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Re: Survivorship struggles
HiDaisymoo thanks for generously sharing - all your observations resonate. I have found being open with my husband (and likeAimBar I shared the science) about what having your oestrogen production switched off does in intimacy and other domains of our life was helpful. Providing that insight and recognition helped us to press ahead and to stay committed to connecting at a pace based on a common understanding. Pressing my oncologist and gynaecologist on options (eg oestrogen cream) has been rather awkward at first, but now they’re very engaged, talk to each other and understand how important wider wellbeing is. I have experienced these pause moments some days too, processing what I have been through; I feel okay to acknowledge to myself that it’s still hard at times. I’m probably an optimist by default but I am trying to value the moments of reflection. sending you all the best 🌸8ViewsSign in to react to this post0CommentsRe: Letrozole explained - a good read
Thank youarpie it is an interesting and helpful article. I am tolerating Letrozole reasonably well but still do have some joint stiffness and don’t know why but sore feet over night. I want to persist with hormone/endocrine therapy but after nearly 2 year of Letrozole I’m going to try Tamoxifen instead of Letrozole this month. Will keep this thread posted!ViewsSign in to react to this postCommentRe: Letrozole and high cholesterol
HiKatie46 I had a bit of a cholesterol “journey”, and have gradually got it down under 7, 18 m after finishing treatment and 18 m of Letrozole. Like your approach (healthy diet and increased exercise) I also cut out alcohol. Long story short it’s pretty stubborn but going in the right direction. At first my Oncologist was concerned but was satisfied with my decision to stay off statins after a few other factors came in my favour (I had a calcium test score of “0”, backing in a test I had 5 years ago), my triglycerides ratio was < 1.0 and I had an ECG stress test that was positive. It feels like how we approach needs to be with an open mind depending on our various medical complexity. Actually this week I discussed giving Tamoxifen a go with my oncologist - I’m hoping some of the side effects of being on an AI that blocks oestrogen production might be relieved - because it works differently. It would be a bonus if it does! According to my oncologist she said it will likely let my cholesterol levels get back to pre bc.ViewsSign in to react to this postCommentsRe: Skin Reaction
HiJodpri that sounds really challenging/ I’m sorry to hear it. have you finished your chemo and immunotherapy? I am not sure if this helps, but I developed a very painful sunburn style flushed red skin (on my face, hands and feet) after my first two treatments. My oncologist advised a slight dose reduction was needed. Once the dose was reduced the skin eventually healed. I was offered a cortisone cream to relieve it and it helped me. Hope you find something to help through this wonderful group.ViewsSign in to react to this postCommentsRe: Ovestin Cream
HiBarbie54 such an important question- I’m trying to get some improvement by using Ovestin (topically applied) 3 x week. I have not been as disciplined as I could have been to apply it every couple of days so it’s a bit early to tell. I also use a product my physio recommended by Olive & Bee and which I noticed others in this network have also been using. My gynaecologist and oncologist are in communication with each other and my GP and the oncologist is very comfortable with me trying this. I am taking the aromatase inhibitor ‘Letrozole’. I was diagnosed with early stage Triple Positive ILC and the treatment was immunotherapy chemo, surgery, radiation therapy and AI treatment. Prior to diagnosis I had been through menopause but I didn’t have any problems with this kind of dryness and skin fragility - I wasn’t on HRT - it’s emerged since starting the AI treatment and became more problematic after having minor surgery for a partial prolapse and a hysterectomy. Wishing you all the best, it’s such an important part of life.ViewsSign in to react to this postCommentsRe: Waiting, waiting, waiting….
I hear you J_C and your feelings of rising anxiety, worry and sense of being given information that does not stack up for you sounds totally understandable. Everything turns on the diagnostics, so the delay in accessing them prolongs the experience. Sorry you’re going through this and sending hugs and positive vibes your way.ViewsSign in to react to this postCommentsRe: Waiting, waiting, waiting….
HiJ_C I am sorry to hear about your diagnosis and hope you’re doing okay, the first few weeks can be a whirlwind of uncertainty. I am glad you’ve had your biopsies completed (they are tough). Everyone’s experience is different but yes I did have at least a week to ten days wait after the initial ultrasound and biopsies before I had the contrast die MRI and other diagnostics like the PET scan. I don’t know what could be meant by “protocols” … sorry. Maybe it’s to do with checking what subtype you have. There’s several different subtypes of breast cancer - I was ILC and a HER2 positive, oestrogen positive and progesterone positive subtype (aka Triple Positive, there’s a Group in this network) and the treatment for this was very targeted. Sending you solidarity- the waiting and uncertainty phase you’re in was something I found to be challenging as I was worrying about re-arranging my life and workplans. Just the wait for a clear plan tested my stress levels! There’s some great podcasts that I recommend as helpful- by a psychologist who has herself had breast cancer (Charlotte Trottman) - you can find these on the BCNA resourced menu. wishing you all the best 🌸🌻🌺ViewsSign in to react to this postCommentsRe: Triple Positive HER2+
Hilollyshopgirl thinking of you 1 year on from your diagnosis. I hope you’re keeping okay and are beginning to see the finish line. Thinking back I remember how ready I was to get to completion ahead of the last two or three cycles of the very extended Triple Positive treatment regime. Sending you all the best!ViewsSign in to react to this postCommentsRe: Discussion about surgery with Surgeon
HiRSVP I am sorry to know you’ve had this diagnosis. I had a “choice”— technically - my breast surgeon’s recommendation was for me to have breast conserving surgery/lumpectomy. Similar toMoomincorn’s experience my surgeon’s recommendation was based on her assessment of a range of factors after she had the diagnostic information. My surgeon and my oncologist recommended that I start 6 cycles of targeted chemotherapy prior to my surgery (Neoadjuvant treatment), as this would shrink the tumour size (it did shrink from 3.8 cm to <1 cm) reducing the quantity of breast tissue she would need to cut out. It might depend on your presentation and cancer type - I had HER2 positive and hormone positive breast cancers (triple positive) which has a very targeted chemotherapy and immunotherapy treatment. The outcome was that my surgery was very smooth and 3 years on from I have no evidence of disease. It’s hard to know if it’s the lumpectomy or the radiation but although I had a speedy recovery after surgery the breast remains sensitive and there’s a little bit of tenderness. The mammogram technician said to think of it like having a suitcase packed differently with parts of the breast contents packed back after surgery. I didn’t but perhaps it would be useful to inquire about a genetic test in case that has interesting insights. I don’t regret my choice to go with the recommendation. All the very best!!ViewsSign in to react to this postCommentRe: Feeling lost
I’m sorry for your diagnosisND87 I had HER2+, ER+ PR+ too - in January 2023; the waiting before you get started treatment is very hard - some great suggestions fromBoobVoyage I had Neo adjuvant treatment and it shrank my tumour from about 3.8cm to less than 1 cm - in some cases it can actually disappear. After my lumpectomy I also had radiation therapy and then 11 cycles (doses) over a period of a period of another 6-7 months. It’s now over 2 years since I finished the treatment and was started on Letrozole (an oestrogen suppressing medication (called an Aromatase Inhibitor) after the radiation. The treatment has been very effective so far - I have a check up every six months- no sign of recurrence so far. It is really different for everyone but I found the following things were helpful: having a portacath in my arm for the IV treatment; Betadene for mouth ulcers and a very soft toothbrush; signing up to an oncology exercise rehabilitation program; having a very soft cotton beanie to sleep in (I lost my hair) to keep my head snug, and having soups and bone broths. LikeBoobVoyage my tastebuds and appetite were a bit knocked around, it’s important to try and stay hydrated, somehow I found having a soda stream made it easier to keep up my fluids. We have a Triple Positive group thread here and it might be helpful for you if you join it? It’s not as common a breast cancer type as hormone positive only, maybe the nurse you have been assigned has not encountered it before. Sending you lots of virtual hugs and best wishes. Sing out with any questions- it’s great that you have found the online forum- there’s a lot of care and wisdom in this group.ViewsSign in to react to this postComments
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Work and breast cancer
PUBLIC GROUP - This is a space to connect around the challenges and questions that come with managing work and breast cancer. Whether you're navigating time off, returning to work, dealing with workplace conversations, or exploring your rights and options, you're welcome here. This group is open to the public (not just members of our online network) to help broaden access to important information, practical advice, and peer support.Triple Positive Breast Cancer (TPBC)
This group is for people diagnosed with triple positive breast cancer (TPBC), a subtype that is typically characterised by higher levels of ER, PR and HER2 protein . While we share personal experiences, please remember that the information in this group is not medical advice—always speak with your healthcare team for guidance.Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
