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Re: Post mastectomy and auxiliary clearance concerns ?
Hi Zaza45 I had a similar surgery - mastectomy and 17 lymph nodes - but I can't help about the mobility, mine was excellent, almost immediately. It depends of course a lot on exactly how the surgery has affected muscles and nerves. The weird feelings however seem to be quite common - my left underarm belonged to someone else for months! It's still (nearly 14 years!) a bit dodgy when it comes to feeling temperatures accurately - thankfully I don't wax! I work on the basis that pain is a warning not to overdo, so patience is required but due to my own experience with a protracted and large seroma, I tend to think that the benefits of a good lymphoedema therapist are underrated post mastectomy. As delightful18 says, it may also be a good precaution if you have had several lymph nodes removed. I have lymphoedema, it's eminently manageable, but a good therapist has been invaluable. Early treatment, as for so many things, can save a lot of angst. Best wishes.6Views0likes0CommentsAccess
I am not sure why but many of the posts I access ( I have ticked the 'most recent' box) have a mix of posts ranging from a day or two, to months, to 2 or more years. They are not in any chronological order. I found one today that has several posts from 2 years ago, then finally a three day old question which may be directed to me. Confusing. Logging on has its mysteries too. Today I received six log on 'one time' passwords, that 's happened a few times too. Is it just me?76Views1like4CommentsRe: Just need to talk to someone
Dear CrazyDogLady67 I know it's just a manner of speaking but let's hope no breast surgeon is about to hack or chop in this day and age. Among all the other things to thnk about, you might want to discuss your current thinking about reconstruction. If you were absolutely certain you didn't want it, you might want to talk to your surgeon about a neat, flat closure. If you're not sure and want to wait a bit, that's useful information too - I wasn't at all sure about it so my surgeon left sufficient skin to assist in reconstruction later. Of course, you may want to do an immediate reconstruction in which case you will need to talk of options available to you. My surgeon has become an old friend - nearly 14 years after my mastectomy, he still does a biennial check, has removed a number of little skin things (all quite benign, but best gone), given good advice and bears no ill will that I never did do that reconstruction! I trust your surgeon will prove as good and as useful.29Views0likes0CommentsRe: Just need to talk to someone
Your feelings of confusion and panic (and fear) are entirely normal. Unfortunately, they make it even more difficult to get your head around what is happening and what options you have. Do you have a sensible partner, good friend or relative to accompany you on consultations? It's often easier for a calm and good companion to understand what is being discussed and to discuss this with you, probably more than once, afterwards because they are in a much calmer state to comprehend what is being discussed and to ask relevant questions for you. The more you get to know what is happening, the more you can feel a bit in control and not entirely lost. As Mez says, a breast care nurse may be a huge help at this time, ask your GP or surgeon. It will take you some time to feel this, but a diagnosis means the start of doing something about it. Without it, the cancer just grows. So you are starting on a recovery. A mastectomy is daunting for anyone, but usually surprisingly pain free, particularly if there are no lymph nodes involved. You may be recommended to have herceptin after your surgery - either an infusion or tablets. Painfree either way. Your treatment will be focussed on reducing, as far as possible, the chance of any recurrence. You will want to think about reconstruction - some do, some don't, it's an entirely personal choice but to help you make it, your surgeon needs to advise on options, when each option is best done and of course costs and, in some states, how long you may have to wait for such surgery. If you are working, you will need some leave for surgery (it can vary a lot, I only took a week off, I'm a quick healer) but you may want more time. It's entirely up to you who you tell - some want to keep the matter confidential (so maybe only your HR people) others are happy to let colleagues know what is happening. The same with family really - most of all, you don't want upset and anxious people fussing about you and making demands at this time. The ones who are calm and supportive are the ones you can best rely on. There will be a time when all of this will be a faded recollection. Hard to imagine now, but many have been through this, just as confused and unsure as you, and not only survived but lived well. Keep looking forward. Best wishes.5Views3likes2CommentsRe: Letrozole
Hi Kezzagal I did a full ten years on Letrozole - five years was recommended at first, but by year four my oncologist (good on research, cautious unless results are verified and replicable) advised that ten years was probably better. At the time (may have changed) there was no research to indicate whether seven or eight years was better than five (which would have been helpful). I never had joint pain or menopause type symptoms, including hot flushes (I was way past menopause). I did develop vaginal atrophy and Letrozole clobbered my hitherto excellent bone density. To be fair, both of those problems were almost certainly exacerbated by age. Now 80, my bone density is about par for the age group! Also, because my estrogen levels are falling by the hour, I can use topical estrogen cream to address the atrophy. I am getting on for fourteen years post diagnosis, and so far, so good! I suggest, if it hasn't already been suggested, a bone density test to see where you are now before Letrozole changes much. If, like me, your bone density is good for your age, it's a bit like money in the bank - you can afford to lose a bit. Best wishes for your surgery and recovery.34Views1like1CommentRe: Did you have a Mirena in place like me when diagnosed with breast cancer?
I have never used Mirena but the following report may be of interest: Recent studies, particularly from Denmark (2024), indicate a potential 30–40% relative increase in breast cancer risk for users of hormonal IUDs like Mirena compared to non-users. However, the absolute increase is very low, with studies suggesting roughly 14–29 additional cases per 10,000 women over 5-10 years, which is considered a minor increase overall. Key Findings on Mirena and Breast Cancer Study Data: A large Danish study tracking ~80,000 users found a 30-80% relative increase in risk depending on duration, but in absolute terms, the risk remained under 1% of users. Absolute Risk: The actual risk is small. One study found only 14 extra cases per 10,000 women after 5 years. Another estimate suggested 1 additional case of breast cancer for every 7,690 users. Duration of Use: While some data suggest risk increases with duration, others found the risk does not significantly increase with longer use. Mechanism: The slight increase may be due to the progestogen (levonorgestrel) in the IUD affecting the growth of pre-existing, undetected cells. Other Factors: The studies often could not fully account for lifestyle factors like obesity, alcohol, or smoking, which are major, independent risk factors for breast cancer. Risk vs. Benefit: Medical experts largely agree that for most women, the benefits of Mirena (contraception, treatment of heavy bleeding) still outweigh the small increased risk of breast cancer.28Views2likes1CommentRe: Will I be ok?
I too am large breasted. I had a single mastectomy and chose no reconstruction. I use a prosthesis, find it simple and easy. It may take a little while to get used to, but once you do it’s pop it on in the morning and forget. It’s worth a professional fitter first time. I went to Iceland a few years later and found the absolute acceptance of my body in a shared women’s shower room before a hot soak absolutely liberating. No one batted an eyelid. I would have expected such if I had lost an arm, a breast should be no different. Best wishes for the future.192Views6likes0CommentsRe: So confused, scared and teary
Hi Tangerine I had my BC treatment at Epworth (all good) but my partner has recently had complex surgery (some cancers are worse than breast cancer!) at Peter Mac and the treatment, information, consultation and follow up have been extremely good. It is of course a specialist hospital but even so, I have been impressed. I can't advise about reconstruction, but his complex surgery was free - he did have a private room, covered by his health insurance, but he was in hospital for three weeks. You still have to have some details confirmed so now's the time to put together all your questions, as Moomincorn suggests, so you can make an informed decision. I note that, if you have a mastectomy, you would prefer an immediate reconstruction, fair enough too but you may wish to ask what your options are for a delayed reconstruction, if the costs are a concern, allowing you to do that at a later stage when your finances are in better shape. Best wishes.102Views0likes0Comments
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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.Flat Chat - no breast reconstruction
PRIVATE GROUP. This group is a safe space for those considering, actively choosing or not have had a choice to stay flat after a mastectomy. Whether personal decision or one shaped by circumstance, you're invited to connect and share your experience and images with others on a similar path. Information shared is based on personal experience and not intended as medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️Posts may include images of surgical outcomes, which some may find distressing. If you need support, please contact the BCNA Helpline—we’re here for you.
