Breast Cancer Now Forum

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

Hello Kaggy and all,   Best wishes to you Kaggy with your treatment.  Yes it is a lot to think about weighing one treatment against another and taking into account pre-existing/individual situations etc. along with whatever else.  Good for you for reaching a decision even if you are still a little apprehensive.    I remember that feeling too when I decided to bite the bullet with the Anastrozole.  I just thought well if it gets really bad then I will have a break and discuss it with the medics, work my way through the options and so on.  Another motivator was that I knew that if I had recurrence etc, I would be one of those people who beat themselves up thinking ....but what if?.......Arrrh....(even though there are no guarantees with dutifully taking AIs or Tamox).  At least by trying it I could reassure myself and say well I gave it a good go.   A nurse practitioner who undertook my recent annual BC review said that keeping to and maintaining a healthy weight was the most important thing in reducing side effects of oestrogen depletion from the Anastrozole or other hormone treatment.  That the dip in oestrogen production after starting the Anasty would have been less drastic than if I had been larger.  Perhaps,  who knows?  She only brought this up because I had asked  whether having less side effects was a sign of less efficacy of treatment.  She did say that she was not aware of any research to indicate this.  I know - I am impossible aren't I? Concerned about having severe side effects and then concerned if I am finding them manageable at the current time.    I think regarding hormone treatment  we have no real objective test at the moment to see if it is actually working.  At least with blood pressure tabs or diabetes treatment you can at least easily measure blood pressure or sugar levels etc.  Measuring circulating blood levels of hormones  may be an unreliable indicator.   I would not think it would indicate possible concentration of aromatase  in other tissue, for example if  a tumour has started making its own supply of aromatase  (indicating drug resistance).  I assume measuring would be of even less use with Tamoxifen as this does not reduce circulating oestrogen but inhibits its action on tumour cells.   Anyway, I'll just continue taking my chances with the Anasty and lifestyle factors.  Good luck and best  wishes to all, Chick x     ... View more

  Hello all,   The reference to "Soy" that Cath50 refers to above as NICE guidelines 1.13.14 is not out of date.  It is still current and forms part of the latest Early and locally advanced breast cancer: diagnosis and management NICE guideline [NG101] Published date: July 2018  and is stated at the current time as:   "  1.12.13 Do not offer soy (isoflavone), red clover, black cohosh, vitamin E or magnetic devices to treat menopausal symptoms in women with breast cancer. [2009]"   To the best of my knowledge, these are treatment guidelines for medical staff and thus advising them not to offer such items (as supplements) or any magnetic devices (?? such as the Lady Care type device I assume??).     It is not stating that people should avoid any naturally occurring substances found in foods.  For example it is not implying that someone should avoid eating soy substances (containing isoflavone)  or foods containing vitamin E.  As far as I can see, the NICE statement is not making any dietary recommendations one way or the other.    Looking at the information on this site, i.e Breast Cancer Now,  you may wish to look at this link.  It does mention sage in the information (again I with reference to supplements) rather than a lovely dollop of sage and onion (yum) as far as I can see.  You may want to direct any queries to the BC Now Ask the Nurses part of the forum..   https://breastcancernow.org/information-support/facing-breast-cancer/living-beyond-breast-cancer/your-body/diet-lifestyle-breast-cancer-recurrence   "Soy and foods that contain phytoestrogens  Soy foods such as soy milk and tofu contain natural compounds called phytoestrogens. Foods such as chickpeas and linseeds also contain phytoestrogens. Phytoestrogens have a chemical structure that is similar to the female hormone oestrogen. As the hormone oestrogen can stimulate some breast cancers to grow, some people worry whether foods or supplements containing phytoestrogens might have the same effect as oestrogen and increase the risk of recurrence. Current evidence suggests that a diet containing naturally occurring phytoestrogens is safe if you’ve had breast cancer and may be beneficial. Phytoestrogens are also found in supplements including: black cohosh red clover sage These are sometimes taken to relieve hot flushes and other menopausal symptoms. However, these are not recommended because the evidence on their effectiveness and safety is limited and conflicting."   You may also want to look at/download  the BC Now booklet BCC18 Menopausal Symptoms and Breast Cancer https://breastcancernow.org/information-support/publication/menopausal-symptoms-breast-cancer-bcc18?_ga=2.139602611.1087155199.1570268991-96871407.1570268991   What people may chose to use, or eat,  or avoid  is in the end is going to be a personal decision.     I have been relatively lucky with the hot flushes for now even with the Anastrazole treatment.  I hope it continues. For anyone suffering with awful hot flushes, I hope you have found a way of positively  managing these and even greater hope that they have improved naturally.   Best Wishes to all, Chick x ... View more

Hello Maureen,   Sorry to hear that you are having such a rough time.  I don't know about private prescriptions but I suppose you could try a consultation with a private practice.  Might all be rather expensive in the long run when the cost of meds added on top.  I know I probably don't need to say this but please be wary of any online purchasing etc.  It seems a shame that they did not let you have longer on the Femara, as the negative effects may have shown up when using it for a bit longer as it can sometimes take a while for some side effects to take hold and at least you would not be left wondering that it is due to the brand change etc     Just wondering, have you tried asking/discussing with a different GP in the Practice.  I know it is not really the same thing but I started off with the Teva brand of Anastrozole and wanted to stick with it.  Different brands may make no difference to some people but I did not want to risk it nor did I want to be presented with a different brand at each prescription!  I asked one doctor to state the brand on the script.  She said she could not do it as they were not allowed because of costs etc.  I asked another doc in the same practice and she said yes no problem.    How is your break going?  Have the side effects started to subside?  Have other available treatment options been discussed with you like another AI or Tamoxifen?  I know they may have similar side effects but different women have different responses it seems and a change can sometimes mean the difference in continuing or stopping treatment.    Best Wishes Maureen, Chick x ... View more

Hello Judeworth,   Good luck with trying the meds again.  Hope it works out for you and you don't have too many side effects.  You sound like you are giving it a good go by trying various options.  You are so right about it being a personal choice in the end. Hope you have a lovely holiday, Regards, Chick x ... View more

Hello Stephani,   You may want to confirm the following (for example,  via your medical provider/contacting the BC Now nurses on the helpline or by posting a query on the Nurses Section of the forum etc) but as far as I am aware there is no evidence to indicate that the 3  Aromatase Inhibitors (AIs), including Letrozole " can cause other cancers in our reproductive system".     Is it possible that your Naturopath is getting confused with Tamoxifen which is not an Aromatase Inhibitor but acts on circulating oestrogen?  I have attached some information for you below regarding the apparent relatively small increased risk of occurrence.  Bear in mind that Tamoxifen can be a treatment option for both pre and post menopausal women, with some women preferring to remain on it than switch to an AI or are offered  Tamoxifen if they are finding AIs quite troublesome.   The following is from Breast Cancer Now https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/hormone-therapy/tamoxifen   "Effects on the uterus Tamoxifen can affect the lining of the uterus (womb), known as the endometrium, which may become thickened. If you have any unexpected vaginal bleeding or pain, tell your GP or specialist. In a few cases, use of tamoxifen in post-menopausal women may cause polyps or ovarian cysts or, even more rarely, cancer of the uterus (womb). Current evidence suggests that there doesn’t appear to be a risk of uterine cancer in pre-menopausal women taking tamoxifen."   The following is from Cancer Research UK https://about-cancer.cancerresearchuk.org/about-cancer/womb-cancer/risks-causes "Tamoxifen Tamoxifen is a hormone therapy for some types of breast cancer. It can increase womb cancer risk, as it is thought to have a similar effect to oestrogen on the womb. This is a rare side effect of taking it. And the benefits of taking tamoxifen as part of your treatment for breast cancer outweigh the small risk of womb cancer. If you are taking tamoxifen, tell your doctor if you have: unexpected vaginal bleeding vaginal bleeding after your periods have stopped."   If you are beginning to have issues with Letrozole, then maybe discuss with medical staff about your individual risks, benefits  and different treatment options, if you have not done already.  In my opinion,  accepting or refusing medical treatment is about making an informed decision, based on individual risks (including quality of life) and benefits , that a person will be comfortable with.    By the way, I am on Anastrozole and have been for just over 2 years.  I have had a few ups and downs but nothing that has not been too dire so will continue with it for now.  I tend to take it a day at a time so to speak rather than thinking about taking for 5/10/whatever years.   Best Wishes to you Stephani, Chick x ... View more

Hello Fiona, Sorry I can't help directly regarding your experience of chronic hematoma. Mind you I do have a small chronic seroma that I am trying to accept as yet another "souvenir".    I didn't just want to ignore your post. I can understand, a little at least I think, about your reticence regarding more surgery. I have had two offers of surgery for post treatment disc issues and have declined as still feel I am recovering from the BC surgery and its effects.  However I have put my self down for day surgery for scar issues arising from the BC surgery over 2 years ago. I was hoping for a natural resolution but it's not happening. I was down for it previously and cancelled. A bit like you thinking what if it goes wrong and I end up worse etc.  I saw the surgeon a few weeks ago and went through all the pros and cons. Bless him he said to me that it was ok for me still to refuse even if I had got to the stage that I was lying on the operating bed!!   Anyway name is on the list and I am still chewing it over.  I am trying to trust the surgeon again and accept that if the risk was significant, for example that it could make the issue worse etc, then  he would not undertake it.  There are no solid guarantees though.  It's like treatment dilemma after dilemma isn't it? 😞     One thing I would ask you though is why on earth do you feel guilty?  For having and going through cancer treatment and its aftermath?  For wanting the best for yourself?  For what it's worth, I don't think you have any reason to feel guilty. Best wishes to you Fiona, Chick 🐣 x ... View more

Hello Kas,   In answer to your specific question, I meant that it can be a controversial subject that people can strongly disagree on and where advice and research to support or deny a claim  can go one way or/and the other, with research sometimes being cherry picked depending upon the perspective of a person.      Regards, Chick     ... View more

Hello SJ,   I know it can be such a worrying time waiting for the scans and results. I probably had my first near meltdown waiting for the CT scan results etc.  It can all start to feel a bit snail like when you just want to get going and know where you stand.  I think we can also start noticing aches and pains that we probably would not have thought about pre diagnosis and it can all start playing on our minds.   Good for you that you are continuing to work and that you have supportive employers.  I hope they continue to be supportive throughout your treatment.   How are your girls doing? Hope your youngest daughter managed to be a bit  more accepting of open discussion about it last week.    Anyway I just wanted to wish you all the best for your scans this week.  Be kind to yourself! Regards, Chick 🐣       ... View more

Hello Strawb,   It sounds like  hormone treatment has been an absolute nightmare for you.  You seem to have given them a good go as you went through surgery, chemo and the works  in 2015 (? Apologies if I have this wrong).  I would have thought you would have gained some protection from the hormone treatment that you have already had.   That is a very poignant statement you make  "I don't want to feel like taking my own life after fighting for it so hard".   It is still a bleeding lottery with this hormone treatment lark. In the end, as you indicate  you have to weigh up what is best for you and your quality of life in making a decision that you are comfortable with..    So hats off to you Strawb, best wishes, Chick x ... View more

Hello Astra,  I really feel for you Astra. It can really feel like one dilemma after another to worry about with little respite in between.  I can understand your concerns. My breathing has never got back to pre Breast Cancer levels but it wasn't the radiotherapy that did it.    I am not an expert and I obviously do not know your specific details, however is there a particular reason why they would say that you would have permanent damage rather than there is a risk that it may happen.  My understanding is that lung damage is usually a possibility rather than a definite, and that the risk may be higher in people with pre-existing  lung conditions.    Effects of the damage may be imflamation which may clear up or more rarely fibrosis.  It is said that Lung damage is less likely these days  than in the past due to better technology and techniques.   I have attached a link for you about side effects.  https://about-cancer.cancerresearchuk.org/about-cancer/breast-cancer/treatment/radiotherapy/side-effects   As far as I know whole breast radiation is not recommended just for people with TN breast cancer.      My understanding, from NICE guidelines is that it is usually offered after lumpectomy, sometimes with an extra burst to the tumour bed. Partial or  no radiotherapy may be considered/offered in certain circumstances that take into account risk of recurrence, age, low grade, size, node negativity, being only hormone positive and that hormone treatment will be undertaken for at least 5 years, as well as the type of cancer.   Have you had your radiotherapy planning appointment yet? If not this would be a good time to go through risks and concerns again about how any side effects may affect you individually e. g. The possible specific impact on breathing capacity. If you have had your appointment, then just ring them up and ask to go through things again if that would be helpful to you in making a decision about treatment.    Wishing you all the best Astra,  Chick 🐥 x   ... View more