Breast Cancer Care Forum

Hi Teresa   Thanks for posting.   It’s unsurprising that you feel scared and confused about the meaning of the recurrence of your breast cancer and how you will be monitored in future.   As everyone’s situation is different it’s not possible for us to say what’s best for you. However, you could ask your oncologist to discuss the scans and management plan again and explain your personal situation in more detail. You could ask if regular scans are an option for you.   Some of the terminology, such as ‘remission’ and ‘all clear’, are used in the media to define if treatment has been successful. This can be unhelpful, as some cancers may return, despite treatment.   If you have a breast care nurse, you may find it useful to talk to her about your feelings. Your GP may be able to discuss referring you for some counselling to offer strategies to help you cope with your anxiety. NHS Choices provide some information called Moodzone which might also help.   At Breast Cancer Care, we offer a variety of services, which offer support.   You’re also welcome to call our free, confidential Helpline if you would like to talk this through more or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Addie   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Mizzy   Thanks for posting.   It sounds as if you’re having a tough time with your joint pain from osteoarthritis.   When you go to see your GP, it may be a good idea to get a referral back to your oncologist to discuss your options. HRT isn’t usually advised in women who have had breast cancer, although symptoms which are affecting your quality of life should also be taken into consideration. The risk of your breast cancer coming back long term will also need to be considered.   Your specialist team may wish to investigate your symptoms to check the pain is not due to other causes. Taking regular pain relief and anti-inflammatory tablets also may help.   At Breast Cancer Care, we offer a variety of services, which may help to support you now or in the future.  Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Addie     Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Beauty60   Thanks for posting.   It’s natural to worry about your mum, when she’s due to have a major operation which may frighten her and it’s difficult when you can’t be there to support her.   You could make contact with the breast care nurse or surgeon at the hospital where your mum’s having her treatment and explain your concerns. As she’s vulnerable, they may be able to advocate for her and make sure she’s well supported when she comes to hospital.   Length of time in hospital varies. They may wish to prolong her stay to make sure she’s recovered sufficiently before being discharged. You may want to look at our booklet Your operation and recovery to read more about what your mum can expect from admission to hospital.   However, it can sometimes be more disorientating for patients with dementia to be in unfamiliar surroundings so it might be best to go back to her care home as soon as she can.   If your mum lives in a nursing home, there should be nurses who can care for her wounds and make sure she’s safe. You could call to check this with the manager of the home.   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Addie     Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.       ... View more

Hi Sophiemumto4   Thanks for your post.   It’s understandable you are concerned about the lumps, burning sensation and stabbing pain you are experiencing in your breast, and it’s good your GP has organised for you to have a scan at the breast clinic.   It’s natural to feel worried or frightened that you have breast cancer, especially if other people in your family have had it. However, breast cancer is uncommon in women of childbearing age, and the vast majority of people who are seen at a breast clinic will not have breast cancer.   Many people find it’s an anxious time waiting for their appointment. It can help to keep busy or to talk to family and friends. However if you would like to talk to someone about any concerns do call our free, confidential Helpline . The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Anne   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Maggiemay   Thanks for your post.   There is no need to panic about forgetting to take your tamoxifen this morning. You could take the missed tablet when you get home and get back to your normal time tomorrow.   Although it is best to take it at the same time every day, if you ever miss a dose the level of the drug in your body will remain high enough from the previous day.   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Anne   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Julie Thank you for your post. Some women do consider discontinuing their hormone therapy if they are experiencing side effects that impact on their quality of life. I’m not sure what trial you have found. The data to support the use of adjuvant tamoxifen come from the 2011 Early Breast Cancer Trialists' Collaborative Group (EBCTCG) meta-analysis, which compared tamoxifen treatment for five years with no endocrine treatment. The abstract for this is here. There are many trials looking at tamoxifen but other major trials include aTTom and ATLAS. What can be more useful for an individual is an online tool to help with decision making such as NHS Predict. I wonder if you have spoken to your treatment team about how you are feeling. There are various different options for women who are experiencing side effects with hormone therapy. This includes treatments to manage side effects, taking the tamoxifen at a different time of day and some women say the brand they have makes a difference. You may have already tried all these things. It may be possible to swap to a different type of hormone therapy. Although these also have side effects some women tolerate them better. As with all treatment it’s important the benefits outweigh the drawbacks. For some the decision is made, in consultation with their doctor, to stop the treatment. Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000. Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.   We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Jane Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Rio1990   Thanks for posting.   Breast symptoms often cause a lot of anxiety and waiting to be seen at the breast clinic does add to the worry.   A woman's breasts undergo many different changes throughout her life and breast changes such as you describe can happen for many reasons. They may be part of normal development, hormonal changes as part of your monthly cycle (period) or due to benign conditions (not cancer) especially in someone of your age.  However, we are unable to say what has caused the lump and burning pain you have noticed but it’s good that your GP has referred you to get it checked out.   Waiting for a clinic appointment does add more stress so you may want to check with your GP or the hospital when your appointment is likely to be. In the meantime knowing what to expect at the breast clinic might help you feel more prepared.     While it’s understandable that you are reading up about symptoms online it’s important to remember that this is general information and not specific to your individual situation.                                                                       Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Eve   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.   ... View more

Hi Emch15   Thanks for posting.   We hear from many women who experience breast pain. Most of these symptoms are due to benign (not cancer) conditions or hormonal changes.   However, breast awareness is about noticing anything that isn’t normal for you and so it’s good that you’re going back to your GP.   You may also be interested in our mini guide, Taking care of your breasts. This pocket sized picture leaflet describes a number of breast changes to look and feel for; a change could be anything that is not usual for you.   For more details see our booklet Know your breasts: a guide to breast awareness and screening.   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Addie   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Nanny Cuddle   Thanks for posting.   It’s good to know, here at Breast Cancer Care, we’re able to support people, like yourself, at such an anxious time. We hope this inspires others to seek the help they deserve.   You’re also welcome to call our free, confidential Helpline if you would like to talk things through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Addie     Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hi Zellah   Thanks for posting.   Tamoxifen can certainly cause the side effects you describe. I wonder if you have spoken to your treatment team about this. They can offer you support on how to manage these menopausal symptoms or explore the possibility of changing to a different type of hormone therapy such as an aromatase inhibitor.   As Cola1 says sometimes taking it at a different time of day can make a difference to how it effects someone so this might be worth a try.   It’s difficult to say what the chance of recurrence is if you stop taking the tamoxifen. This really depends on many different factors. There is an online tool called NHS Predict that can help work out the possible benefits of hormone therapy so you may be interested in entering your details. Again this is something to discuss with your specialist   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     You may be interested in the range of other free services we offer.   We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Jane   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.   ... View more

Hello Barbelle   Thanks for posting.   Your question is not odd at all and something we are often asked.   The aim of treatment for primary breast cancer is to remove all the cancer and reduce the risk of the cancer coming back. As you have completed treatment (apart from the tamoxifen) and if there is no evidence of cancer in your body, you would be considered free of cancer.   Terms like cancer free, in remission and all clear are often used in conversations or by the media.  But these terms can be confusing and it can sometimes to be difficult to know what they mean. Being told you are all clear or in remission means that there is no sign of cancer in your body at that time.   However, following a diagnosis of breast cancer, there is unfortunately, always a risk of the cancer coming back (recurrence) at some point in the future. Most women do not develop a recurrence but it isn’t possible to guarantee who will definitely be cured (meaning the cancer will never come back).   It’s often easier to explain things like this over the phone. If you would like to talk this through please feel free to call.  Your call will be confidential and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000 (Text relay prefix 18001).   Our usual opening hours are Monday to Friday 9am to 4pm and 9am to 1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.   You may also be interested in the range of other free services we offer   Thank you for contacting us. Please contact us again in the future if you have any further queries.   We are currently reviewing our email service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Kind regards   Jane   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hello SMBW18   Thanks for you post.   It’s understandable that you want to know if the rib tenderness and stiffness when extending your arm and consolidation feeling, is normal after treatment for breast cancer.   These symptoms are not usually side effects of anastrozole. However, as Elaine Maria says both surgery and radiotherapy to the breast can cause side effects such as stiffness and discomfort around the shoulder and breast/chest area that can continue for some time after treatment.   We always recommend letting your breast care team know about any new symptoms or side effects. You can contact your breast care nurse at the hospital and ask if they could bring forward your March follow up appointment, so they can assess the area and let you know what might help sooner.   Sometimes arm and shoulder exercises can help with stiffness but if you are finding this is not helping, you can ask if your breast specialist or GP could refer you to a physiotherapist. They may be able to suggest some gentle exercises to help you get back the range of movement that you had before your surgery.   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Teresa   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.   ... View more

Hi Emch15   Thanks for posting your question.   We hope to be able to respond to you tomorrow.   In the meantime our Helpline is open until 4pm today, and from 9am tomorrow if you would like to talk things through.    If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you   With best wishes.   Lisa   Ask Our Nurses Co-ordinator Please read the Ask Our Nurses disclaimer . ... View more

  Hi Julie   Thanks for posting your question.   We hope to be able to respond to you tomorrow.   In the meantime our Helpline is open until 4pm today, and from 9am tomorrow morning if you would like to talk things through.  If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you   With best wishes.   Lisa   Ask Our Nurses Co-ordinator Please read the Ask Our Nurses disclaimer . ... View more

Hi Nancy Cuddle   Thanks for posting your question.   We hope to be able to respond to you tomorrow.   In the meantime our Helpline is open until 4pm today,and from 9am tomorrow morning if you would like to talk things through.    If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you   With best wishes.   Lisa   Ask Our Nurses Co-ordinator Please read the Ask Our Nurses disclaimer . ... View more

Hello Idkman   Thanks for your post.   It’s understandable to feel worried about the bump or lump, rash and slight pain you’ve noticed in your breast. Breast changes can happen for many reasons. They may be part of normal development, hormonal changes as part of your monthly cycle (period) or due to benign conditions (not cancer). You’ll probably find your breasts change quite a bit throughout your life.   Getting breast cancer in your teens is very rare. Breast cancer is also uncommon in women in their 20s and 30s so the change/s you have noticed are much more likely to be because of one of the reasons mentioned above rather than cancer.   It’s understandable you are concerned though.  Is there a trusted adult such as a parent or family member you could talk to? Although any changes are unlikely to be anything wrong, you can check this out with your GP or practice nurse at the GP surgery. They will hopefully be able to explain what has caused the change and put your mind at ease. If you feel embarrassed or uncertain about seeing a doctor you can take someone with you. In most practices they can offer you the choice of a female GP. You can also tell them about the rash you have that gets better with using cream and an icepack.   You can give us a ring here on our confidential Helpline to talk about this a bit more if you like. It’s free (including from all mobile networks) and the number is 0808 800 6000.   Our opening hours are Monday to Friday 9am to 4pm and 9am to 1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.   We are currently reviewing our email service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Kind regards   Teresa   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

Hello Adriana   Thanks for your post.   It’s understandable that you want to know how to get the best support from your breast cancer team following treatment for breast cancer. How you are followed up after treatment for breast cancer can vary depending on your individual needs and on the arrangements at the hospital you have been treated in.   Some hospitals suggest that you make an appointment when you have a particular concern, side effect, or possible symptom, rather than have regular appointments. As you have particular concerns about tamoxifen that you would like to speak to your oncologist about, you can ask your GP to refer you. You can also contact your breast care nurse about this. Your oncologist’s secretary may also make an appointment for you. When you see your oncologist you can talk to them about how you can feel more supported.   We offer a range of services that might also help you feel more supported. This includes a health and wellbeing event called Moving Forward. Our Someone Like Me service might be of interest as well the main section of our Forum. You may also find our BECCA app of interest.   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.   We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Teresa   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.   ... View more

  Hi Debwill   Thank you for your post.  I’m sorry to read that your surgery has been cancelled.   As you say, Pseudoangiomatous stromal hyperplasia (PASH) is a rare benign (not cancer) condition, which tends to be a slow growing and painless lump. PASH is mainly found in pre-menopausal women, so is thought to be due to hormonal changes.   As is often the case with rare conditions, there are no specific guidelines as to how PASH should be managed.   Surgery to remove the area is often considered if the area is getting larger or if the diagnosis is uncertain. However, an alternative course of action would be to monitor the lesion, utilising imaging, such as ultrasound.   Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.   Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.     We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Heidi   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.     ... View more

Hello Miss Mo   Thanks for your post.   I’m not sure from your post if the numbness you are experiencing is in the side you had your surgery. It’s not uncommon to have numbness and changes in sensation on the side where you have had the surgery and this can continue for some time.   One of the most common side effects with exemestane is aching or pain in the joints and/or muscles.  As you have noticed numbness and tingling over the last two weeks it may be related to a less common side effect of exemestane- carpel tunnel syndrome. This is a condition that causes feelings of pain, tingling, coldness or weakness in the hand. It would be a good idea to talk to your hospital team or GP so that they can assess you further.   We often find we can help people more by talking to them on the phone. You can call us on our free, confidential Helpline. The number is 0808 800 6000 (for hearing-impaired clients use Text Relay prefix 18001).   Our usual opening hours are Monday to Friday 9am to 4pm and 9am to 1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.   We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Best wishes   Rachel   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more

  Hello Kir53   Thanks for posting.   This sounds like you are having a really difficult time. Waiting for results is especially hard.   From your post you say your doctors had thought the area of change was a benign nipple adenoma but that when the pathology results came back from your biopsy they were concerned that it could be an adenosquamous tumour. Adenosquamous tumours, whilst rare, tend to be a low grade form of breast cancer. The uncertainty related to your diagnosis may in part be related to the fact that low grade adenosquamous tumours can look similar under the microscope to benign nipple adenomas.   We often find we can help people more by talking to them on the phone so you may wish to call us to talk through how you’re feeling. You can call us on our free, confidential Helpline. The number is 0808 800 6000 (for hearing-impaired clients use Text Relay prefix 18001).   Our usual opening hours are Monday to Friday 9am to 4pm and 9am to 1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.   We are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.   Kind regards   Rachel   Breast Cancer Care Nurse   Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread. ... View more