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Lymph node visibility in imaging
Hello, I've been reading these forums for a few weeks and finding them very helpful - thank you to all that share their knowledge. I'm trying to understand more about lymph nodes and imaging. For my backstory... My ultrasound showed nothing suspicious in my lymph nodes. A month ago I had a lumpectomy for IBC (1cm ER+ PR+ HER2- grade 1) and sentinel node biopsy where they found spread to 3 of 4 lymph nodes including one with 0.3mm of extranodal spread. On Monday I had CT and whole body bone scans. Today the surgeon rang to say the scans were all clear however the next step is more surgery to remove 12-20 lymph nodes. This sounds like axillary lymph node dissection. I'll get the reports and paperwork next week to make better sense of it and then I'll chat to my breast care nurse. We're a bit puzzled over how my lymph nodes are so involved for such a small grade 1 tumour. I'm wondering whether my involved lymph nodes should have shown up on the ultrasound, and whether nothing showing up on the post-surgery CT is a useful sign that other nodes might not be involved. Does anyone have experience of lymph node involvement without it showing up with imaging? Or do they show up on some types of imaging but not others? Or did you have axillary lymph node dissection even with a clear CT scan?
Scalp Cooling - long curly hair
Hi all, I started TC (docataxel/ cyclophosphamide) two weeks ago and had the scalp cooling PAXMAN. My hair is naturally curly and long, just past the shoulders. On day 15 post first chemo half of my hair came out as I combed the conditioner through in the shower. I've tried so hard to only wash my hair once every 5 or 6 days and do not brush it at all. Have others in this situation had their hair cut to a short bob length, or gone straight to a very short hair style? Are there any specific brands of shampoo and conditioner that are gentle enough that are also moisturising enough to comb the conditioner through the curls without causing more pulling? Has anyone had success with keeping some of their hair?
Ice Caps to prevent hair loss
Are you worried about losing your hair during chemo treatments? For me keeping my hair was very important. I am a private person and the thought of people seeing me hairless felt very intimidating and public. I wanted to choose who I would like to tell I had breast cancer and not just be on display everywhere I went for everyone and anyone to diagnose. I decided to give ice caps a try and it was absolutely successful. Keeping my hair gave me a sense of control over the chemotherapy and its nasty side effects. For me it became an uplifting and very positive experience, giving me something satisfying to focus on, instead of on the cancer.
CBD oil effects
Personally, CBD stopped excruciating leg pain that the doctors could not diagnose and it also stopped my nausea. Prior to taking it I would pace the floor crying for hours as I could not get relief and it felt like someone was stabbing my legs. The drawback for me was it gave me borderline runs. Not enough to take anything for it, but enough so I needed to be near the loo. The advantage outweighed the side effect. If you need pain relief, it is certainly worth trying. I would love to hear other peoples reactions to this drug .Tips for post surgery home care?
Hello. Thanks for all the posts, they are so, so helpful. First time posting for me :) I'll be having a single mastectomy, heart side in about a month (waiting for date to be confirmed). I'm wondering what people found useful to make the home care more comfortable? For example, getting out of bed, being comfortable enough to sleep (I'm a side sleeper - right side down), showering. Are there any tips you have so I can start to organise before surgery? I live on my own and don't have children, and will have friends and family to help me. I'm also a little nervous as I have pets, who are used to being on the bed - any advice here? With thanks.
The Choice to walk away from AIs ...... some women are!
An interesting article on AIs and those choosing to not take them. I’ll continue taking mine tho ..... The Choice to Walk Away From Aromatase Inhibitors September 1, 2017 Bonnie Annis RELEVANT TOPICS Aromatase inhibitors cause unwanted side effects. More and more women are choosing not to take them, but is this a good idea? The decision to walk away from taking aromatase inhibitors is a choice many women are now making. No longer do they blindly follow the advice of doctors to take medication for the next five to 10 years that may or may not prevent the recurrence of breast cancer. Women are choosing to make informed decisions. They’re doing their homework and learning more about the potential side effects of drugs like Tamoxifen, arimidex, aromasin and femara. Their health care responsibility has shifted from the shoulders of their medical team into their own capable hands as women are discovering they have a right to choose. Standard adjuvant therapies after a breast cancer diagnosis often include one or more of the following: chemotherapy, radiation treatments, surgery or long-term medications such as SERMS (selective estrogen receptor modulators). According to an article Posted by Breastcancer.org, “Tamoxifen, the generic name of nolvadex, is the oldest and most-prescribed SERM.” It has been used in both women and men diagnosed with hormone receptor-positive breast cancers to reduce the possibility of recurrence. Tamoxifen is the first choice for premenopausal women while aromatase inhibitors are used primarily for postmenopausal women; however, in cases where postmenopausal women cannot tolerate aromatase inhibitors, Tamoxifen may provide an alternative option. Tamoxifen may help reduce the risk of new cancer growth, shrink tumors, help prevent bone loss and lower cholesterol levels. But even with all of its benefits, Tamoxifen does come with side effects. Some side effects are mild while others are more severe. Common side effects include: hot flashes, fatigue, changes in mood, depression and night sweats. Some of the more serious side effects of Tamoxifen include blood clots, stroke, endometrial cancer and memory loss. Aromatase inhibitors (AIs), like arimidex, aromasin and femara, are also used to help fight cancer cell regrowth. These drugs work to block cell receptors like estrogen and progesterone in breast cancers that are hormone receptor positive. Aromatase inhibitors have similar side effects to those of Tamoxifen but also affect bone health. Women taking AIs are periodically asked to take a bone density test to rule out physical problems such as osteopenia or osteoporosis. With a high risk of unwanted side effects, many women are opting out of taking the recommended anti-hormonal therapies recommended by their oncologists. Instead of taking oral medications, these women are choosing to manage their own health through preventative measures such as weight loss, diet, and exercise. Along with these choices, some women choose to add natural supplements to their health care regimen. These decisions are made carefully and are often weighed with the help of family members. Some women make their decision to stop taking medication after trying one drug for a period of time and then possibly switching to another only to find the same debilitating side effects occur. The decision to have a better quality of life becomes paramount. I was one such person. In my particular case, I was post-menopausal when diagnosed with stage 2B invasive ductal carcinoma. I also had lymph node involvement. After surgery, I met with my oncologist to go over the recommended treatment plan. My plan included chemotherapy, radiation and medication. I talked with my oncologist and asked to be given time to weigh the pros and cons of each treatment option. After taking several days to research and discuss with my family members, I chose not to follow my doctor’s advice for chemotherapy. I did not make the decision lightly. I weighed several factors such as my family medical history, my oncotype DX and fluorescence in situ hybridization (FISH) scores, my stage and grade of breast cancer along with the number of lymph nodes involved. I did agree to radiation treatments and went through 28 rounds of radiation. When it came time for me to begin the adjuvant therapy of medication, I didn’t expect to have any problems and gladly began taking the first prescribed medication, arimidex. I was told I’d need to take it for 10 years. After several weeks, I began noticing some unwanted side effects. The most prevalent side effect was severe bone and join pain. At that time, I was 56 years old, but felt more like I was in my mid 80s. With the bone pain came horrific mood swings and depression. I found myself crying all the time, which was very abnormal for me. My sleep was disrupted to the point I need to take sleeping pills. I began to experience hot flashes that were more intense than when I was going through menopause. I contacted my doctor and told him I didn’t think I could continue to take arimidex. He explained there were many other aromatase inhibitors and we could try another. Feeling like this was an important part of my health care, I agreed to try another drug. I was placed on aromasin. Once again, I tried the medication for several weeks with the same type of side effects. I was unwilling and unable to continue suffering the physical side effects and contacted the doctor once again. This time, he recommended I try tamoxifen, which I did reluctantly. For the next few weeks, I took tamoxifen once a day. Every day, I felt worse than the day before. Tamoxifen made me feel even more horrible than I felt on the arimidex or the aromasin. I made another call to my oncologist. My main complaint with tamoxifen was uncontrollable mood swings and joint pain. He recommended we add a medication called Effexor to the mix. Effexor was an antidepressant drug. I argued I wasn’t depressed although I didn’t feel quite like myself. I didn’t want to add another medication to my growing list. At that point, I needed to reassess my situation. I began to study nutritional supplements and their possible effects on preventing a recurrence of breast cancer. The more I learned, the more I realized I needed to walk away from the prescription medications. Quality of life was important to me. I didn’t want to spend the next five to 10 years feeling physically uncomfortable. It’s been a little over two years since I made the decision to stop taking arimidex, aromasin and tamoxifen. During that time, I’ve added a host of natural supplements to my daily anti-cancer regimen. I’m happy to report I’m feeling good! No longer do I deal with severe bone and joint pain. No longer do I suffer from gigantic mood swings, depression, bouts of constant crying, and overall fatigue. My decision to stop taking the medication was right for me. On several breast cancer blogs and forums, I’ve found there are many women who’ve chosen to stop taking their aromatase inhibitors. The majority of them made their choices due to unbearable side effects. When I explained my desire to stop taking the medication to my oncologist, he assured me the side effects would lessen over time and even if they did not, there were other medications that could be added to combat unwanted side effects. I asked, “Why would anyone want to take one medication to prevent the recurrence of cancer and then have to add more and more medication to keep side effects under control?” It doesn’t make sense to me. What makes more sense is to find a way to keep cancer at bay in a natural, healthful way. I’m so glad I made the choice to walk away from AIs and tamoxifen. I shudder to think how I’d be feeling if I were still taking those drugs today. I hope doctors will begin to listen to their patients and register their concerns. We all deserve a good quality of life, don’t we? Perhaps in the future, doctors will find a better way to help cancer survivors have a brighter tomorrow and hopefully, prescription medication won’t be the answer. For those who’ve been prescribed aromatase inhibitors and are able to take them, good for you! They have been proven effective in preventing a recurrence of cancer. I would never suggest you stop taking your medication. I am not a medical professional and do not claim to be. I would suggest, if you notice an inability to tolerate side effects, you talk to your doctor and seek advice. There may be a better solution. Each individual must make their own choice based on the information available. Choose wisely. It’s your life. Listen to your body. There’s no reason to suffer in silence. http://www.breastcancer.org/treatment/hormonal/serms/tamoxifenEarly breast cancer treatment decision
Hi everyone, I’d really appreciate hearing from others in a similar situation. I’m young, not (as) close to menopause, and recently had a lumpectomy for a 12 mm, grade 1, ER+/PR+ HER2- IDC. Margins were clear, and there was no lymph node involvement. My Ki-67 is low (10%), and I’ve been told I don’t need chemo. The surgeon noted there was no calcification and no need for PET-CT. No problematic genes. My doctor recommended both radiation and tamoxifen, but I’m feeling unsure. Looking at tools like Breast Predict for hormone therapy, the benefit to mortality risk is minimal (0.3% for 5 years, 0.7% for 10 yrs, 1.1% for 15yrs). I'm very healthy, exercise daily for years, healthy diet, don't drink or smoke. My breast are above average and their tissue is very dense. Women in my family have had rough menopause - incl. severe heart issues so I'm worried about the tamoxifen side effects, and I'm thinking an MRI (?) every 6 months is enough. Given how small and slow-growing the tumour was, and how low my recurrence risk seems to be, I’m struggling with whether I really need both/ either radiation and tamoxifen. I know they each reduce recurrence in different ways, but I’d love to hear from others who had similar pathology — especially other younger/pre-menopausal women - If you only did one (or neither), how did you make that decision? I'm meeting with the medical oncologist for the first time this Friday and keen to have an intelligent discussion that may challenge the conventional/ standard treatment. if you have any research to share - that would be wonderful! I'm grateful for any insights or personal stories you’re open to sharing — I’m feeling a bit stuck and trying to weigh peace of mind vs. quality of life. Thanks so much!Oncotype DX and Ribociclib
The Oncotype DX test is highly effective at identifying the 70% of patients who can safely avoid chemotherapy and the 30% for whom chemotherapy is optimal. A sample of a tumour is sent to the US where the testing is done and I was told I needed to pay approx $5000. I have recently been told by my oncologist that I need to pay approx $75000 for my medication called Ribociclib. Some Australian women will be able to access this medication through the PBS however due to not having metastatic breast cancer etc I am not eligible. I can pay the $75000 in installments of $2100 per month via a financial agreement with the pharmaceutical company. How are women affording these treatments?. It doesn't make sense that these treatments are not funded for everyone. The financial pressure this puts my young family through is very difficult. Has anyone found a way around these costs? * please note: the percentages and costs listed above were advised by an oncologist and are approximates.
