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greenfairy
Member
since
08-01-2022
18
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10
Hugs
22-10-2022
10:28
1 Hug
Hi, I got my result and updated the thread, I am one of the poor metabolisers and won’t be taking tamoxifen as a result. More details in the thread 🙂
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22-10-2022
10:28
Hi, I got my result and updated the thread, I am one of the poor metabolisers and won’t be taking tamoxifen as a result. More details in the thread 🙂
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22-10-2022
10:26
Hi, so I finally got my results back. After I’d ordered the test I found 70-80% people are expected to metabolise tamoxifen normally, (https://www.ncbi.nlm.nih.gov/books/NBK247013/) so if I’d found this before I likely wouldn’t have ordered the test but my sample had gone off anyway. As it turned out I am in 6-10% that are poor metabolisers. Based upon that and co-incidentally lining up with a visit to a breast surgeon at the Royal Marsden, they stated for me, it was tamoxifen or nothing based on my results, (although I can check this with oncology). For DCIS, tamoxifen is not routinely given, but due to the small invasive element they’d found, they’d recommended it for that. At my age, early forties, the surgeon said the alternative of an AI and ovarian suppression would impact my life. So that’s decided it for me, the result tells you how poorly you’d metabolise and mine was the poorest. For me, I am glad I checked prior to starting adjuvant therapy. This is in relation to my results - info via above link does also state that for poor metabolisers the dose can be doubled or more, with endoxifen measured. Or an AI used with ovarian suppression. The above link equally states that some studies do not think there is a genetic implication on metabolism of tamoxifen or look at other genes. So different opinions but it is something I found, followed up and these were my results. We are all different, hope sharing this is useful.
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19-10-2022
08:44
1 Hug
Just sharing this resource as I wish I’d known about it before surgery - Breast Advocate. Input what is important to you along with results and it will tell you your options for lumpectomy or mastectomy and reconstruction. I picked this up from a surgeons website. https://breastadvocateapp.com
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13-07-2022
08:49
2 Hugs
Hi, I’ve discovered that you can have a tamoxifen sensitivity test / assay, that looks at your genetics and whether certain drugs could benefit you, in this case tamoxifen. The Pink ribbon foundation partnered with Myogenes on the hereditary cancer test, so I also found they had a pharmacogenetic test which lists tamoxifen. Cost for this test is £450 plus vat & covers nearly 300 drugs. https://www.myogenes.com/our-tests/the-pharmacogenetics-test/ The BCN helpline gave me the contacts for paternity for life, who offer a test from genomics (Australia) in the U.K. You can request the test on line via the pharmacogenetics test but you pay one fee for tamoxifen specifically. https://www.paternityforlife.co.uk/services/clinical-tests/pharmacogenomics-drug-response/ So £249 for the 1 test, the test that is generic covers 40 drugs but tamoxifen isn’t included in their 40. I have been putting off taking tamoxifen for a few months & have now ordered the test. Myogenes said it’s rarely ordered on NHS but some private insurers will pay apparently. Hope it’s of interest to the wider community.
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28-04-2022
08:43
Just a bit more info on 3d implants due to market by these 3 companies in 2025 - Healshape, Lattice, Bella Senno, all creating tissue scaffolds to increase fat retention from transfer. Hope that’s useful to anyone else looking. Also Collplant, but they are yet to trial.
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28-04-2022
11:43
Hi lucky1, Sorry for the delay, but just wanted to say thank you for your reply and the contact of Ms Jackson. I’ve been in touch and am following up. The lipomodelling to me seems the reconstruction of choice, it’s your own, but doesn’t involve tissue donor sites and if they can increase the retention rates, then this is even better. Thank you for sharing your experience with me., this forum has been so helpful. Many thanks, greenfairy
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12-04-2022
08:21
Managed to research this one a bit more - found one main surgeon mentioned by someone on this forum Eva Weiler Mithoff in Glasgow. Also found surgeons under “fat transfer for breast reconstruction” under Circle group (formerly BMI). Over 80 were on there. Like most options it might not be for everyone, but interesting that the 3D implants have been designed to help structure the fat providing up to 95% retention, the implant then dissipates over the next few months/years leaving natural tissue. They think this will replace traditional silicone options over time.
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05-04-2022
06:01
1 Hug
Hi, any of you ladies had successful reconstruction whilst having pectus excavatum or a funnel chest? Didn’t really notice how pronounced mine was or the associated rib flair, until one breast had gone via the mastectomy. Would welcome your experiences. Thanks
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05-04-2022
05:59
2 Hugs
Hi, Long story short, I had a lumpectomy with licap + complications followed by a simple mastectomy 2 months later. They would not reconstruct at the time. I’m now considering less intensive forms of recon - for instance no one offered partial implants or lipo filling after the lumpectomy… This time, with the C dealt with, I’m considering exclusive lipofilling which has been done in Paris with great results, but also noted a few ladies mention they had it in the U.K. but I’m not sure where? If any one knows can they let me know please? Also 3D printable implants coated with your own cells from France on hydro gel, which later dissipates once colonised with your own cells. Again does anyone know of this in the U.K.? Thank you x
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22-03-2022
05:16
Hi, Ive been looking at recent results from a hospital in Paris and didn’t know if anywhere in the U.K. had reconstructed with just lipofilling. Could I ask which hospital or surgeon this was at all? Many thanks Greenfairy
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13-02-2022
06:45
Hi, thank you for your reply, it’s been a challenging time for sure. I’m not big 34B/36C so the reconstruction as it settles is already smaller than the other side. It makes sense, I’ve read a recent letter again and picked up the focal point was on a medial margin, so with two areas now I guess there isn’t much alternative. It’s a shame because of the complications that they won’t reconstruct at the time. Thank you, am hoping it is more straight forward this time, and hoping this might be the last surgery. What has your experience been? Did you have 1 mastectomy, and any reconstruction? It’s such a lot to get your head around. Best wishes x
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13-02-2022
06:40
1 Hug
Hi, thanks for your reply, I’m sorry to hear you have had to do this twice. I was a 34B / 36C most recently so they can’t take much more and reading a recent letter again, it’s focal point was found on a medial edge. So I guess I can’t see how they could save it, difficult to face when they won’t be reconstructing immediately due to the complications I had. I hope you’re surgery goes well and they can conserve. At least we have each other to ask and lean on each other. Thank you, best wishes.
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05-02-2022
06:24
1 Hug
Hi had a WLE & Licap mid January 22. I had some complications (see other posts) but have just been given pathology results. I had clear margins on all but one side of the lumpectomy and now they are recommending masectomy. They originally estimated 6cm DCIS which came out at 5.5cm but they found an additional 3cm. Also a small 3mm cancer. I’m struggling to reconcile masectomy yet as I’m only 3 weeks in recovery from the first op. Has anyone else had a similar experience? Am wondering if I can do this with radiotherapy and haven’t had any other CT, PET or ultra sounds on that side (now recommending node biopsy as well). Any experiences welcome. Thank you. Xx
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05-02-2022
01:14
Hi, I have a vascular disorder abs had complications but may required further surgery - can I ask where the specialist centre is? Thank you.
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29-01-2022
05:11
Update: if anyone develops what looks like an abscess or peak on their breast… it can break through and cause a hole - I had no drain, building seroma and wanted aspiration. It wasn’t done and burst so now I’ve got a further wound to heal. Wearing a wound bag and still not settling.
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27-01-2022
07:25
1 Hug
Hi, I had a WLE and a Licap reconstruction 2 weeks ago, my pathology report still isn’t back. Surgeon has advised extra staining is required. I was only identified as having DCIS (6cm), has anyone else had similar and what was your experience? Was the extra staining just routine? Thanks
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21-01-2022
11:44
I had a WLE and Licap. I’m about a week in from surgery and still in a fair amount of pain, I can barely bare to touch the area and haven’t even washed off the surgical marks. It took me a few days to work out the dosing regime for pain killers and everything is so tight and sore, I’ve got some fluid rolling around but been told it will settle naturally. How long was it for people who have been through same or similar surgery, for you to feel yourselves? Surgeon has okayed it so there are no issues as far as I know. I’ve never had surgery before either which hasn’t helped.
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