After a thorough evaluation by Christinakliniken at Sophiahemmet — under the care of Dr. Eva af Trampe and Dr. Michael Szep — I was reassured to learn that the lump I had was a tumor, but thankfully, they said it was benign and harmless.
That confirmation eased my anxiety about cancer and its possible consequences, allowing me to move forward with trust and relief.
As winter 2019 arrived, I found myself reflecting on Christinakliniken; two summers had passed and gone without the promised follow-up appointment.
The silence felt increasingly disconcerting, leaving me in a state of uncertainty about my health.
Each passing season deepened my concern, and the lack of communication only heightened my anxiety.
When my GP referred me for a second opinion at St. Göran's Oncology Clinic, I was finally correctly diagnosed:
The tumor was, in fact, malignant breast cancer!
Due to the doctor's egregious negligence and inaccurate evaluation and diagnosis, the tumor—which was always malignant—was allowed to grow and spread.
These have not only caused my life to change completely and handicapped me with constant pain in my knee, which severely limited my mobility, and I am now forced to walk with a cane, but also my arm has lost much of its range of motion, and I can no longer put pressure on my right thumb.
To make matters worse, I developed a frozen shoulder and a chronic seroma following the surgery.
These are just a few of the lasting consequences of what I can only describe as criminal medical negligence.
That single misdiagnosis set off an avalanche of devastating changes in my life.
The non-action of these doctors and their clinic put my life in danger, indicating a profound disregard for my well-being.
By making me believe that they had everything under control and would send a follow-up appointment that never came, they allowed my cancer to metastasize
The delay and misdiagnosis severely limited treatment options, necessitating immediate and drastic intervention.
At the end of 2019, I was forced to undergo a mastectomy, this procedure marked the unavoidable start of a constant health struggles and a change of life journey and profound physical alteration.
A direct, severe, and debilitating aftereffect of the surgery necessitated by the delayed diagnosis is the creation of a chronic seroma and a frozen shoulder.
The chronic seroma site, where my breast once was, remains a source of constant, intense pain.
My left arm is also severely impaired; its mobility is limited, and every movement brings pain.
This seroma has persisted for 6 years and requires biweekly drainage.
The condition has significantly handicapped my left arm, limiting mobility and causing pain with movement.
Soon, it is going to be 2026, and I have lost years of my life struggling with constant health complications that impact my daily life. Some who still pose serious, life-threatening risks. In this blog, I share my experiences.
The delays in treatment caused by the negligence of the doctors have only compounded the challenges I’ve encountered following my mastectomy surgery.
postmastectomy pain syndrome, frozen shoulder, lymphedema, Chronic seroma, and nerve pain following mastectomy is of significant concerns in the aftermath of surgical intervention.
Each day brings side effects, symptoms, and new struggles. I often find myself questioning if there’s light at the end of this long tunnel.
I have been taking antihormonal pills and need to continue them for another five years for safety.
These pills cause severe side effects such as hot flashes, joint and muscle pain, fatigue, weight gain, and vision problems. They have already affected my knee and thumb joints and continue to trigger Carpa allergies.
These conditions have not only brought me unbearable physical pain that has weighed heavily on my emotional well-being, leaving me to grapple with the accompanying trauma and distress.
Each day, I strive to find a way through this struggle, determined to reclaim some sense of normalcy in life.
The only method I have found to alleviate the persistent pain from the seroma and the discomfort associated with Post-Mastectomy Pain Syndrome (PMSP) is to undergo a draining procedure every ten to fifteen days.
This process provides only temporary relief, reducing the pressure buildup, but it never fully resolves the pain I experience.
Every time I have to endure the trauma of having a long needle inserted into my chest, where my breast was removed, it produces a physically and emotionally excruciating experience.
The memories and sensations associated with that area are incredibly painful, exacerbating my anxiety around the procedure.
To make matters worse, due to my Carpa condition I’m allergic to nearly every painkiller available on the market.
This unfortunate situation leaves me with very few options for managing my pain, making the draining procedure my only viable source of pain relief today.
However, although regular drainage of the seroma provides temporary relief from the sharp and persistent pain it causes, unfortunately, this procedure does not tackle the considerable limitations I face as a result of the second outcome of the mastectomy surgery.
As a direct consequence of the surgery, my capacity to raise my arm has been severely diminished. Every attempt to lift my arm results in intense, excruciating pain, rendering even the simplest movements exceedingly difficult.
I experience constant back and shoulder pain, along with muscle spasms around the surgical area.
Currently, I am using Versatis 700 (April 2025) medical patches for neuropathic pain.
While they provide some relief for my shoulder, I am still unable to raise my arm.
Seroma:
A collection of clear fluid at the surgical site is known as a seroma. While seromas are common and usually resolve on their own, larger or uncomfortable ones may need to be drained with a needle and syringe.
It's very uncommon for a seroma after a mastectomy to last over one year. Most seromas resolve within weeks to a few months as the body reabsorbs the fluid.
Seromas are common complications of surgeries and vary in size; however, these fluid collections often cause aesthetic deformity. Most seromas are harmless and will resolve on their own, but in some cases, they may become infected and lead to further complications.
A seroma is the buildup of fluid in a tissue or organ, often developing after a surgical incision or after the tissue has been removed. It can also occur following injury and trauma to an area, such as a car accident. Seroma's fluid, called serum, leaks out of damaged blood vessels and vessels of the lymphatic system, which causes a lump that looks like a small or large cyst.
Seroma formation may be associated with an increased risk of infection and breakdown of the surgical site.
I developed a seroma after my mastectomy at the end of 2019, and after almost 6 years, it continues to fill up and needs to be drained every 10 to 15 days. I have yet to meet a doctor who has dealt with a seroma lasting more than a year.
A frozen shoulder causes the capsule surrounding the shoulder joint to contract and form scar tissue that prevents the shoulder bone from being able to move freely in the socket. The shoulder literally seems to be “frozen” in place, which is why it is called a frozen shoulder.
Frozen shoulder, known in the medical community as adhesive capsulitis, is a condition that causes severe, painful restriction of motion in the shoulder joint.
In addition to making everyday activities very difficult, the frozen shoulder swelling and stiffness have progressively worsened over time and interfered with my sleep.
There is no clear explanation for why frozen shoulders occur. However, if the shoulder is immobilized for a long period, such as during surgery or after a fracture, it's more likely to happen.
The exact cause of postmastectomy pain syndrome (PMPS) isn’t known, but the most common theory is that it happens when a nerve—or nerves—becomes damaged during surgery.
If left untreated, PMPS may not only be painful, but it may also affect the use of the arm and its range of movement and also affect mental health.
Frozen shoulder is twice as likely to develop in women than in men and typically affects those between the ages of 40 and 60.
This painful condition can last for years.
These are some of the most commonly reported frozen shoulder Symptoms:
Shoulder pain - usually a dull, aching pain
Pain when trying to sleep on the affected shoulder
Limited movement, with severe pain if it is moved beyond a certain range
Difficulty with activities such as brushing teeth, washing hair, getting dressed
Patients with advanced-stage symptoms may experience:
Neck pain
Upper shoulder pain
Elbow/forearm pain
Neck stiffness
Headaches
Numbness in the hands
A seroma combined with a frozen shoulder and PMPS can lead to severe impairment and pain. As the seroma fills up, its fluid spreads through the damaged lymphatic system. Pain spreads to the chest, axilla, arm, and hand, limiting arm movement and exacerbating the symptoms of a frozen shoulder, and PMPS.
SEROMAS CAN OCCUR AFTER THE FOLLOWING BREAST CANCER SURGERIES:
lumpectomy
mastectomy
lymph node removal
A seroma can also occur after any type of extensive surgery, including the following procedures:
Plastic surgery
breast augmentation
abdominoplasty (tummy tuck)
reconstruction
liposuction
Hernia repair (such as surgery for hiatal hernia)
Abdominal surgery
Seromas can appear about 7 to 10 days after surgery after removing the drainage tubes. The breast area involved in the surgery may have a swollen spot that feels like liquid under the skin.
Seromas vary, but they typically appear as a soft, swollen lump.
Make sure the compress isn’t too hot, and leave it in the area for no more than 10 minutes.
Repeat at least three times a day.
It can take up to six weeks to notice any improvements, but keep applying the compress and let your doctor know if the seroma becomes larger.
Also, too much activity after a surgical procedure may sometimes slow healing. You can usually walk around and do light movement, but refrain from exercise that will stress the incision area.
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In case of acute pain or continued growth, having the seroma drain will provide the best temporary relief.
Because the true etiology of a seroma is unknown, a multifactorial causation hypothesis has been accepted.
However, prolonged drainage is troublesome as it increases the risk of infection and can significantly delay adjuvant therapy.
Although there is evidence for reduced seroma formation after early drain removal, very early removal within 24 hours seems to increase formation of seroma.
Consensus is lacking among studies and trials, with different groups producing conflicting evidence.
Thus, seroma remains a threat to the patient. Recurrent transcutaneous needle aspiration remains the only successful management.
Based on this, inhibiting the inflammatory response might decrease seroma formation and improve the quality of life after mastectomy.
Sometimes, intravenous steroids are given after surgery to prevent seromas by inhibiting the body's inflammatory response.
Research shows mixed results on the efficacy and safety of steroids after surgery, especially because they may cause side effects like immunosuppression.
What does it mean to be immunosuppressed? Suppression of the body's immune system and its ability to fight infections and other diseases.
A high single steroid infusion (40 mg Depo-medrol) IS SUPPOSED TO INHIBIT THE INFLAMMATORY RESPONSE.
Having suffered from a seroma for over six years, I have tried everything; however, nothing has worked, and needle aspiration remains the only treatment that helps relieve the pain and discomfort.