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Extensive DCIS with ITC
hi, I was diagnosed with high grade DCIS following a MRI late last year (showed as ~2.5cm), not picked up on US or mammogram. I had a lumpectomy, which didn't get clear margins at 7.5cm so based on that & the initial pathology (HR negative) I elected for a mastectomy which turned out to be the right choice as they found a further 8cm, so it was extensive. But they also found ITC in one of the sentinel nodes, which I believe is fairly rare with pure DCIS. They haven't found any evidence of invasive cancer elsewhere in the breast tissue. I'm waiting to see what (if any) further treatment the MDT is going to recommend, but it seems like it can go 2 ways (treatment or monitor only) and the guidelines for this vary by country. Wondering if anyone else has had this diagnosis and what treatment option they went with?
Did you have a Mirena in place like me when diagnosed with breast cancer?
I was diagnosed with breast cancer 3.5 months ago and had a double mastectomy 3months ago. I am 44 years old. I started doing some research as a number of people I know with breast cancer who were young also had a Mirena. There is new research coming out of: -Europe that indicates that there is a 40% higher risk of breast cancer if you had a Mirena, and -Germany that shows that the Mirena can change hormone levels in the breast based on scans I had breast ultrasound scans that show I did not have breast cancer just before my Mirena was inserted 5 years ago, and that it developed post Mirena insertion. I had no genetic factors (based on testing), and no risk factors for breast cancer. It seems highly co-incidental. I also looked up the FDA documentation for Mirena approval and it states that "Spontaneous reports of breast cancer have been received during postmarketing experience with Mirena. Because spontaneous reports and voluntary and from a population of uncertain size, it is not possible to use postmarketing data to estimate the frequency or establish causal relationship to drug exposure..." I am keen to connect with other women who had a Mirena in place and then were diagnosed with breast cancer. If this is you, please respond to this post- I would love to hear your story!
Learnt some new. Re HPV
I have been informed that my cervical cancer removed by cone biopsy 37 years ago has come back to life but not in the cervix of all places I never imagined appeared as pre cancerous changes to part of my anus. Through research since finding out is that being immune compromised can trigger the dormant virus to get moving. Didn't even know it could. I suppose if chicken pox can come back as shingles not so surprising. Just not talked about Seeing as my neutrophils rarely go above 1.3 not surprising I suppose. Here I was thinking it was a haemorrhoid. Probable minor surgery in February. Of course the specialist surgeon has to talk to oncologist glad they know each other well.
Starting radiation
Hello all, I will be starting radiation tomorrow. I had a complete pathological response after 6 months of chemo and a double mastectomy with complete axillary node removal and DIEP recon. But since I am young and had TNBC I was advised to have radiation to mop up strays as they say. I am terrified of radiation and always have been even more than chemo. So I would like to hear from anyone who has been through radiation. How was the experience for you? Especially if you had it to your sub-clavicular nodes (neck). Do you still have scars? skin changes? tightness?lymphoedema? Any tips or tricks? I will be having a total of 15 sessions (40Gy). Any advice or stories welcome :) Thanks.
Anyone had TC chemo?
Hi, I am likely going to start chemo possibly next week. It’s will be TC for three months. I am very worried about it of course. I would like very much to reduce my risk of peripheral neuropathy and wondered if there’s any advice on best things to use for hands and feet. Does anybody have any other advice or experiences from this sort of chemo?Radiation, driving and fatigue
I was hoping to hear about any experiences of driving and fatigue while undergoing radiation. I've been told to be aware of fatigue. The radiation oncologist and nurses have raised concerns and eyebrows when I've told them it's a one hour drive door to door, so two hour round trip x 15 sessions. I'm also maintaining hope that I can continue working part time in an outdoors job where lately I'm doing 14k+ steps a day. Ultimately I'm going to see how it goes. I'm not going to break myself. If I get too tired then I have backup people to help with the driving (public transport isn't an option around here), reduce my activity at work or take leave, or get accommodation near the hospital for some of the sessions. I'm wondering if some people have got through radiation without fatigue? Or if fatigue has occurred has it affected driving? And how fast the fatigue appears - might you have been okay one morning and zonked in the afternoon?Radiation post DIEP
Hello all, I am exactly 4 weeks post double mastectomy and DIEP (including complete node clearance) which I had after 6 months of neo-adjuvant chemotherapy. I had TNBC in my right breast with 3 nodes involved on the same side. My pathology report said I had clear margins and a complete pathological response 🙏 I have now been given the option of skipping radiation if I want to. A new study (B-51 study) published last year found that patients with complete pathological response to chemotherapy and a double mastectomy don’t benefit from radiation therapy. My question is has anyone skipped radiation or was given the opportunity to skip it and chose not to? Also, has anyone with a double mastectomy and DIEP done radiation and what were the side effects on the breast? Lastly, has anyone received radiation in the neck region and what were the side effects like? Difficulty swallowing? My radiation specialist suggested if I choose to go ahead with radiation she would recommend the sub-clavicle nodes in the neck (along with breast and armpit) as they’re the only nodes I have not checked surgically. Would be keen to hear anyone’s opinion or lived experience. Thanks 😊
Extent of numbness following double mastectomy
Hi! I’ve recently been diagnosed with early stage breast cancer and require a double mastectomy. I’ve been trying to come to terms with the need for this treatment. I’m wondering if some of the lovely survivors out there would be able to tell me how it feels post mastectomy? How much of your chest is numb permanently? Does PMPS become mild long term?Radiation Side Effects Broken Skin Tips?
Hi everyone. I am on day 8 of post radiation and the skin in my under breast and just below breast in the crease has peeled and is basically red raw. Is truly distressing and awful. I have large breasts so it's so hard to manage due to the weight. I am putting on StrataXRT and trying to let it dry by lifting the breast up but when working and walking around it's so painful and is so red and sore. I wanted to ask you all if you have any tips on this and how long it takes to stop weeping and breaking off? I got very upset about it as is so horrible and will be speaking with my nurse but wanted to reach out to the community to ask for any advice or similar situations. Hope I haven't over shared on the details of the horribleness.
