Belly button after DIEP
Hi Network, I’m 8 weeks post-mastectomy and DIEP reconstruction following a DCIS diagnosis. Overall, recovery is going well—except for my belly button. I developed an infection 10 days post-op, which landed me back in the hospital, and since then, it just hasn’t felt right. It pulls and hurts when I move, especially on one side. I’ve raised my concerns with my surgeon, breast nurse, and physio—they all say it’s normal. But you know that feeling when something just doesn’t seem right? I’m reaching out to see if anyone else has experienced this—does the belly button just take longer to settle during recovery or should I get another opinion? Thanks in advance x
Joint pain, muscle stiffness
Hi all I am 5 weeks post radiation for invasive lobul ar carcinoma. 6 lymph nodes removed. I am on letrizole. I started getting joint pain and muscle stiffness in my knees shoulders hips and muscle tightness. When I mentioned it to radiation doc she said it would not be from radiation to breast area. Has anyone experienced similar symptoms. I had a mastectomy. No chemo.
Struggling with Tamoxifen side effects
Hi All , My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all! I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old. I am struggling with: Hot flushes Aching legs Struggle to keep weight off no matter how much exercise i do moodiness loss of libido fuzzy headaches generally changed me to feeling crap daily Interrupted sleeping patterns Constantly going to toilet I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects. I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%. I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop. Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible? Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol Christine xxMy right breast doesn't feel the same anymore ... Is this the new norm post lumpectomy, chemo & rad?
I had my lumpectomy in June 2017 and lymph nodes in right arm removed in July. Chemo stopped at Xmas and rad in March. Now I am just on Herceptin until Oct. I have been noticing changes over the past few months that are more apparent now. I see my breast physio regularly for massage and exercises for the scar tissue in my right arm, side and breast...causes pain and cramping. I noticed a while ago that in the bath my right nipple doesn't get cold i.e. erect. I don't mind a lazy nipple, but have also noticed my areola area feels rubbery and not soft like my left side. My breast physio has me massaging the area to help with pain and breaking down scar tissue. The onc says it's unlikely the scar 'lump' or little ball of scar tissue in my right breast will break down. The breast physio says from her experience, wait and see! Has anyone else had changes such as lazy nipples and rubbery areola ? I'm not in a relationship but wonder if I was would it feel different or strange to someone else. Oh, and my dentist tells me I have no saliva so need to use a special toothpaste and mouthwash...this is from the rad. Hmmm still wading through the collateral damage. XxxAbemaciclib Verezenio side effects
Hi Ladies, I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence. Originally diagnosed with bi-lateral early breast cancer back in March 2023. Had a small 1cm triple negative tumour, and a larger (5cm), more aggressive (grade 3) oestrogen positive tumour with lymph node involvement. After initial breast reduction to remove both tumours and additional auxiliary clearance, I had 6 months of chemo, plus radiotherapy to both breasts. I managed to keep fairly positive throughout these treatments, and while at time a struggle did manage to work albeit at reduced pace throughout. Just as I finished radiotherapy my oncologist recommended abemaciclibb as part of a trial that is showing reduction in recurrence rates of around 6%. I’ve only been on these for 5 weeks, and while the side effects are manageable, they are not a lot of fun - diarrhoea, fatigue, vertigo, and just generally feeling unwell. Hot flushes and insomnia with the hormone therapy which again are manageable and on their own no big deal, but the combination has me exhausted. I was soooooo looking forward to end of my active treatment and getting some energy back, getting back to working full time aswell, but now with two years ahead of me on this regime, I am wondering if it is worth it. Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time. Thanks Jenni
Breakthrough bleed after first dose???
Hi all, after finishing 15 rounds of radiation therapy, i took my first dose on tamoxifen at 10am this morning, only to develop a breakthrough bleed by 5pm. I am perimenopaul and my last period was in Nov 24. I will be contacting the Doctor tomorrow but has anyone experienced this? Do these bleeds stop on their own? Thank you in advance.
Radiation Fibrosis Syndrome
Hi everyone!!!! I was diagnosed with BC last year. I had DCIS and IDC......I had conserving surgery partial mastectomy with a flap reconstruction done......I had my yearly follow up in June this year and the mammogram and ultrasound picked up a mass....I had the biopsy straight away and it didn't contain any cancer cells......It was necrotic tissue. So I had to go back to Breast surgeon 3mths later which was last week....She said I was fine....I saw my radiation oncologist the day later for my routine check up......He told me I have radiation fibrosis syndrome.......I have pain daily and have trouble with the tendon at the front of my arm pit and pain in my arm, breast and left side of my breast. He told me it wont get better but will probably get worse and if I can't handle the pain he will give me medication which settle down the inflammation in the under lying cells which were damaged through the radiation. I was wondering if anyone out there has had this and if anyone knows if I should just have the whole breast removed.....I would be grateful to hear from you.....I don't like the idea of living the rest of my life with daily pain and restricted movement in my arm. Thank you :)HER2+ ER+ - huge side effects
Hi I was diagnosed with HER2 positive and estrogen positive breast cancer in October 24 Am having chemo / Herceptin - perjeta weekly until 20/1 then prob surgery end of February. As I’m older 73 am so worried about survival rates and if the treatment will work I’ve had no ultrasound or anything to see if the tumour has reduced and I have a satellite cell next yo my tumour - multi 3 breast cancer it’s been terrifying to say the least and still in shock and have had huge side effects - numbness - chemo rash and sores all over my body / hair loss despite having the gold hat and diarrhoea
Exemestane & cardiac symptoms
Hi all, Apologies if this has been covered before but I am hitting a brick wall with my oncologist who has denied any knowledge of problems with taking anti hormone treatment such as exemestane and it aggravating pre-existing hypertension & heart palpitations. I stopped taking exemestane and my blood pressure average dropped 20 points and the bad headaches also stopped but my oncologist doesn’t think the drug caused the blood pressure problems. All they want to do is push another drug but I don’t want a repeat as it adversely impacted my ability to work & I didn’t feel safe as I had a hypertensive event whilst exercising. Has anyone else experienced similar problems as I can’t believe I am the only one to have this happen to although my oncologist said she had “ never heard of this before” or know of any current studies or literature I can show my oncologists? I feel like I’m being fobbed off and being labelled as an inconvenience as not wanting to tow the easy treatment line. Being in a regional public health system is also probably not helping with the quality of care & concern. Any suggestions would be welcome. Thanks
