breastcancernow.org/information-support/have-i-got-breast-cancer/benign-breast-conditions/periductal-mastitis   I do hope your appointment is soon becauae it can be a nightmare waiting for these things.  Best wishes to you,  Chick 🐥 x   ... View more

Hello Wonky, Sorry to hear about your experience. Lumpectomy or otherwise, one  can still have a negative experience as in my other post on the matter,    https://forum.breastcancernow.org/t5/Recovering-from-treatment/GRRR-Prosthetics-Nurse/m-p/1295706#M47200   I did feedback my experience of the Grrh... visit and received apology and offer to talk directly with the coordinator etc and arrange another visit.  Maybe it would be helpful for you to feedback how you experienced the appointment to the Service.  As I say, I am grateful for having access to all the Services and treatments but not always glad about the way they are delivered.  Fortunately my experience at the other Service was very positive.  Regards,  Chick 🐥 x   ... View more

Hello Lara,   I probably won't help much with your specific question, however I also did not want to just bypass your query.  Perhaps you could also ask the question in the Nurses section and they may point you in the direction of more specific recent research.  Is there a  reason that  you are asking, for example that you have managed it well and want to continue, that it has been recommended that you continue or stop, that it has been hell on it and you want to stop etc?   I think the evidence for extended therapy with Tamoxifen or Tamoxifen and an Aromatase inhibitor like Anastrazole, for primary breast cancer, is more  available and clear cut than extended therapy with AI only.  If you are looking for evidence in terms of scientific study, then you can research yourself by typing in "evidence for extended use of Aromatase Inhibitors" or similar and you will get a number of results. Generally speaking, there was some evidence of improvement of disease free survival, reduced occurrence in the other breast as well as other results after 10 years. Other research has indicated that 7 years of therapy with an AI only may be sufficient and just as good as 10 years.     However, whatever scientific research indicates, it is also about the individual and their specific circumstances.  It is a discussion best had with medical staff (preferably from Oncology as they should have the most up to date information), as well as taking into account your circumstances including risk profile.. For example, grade and stage of original cancer,  degree of hormone sensitivity of the tumour, other  health issues, side effect issues, and quality of life issues.     In my opinion, treatment is still rather like a lottery.  Continuing with it is about  weighing up the individual risks and benefits as well as taking into account scientific research and making an informed decision based on that. Best wishes to you Lara, Chick 🐣 x ... View more

Hello Helen,   Sorry to hear you are having such a worrying time at the moment.  I can not give you any specific advice about raised LFTs apart from to say that as far as I am aware  there are a number of causes  that can affect the levels of the  various substances tested including being on certain medications.  Did you ask the GP for any specific details? Don't be jumping the gun just yet Helen.  Breathe deep and remind yourself to take one step at a time.  If you are going to the breast clinic, they may also take a blood tests.  You could also let them know about your recent blood tests and any worries you may have.    Anyway Helen, I just wanted to wish you all the best for your appointment at the breast clinic on Wednesday.  Bear in mind that there are various causes of breast lumps and most are benign.  Whatever the outcome, you are doing the best thing now and getting yourself checked out at an early stage after finding it.  I have attached a link to the information on this site which explains what might happen at your appointment.  Sometimes places send you an information booklet/written information  to prepare you so it's a shame if you did not get anything like that.    https://breastcancernow.org/information-support/facing-breast-cancer/what-expect-breast-clinic-appointment   My initial experience was over 3 years ago.  Remember all our experiences may be different and the need for further tests will depend on the outcome of others. On attending the clinic,  I was first sent for a mammogram and then  had a chat with a nurse giving information and then a physical exam and chat with a doctor and nurse.  Based on that,  I then needed to have an ultra sound around the breast and lymph nodes under the arm  and then had to have a fine needle aspiration (FNA)  on the lump and from one lymph node.   I felt very exposed during the ultra sound and was a bit uncomfortable during the FNA.  I remember a very nice nurse trying to distract me and giving me her hand to hold.  I like to know what is going on so I kept my eye on the screen and also asked questions.   I  then had to wait to see the doctor again where I was given an indication of the results but not a  definite diagnosis as I needed a core biopsy based on the FNA results of the lump.  Ideally I should have had the core biopsy that day but had to wait two weeks for it instead.    It all lasted hours and at one point I got sick of waiting endlessly in the waiting room that I told them they had to give me a time to come back because I was tired, thirsty, hungry and had a bleeding headache and I needed a change of scenery!  So be prepared just in case you have a long wait as these places can be very busy.  I was ok on my own as this was preferable for me whatever the outcome, However, this is not everyone's cup of tea so maybe think about going with someone if you haven't already arranged this.    Take care Helen, Chick x       ... View more

Hello Wonky,   As some other  replies have said the DEXA scan is for bone density purposes unlike a nuclear bone scan. You may want to check with the nurses (on here or otherwise) regarding tamoxifen. As far as I know, Tamoxifen may have negative effects on bone density for pre-menopausal women and yet may have a positive/protective effect for post-menopausal women. Medical guidelines do not seem to recommend a dexa scan for people on tamoxifen generally. Below  is from current NICE guidelines:   "Bone health 1.9.4 Offer a baseline dual‑energy X‑ray absorptiometry (DEXA) scan to assess bone mineral density (BMD) in women with invasive breast cancer who are not receiving bisphosphonates as adjuvant therapy and who: •are starting adjuvant aromatase inhibitor treatment or •have treatment‑induced menopause or •are starting ovarian ablation/suppression therapy. [2009, amended 2018]   1.9.5 Do not offer a DEXA scan to women with invasive breast cancer who are receiving tamoxifen alone, regardless of their pretreatment menopausal status. [2009]"   Maybe you could clarify with the medics who suggested it to you the reason for it being offered. I almost had to wheel and deal to get my first one two years ago and a subsequent review one recently even though I started on an AI. Sometimes it is not offered in accordance with NICE guidance and hospitals may have their own procedures and assessments. Regards. Chick x ... View more

Hello MM,   Just also wanted to say how good It is  to hear about someone being on hormone therapy for 5 years and is worrying that the treatment will be stopped.  Thanks for your positive story - even if you did not mean it to be!  I take it you manage any side effects well.    I would think discussions and decisions  of extended hormone therapy are in line with the people's risk profiles regarding their initial diagnosis.    However if hormone treatment risks were outweighing perceived benefits then I think that would be a good reason to have a break or discontinue treatment.  I also think the evidence for 10 year use is more available for tamoxifen or tamoxifen plus AI than AI use alone.  However you only have to see the number of posts on this sight where people have said they have been advised to take AIs for up to 10 years etc.  I was initially advised 10 years and then another Onco said 5 years as no clear evidence for the benefit longer!!  Well I don't know about that as there does seem to be some evidence.  If I make 5 years, then I can have the debate nearer the time!!   If it was me then I would be thinking it is my final regular hospital check so it could feel like having a safety net taken away along with worrying about whether they may also try and remove another piece of protection like the medication.  It's funny isn't it, we may worry about  forthcoming appointments/scans/meds and then we may worry about not having them.    I hope some other folks come along who have had their final follow up appointments so you can have a better insight.  I have only just had my third appointment.  Believe me, the only reason my hormone treatment was mentioned last time was because I brought it up.  It has never been mentioned by medics  in any of my annual follow up appointments with the breast clinic. Maybe you want to consider grabbing the bull by the horns for your appointment and to write down any queries etc you have  before you go.   All the best to you again, Chick x ... View more

Hello Mystery Mouse,   I can't advise you about 5 year appointments or your individual hormone treatment time.  I just did not want to bypass your post without wishing you well for your appointment and generally.    Hopefully you can put your worries to one side and see what is said at your appointment.  I think the Nice guidance advises practitioners to recommend or consider (depending upon a person's risk profile), extended hormone treatment of over 5 years with an aromatase inhibitor like Anastrazole even after 2 years on tamox so don't know if that may allay your fears.  If they originally said treatment for at least 10 years, has something happened to make you doubt that that will be the case?   Best wishes to you, Chick x ... View more

Hello Kas,   I am unclear if your reply is to my Post or not.  If not then ignore the following. If it is then,   I did not ask a question whether Soy contain Isoflavones that you seem to be replying to.  I never stated anything about you mentioning supplements etc so I do not understand the reason for the  response.   In your response 21.03.19 you state:   "It's possible that soy advice is out of date."   and then Seabreeze responds  to you   "I think the jury's out on soy phytoestrogens...or from what I've heard........" etc   The only reference to "soy advice" so to speak, that I could see that you would appear to be referring to  is in Cath50's  original post detailing the NICE guidelines at that time , specifically guideline 1.13.14.    All I was saying was that the advice stated in the NiCE guidelines, (at that time in 2016),  is not out of date and is really restated in the current NICE guidelines (revised July 18).  I then went on to clarify that NICE , to the best of my knowledge, are advising regarding supplementation rather than naturally occurring dietary substances.   Hope that clarifies things for you. Regards, Chick x             ... View more

Hello SJ,   I really feel for you going through pre-treatment waiting game  again.  I won't pretend it is not one of my fears, and a fear for many of us I would assume.    I hope you can make use of direct support services in your area to help you and your girls if you feel it is needed.  How is your daughter now?  Did she manage to talk through her worries and fears with you or with another trusted adult or even have other ways of positively expressing her feelings through art or a diary etc?  Do you have someone who is clued up and who you can directly talk things through with other than your daughters?   Really glad to hear about your clear bone scan.  It may not seem like it but it is good that they are being thorough even though it must seem like it is prolonging the waiting agony.  No point starting to treat is they are not clear about the full diagnosis.  I don't what it was like for you the first time regarding time line for diagnosis and treatment but I was about 8 weeks from my first appointment at the breast clinic to first chemo and at times I could have climbed the walls so to speak whilst trying to retain the normality of life.  I suppose one way of trying to deal with it (and not saying that this should be anyone else's way) was to research treatments, effects and put any preparations in place just in case needed.   Your workplace sounds really good but yes maybe being in that environment, especially the first week and a bit after chemo may not do you many favours and you need to do what is best for you.    Do you still have your appointment with Onco on the 17th?  I had the most helpful and patient Oncoman, hope you get an approachable one too.   I hope your ultrasound will have been done by then and the full results are in.  Fingers crossed for you SJ x   Best Wishes as always, Chick x         ... View more

Hello again Stephani,   Sleeping for 8+ hours in a row - bleeding brilliant and I am envious.  I can identify with post operative pain and tightness.  My main ops were over 2 years ago.  I enjoy a good stretch out on the (assisted) chinning and dipping apparatus at the gym - not that I am recommending this near masochistic tendency for anyone else - each to their own and all that.  Anyway before I digress, I just wanted to say in relation to your statement:   "Bone and joint pain is getting steadily worse but I have not done what I know I should do as far as diet goes: cutting out all sugar, dairy and non-organc animal proteins."   Has someone advised you to do all these things or is this something you have concluded yourself.  It is not my place to say what is right or wrong as I think it is a very personal thing and we need to make our own informed choices.  However, if you happen to be beating yourself up about not doing these things then I would advise you not too. Remember, if you were to try to cut out all sugar you wouldn't be having any fruit or veg etc!   The research  jury is still out so to speak on the best specific diet to follow apart from the usual healthy eating guidelines,  but there is apparently strong evidence for no alcohol with regard to breast cancer (see links below).    Reading all the pros and cons of various foods can make your head go to mush and get you questioning anything that is going past your lips or on your body.  If you do choose to cut out dairy, make sure you have a suitable alternative dietary supply of calcium (although I note you take supplement) especially with letrozole and other AIs.  An advantage with taking Tamoxifen when post menopause is that it can be protective of the bones and not deplete bone calcium.   Anyway, just in case you or anyone is interested, to quote Breast Cancer Now's response to a recent post on diet:   We would encourage anyone who is considering advice around diet to refer to the information from the World Cancer Research Fund.   The World Cancer Research Fund pulls together the most authoritative scientific research from around the world on cancer prevention and survival after breast cancer through diet, exercise and weight management to help people make informed choices to reduce their cancer risk.   For those who want to read more about breast cancer prevention:   Diet, nutrition, physical activity and breast cancer   For those who have been diagnosed with breast cancer:   Diet, nutrition, physical activity and breast cancer survivors   I also attach another link to the World Cancer Research Funds Table of Contents for the whole "Diet, Nutrition, Physical Activity and Cancer: a Global Perspective" with individual links to specific items such as meat, fish and dairy products,  as well as links to specific types of cancers.    https://www.wcrf.org/dietandcancer/contents   By the way, love and healing to you as well Stephani,......and enjoy your grub. Chick x       ... View more

Hi, Thanks for response.  However, again I was not asking about spam.  Perhaps my previous  communications were unclear.  Anyway, no need to respond to this reply. Regards, Chick x ... View more

Hello Helena, Thanks for that.  As initial Post, I was not really asking about the Spam and Scam type post referral.  As indicated previously, their removal is sufficient response.  So what does happen if someone has a specific concern/opinion.  For example,  would the referrer receive a specific response by email or whatever within a certain time frame, irrespective of whether the concern is upheld or not? Regards, Chick x ... View more