Hi, newbie here
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@SallyS - so happy for u - fantastic news!! Xoxo0
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Awesome news SallyS
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Thanks everyone. Although I’m grateful being in the clear now, I’m all too well aware I might not be so lucky next time. Just want to thank everyone for their support and help. I hope you all get through this battle and come out stronger xxx3
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Amazing news! Champers time!0
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Fantastic news! Time to celebrate and make sure you do. Xx0
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Thanks everyone xx Looking for a bit of advice now please.., so after being told I had LCIS, the Doctor went on about the possible next steps I could take to reduce my chance of getting BC down the road. He mentioned Tamoxifen and also more drastically a mastectomy as a preventative but of course he also said now that I’ve had screens, and now having 12monthy mammograms from now on, my chances of catching anything would be early and curable. Now my dilemma is that being my sister had BC at a young age of 43 and with my LCIS, he suggested seeing if my sister would get gene testing done and if positive, then getting tested myself. He said atm my chances of getting BC are currently 20-25% but if I carried the gene it would be more like 50%. What would you do? Would you just carry along with life and be vigilant in getting checked or go down the path of genetic testing and then decide from there? The Doctors had their meeting this morning discussing patients have called to see if I would come in for an appt to discuss my options.... I’m just so torn! I’m scared of the side effects of Tamoxifen, at 42 I feel I’m not ready for all that comes with it... I’m celebrating that I’ve been fortunate enough to have a clean bill of health but at the same time I’m pondering of what will come next... arghhhhh0
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It's all quite terrifying this decision making isn't it. I'm probably not the best to help answer your question so I'll leave it to others. I think it's a good idea first to discuss options with the doctor and get an understanding of what they suggest. Do you have a breast care nurse to help break down all the jargon and give you a broader understanding?
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@SallyS I think all you can do is try it and see if you can manage as it seems everybody’s reaction is different.
I too was terrified by hormone therapy- because I am postmenopausal I was put on an Aromatase Inhibitor called Letrozole. Yes there have been side effects - hot flushes , joint pain and more worrying a big jumpin my cholesterol plus bone thinning.I also think it can bring on the blues.I have been on it 10 months nearly and been managing ok.
I walk for an hour daily which helps with my joints - I can walk thru pain I started with within 15 minutes and the release of endorphins helps with how I feel. On the odd occasion I miss a walk I really notice the difference.My oncologist recommended I take Krill Oil tablets which are much stronger source of Omega 3 than fish oil for my joints and I think it also helps my cholesterol.
Bone thinning is a big worry asI started with osteoporosis and an osteoporotic fracture.I have 6 monthly Prolia injections to counter this as well as 2 Caltrate Bone and Muscle Health tablets.I also do a light weights exercise class twice weekly and hope it with the walking will help counter bonethinning.
To me Hormone Therapy is my best chance to avoid a recurrence and so I try to work around problems that occur. I did also hear at the outset that the body can adapt in many cases after a while and touch wood I think mine has.
Wishing all the best and doubtless others on Tamoxifen will give you their thoughts too. XO
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If it was me Sally I'd want to know the genetic details. But this is an intensely personal decision.
My sister was the second person in my family diagnosed with breast cancer, after my mother. She had the genetic testing done; I know she was influenced in this decision by the two females in the next generation, her daughter and mine. No new tests had been developed between her death (from BC) and my diagnosis. I had a long chat with a geneticist at the Peter MacCallum Familial Family Centre who later sent me a report. The girls are advised to commence surveillance at 30.
The BRAC1 & 2 genes are the most common genetic link to BC discovered so far. Of everyone who develops BC, 3% have these genes.
There may be insurance ramifications if you have genetic testing done. You can always go and have counselling with them before you do or don't get tested.
Don't feel pressured, do your research, listen to your gut. Make the decision you can live with. K xox1 -
i was thought to have carried the brac1 gene from my fathers side...but fortunately didn't. My half sister (same mother) had breast cancer and so has her daughter. My sister unfortunately died from her bc but my niece is still cancer free 14 years on after the same aggresive treatment I had. She was in her early 30s when diagnosed with 2 young children.
Because of my family history I'd been having mammograms since age 40 every year. At age 51 I found a lump....5 weeks after a clear mammogram. So....even knowing where the cancer was it was invisible. I had an aggresive es+ her2+ grade 3 cancer...stage 1. I was very fortunate to have found it before it had spread...and this was purely due to location. I try not to imagine what would have happened otherwise.
I chose a bilateral mastectomy and reconstruction at my surgeons recommendation . We have as yet no identified gene. My niece chose the same. And although treatment might seem drastic...the alternative can be risky if undetected. Chemotherapy is no walk in the park, nor is herceptin if cancer develops...I had heart failure from herceptin. Under the new pbs guidance I would have been offered tamoxifen before cancer developed and I would have seriously considered it. You can always stop if effects outweigh the benefit.
Ask also about your breast density, if ultrasound should be added and possibly the new 3d mammogram. Ask about your genuine risk of having breast cancer in your lifetime , knowing the stats can really help.
I know it is a difficult decision but you need to outweigh risks with benefits. You have time to find out more. The decision doesn't have to be made in an instant. Tamoxifen can also give you time to consider long term options.1 -
It is a personal decision. My sister was diagnosed at 32 and survived 13 years. Unfortunately, I don't know what type of bc she had, and at the moment it is unclear whether my only sibling is enough to access the free genetic testing and I'm not in a position to pay for it. I have 3 kids, including 2 girls so that is a concern. I had a single mastectomy in January and, although I've been told by both surgeon and onc (both of whom I trust) that I will be carefully monitored for a recurrence in the other breast, I still feel deeply uneasy about this and wonder too, if there is a genetic link, would their advice be different. Because I had lobular cancer, I never felt or noticed it but was picked up on a screening mammogram. It was barely visible but turned out to be twice the size they thought and had spread to 3 nodes when it seemed there was no indication of this.0
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Hi again ladies, so 15days post lump removal surgery and although my wound has healed great, I feel pain directly bellow my boob over my ribs. Is this normal? I wondered whether it may have been because I have been slumped on my lounge and maybe my bra has just rubbed on it or wether it could just be from having muscle, tissue etc moved around and it’s resettling? Been this was since Mon-Tue. If not better, I’ll be calling the breast care nurse or Doctor but thought I’d ask her too. Thanks xx0
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It could be where the drain was - do you have a small scar there? Otherwise, it could also be where the muscle is being pulled if you have any restriction in your armpit when you stretch your arm (cording?). It's hard to know as the signals can get a bit scrambled if you've had node surgery.0
