I saw the oncologist yesterday to discuss radiotherapy and hormone therapy.The plan for radiotherapy is on hold ATM because I have an ongoing issue with a seroma on the breast and underarm.
During the meeting she said she would give me a prescription for Letrozole, I told her I wasn't happy to start the meds without first having a bone scan and mentioned I was concerned about side effects of the meds, alerting her to the fact that previous blood tests had indicated I had slightly raised liver levels and that I had osteoarthritis and bursitis in my left hip.
The plan now is to deal with the seroma, finish radiotherapy and then discuss hormone therapy in further detail.
I got the distinct impression the appointment was time was limited and that she hadn't read my medical history!
Has anyone had a similar experience?
Written by
LindaLittleBear
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I’d have thought - I’m no expert - that arthritis and bursitis (both of which I have and indeed I had arthritis at the time of my breast cancer discovery) could be ignored as far as radiotherapy is concerned. Seroma I don’t know. By “bone scan” do you mean a scan for osteoporosis?
Hi, thks. Sorry if I wasn't clear the arthritis and inflammation doesn't have any affect on the radiotherapy., just the seroma. Though could be impacted by the hormone therapy, in that it can cause further bone pain, which the consultant agreed with. Yes, I've read that before starting Letrozole the patient should have a bone scan to check bone density as Osteoporosis can also be a side effect of the Letrozole.
Interesting I received a message this morning confirming I had an appointment for a liver ultrasound, early May. I'm assuming the consultant has given my concerns some thought.
Alas having had both seroma drained yesterday they have again filled up. Ho hum.
That's good to hear, I hope you continue to be well on the Letrozole.I think my main issue with the consultant was she was pushing to issue a prescription for the Letrozole without discussing checking bone density and it was apparent to me that she hadn't read my medical records as she seemed to be unaware I was already on 80 mg of Atorvastatin and had slightly raised liver levels.
I'm sure things will work out I just want to make an informed decision and not feel I that am being rushed/pushed to accept medication that could possibly impact other medical issues I have.
My consultant referred me for a Dexascan because she was putting me on Letrozole so definitely get that scan. As others have said, it gauges bone density.
I also had a dexascan while I was actually taking letrozole. I was prescribed a calcium supplement, which I need to take daily even now after I have finished letrozole. I suppose you have to weigh up the pros and cons of hormone adjuvant therapy. I personally found it worthwhile as I had a high grade of cancer and I do not want it coming back. Take care
Thank you. Agreed we have to make an informed decision. I haven't ruled out the Letrozole and will eventually have a full discussion with the Consultant to weigh up the pros and cons.Take care!
hi, I had a seroma which was drained a few times and eventually settled down well. I went onto letrozole after chemo and radio and have six monthly zometa infusions for the years to strengthen bones to counteract the effects of the aromatase inhibitor medication (letrozole) which I am on for 7.5 years (ie preventing osteoporosis). I am 18 months in and my bones are doing ok. Side effects of letrozole have been joint pain in ankles, knees, wrists. Manageable but also I started acupuncture 6 months ago and it has made a tremendous difference to my internal energy, liver, kidney, spleen and my aches are almost all gone. My oncologist said a lot of her patients have found acupuncture beneficial. On a side note I changed from letrozole (which the oncologist said was the gold standard treatment) to Anastrozole about 8 months ago as I was getting chest pains. She has never come across this before in her career but tachycardia is a very rare side effect. It may have had nothing to do with the meds but I have had no problems on Anastrozole. The joint pains have been exactly the same! So in summary I would suggest you enquire about the bone infusions (zometa/zolodronic acid) and look into acupuncture perhaps.
I have mets in my bones so I was already on denosumab with adcal before they started me on letrozole. When I reported joint pain I was referred to rheumatology and they did a dexa (bone density) scan to check denosumab was working as it should be. They had no worries about letrozole. Of course I had no history of arthritis etc so I understand your concerns.
At my hospital (Royal Marsden, London), they give you Zometa infusions for three years to counteract the likely reduction in bone density due to Letrozole/AIs. One must sign off on the risk of osteonecrosis of the jaw with Zometa, which I decided not to take. Zometa also gives flu-like symptoms.
I did not have your experience with time constraints but was out I. Letrazole due to my diagnosis of HR/PR positive. I stopped meds to have exchange of expander to implant and now have seroma in breast and armpit too may I ask how long you’ve had the seroma? What are you doing g for it? Thanks in advance for any advice on this I have had fluid leaking from a small opening in my armpit for a month now on and off
Hi, thank you for your reply. I had a lumpectomy and sentinel lymph node biopsy on the 25th February. Two days later I was back for surgery to have a haematoma removed.
The swelling to the breast continued and then under the arm. I've been to the clinic several times and now had each area drained 3 times.
I know these issues are common. However I can't start radiotherapy until the swelling is reduced/ under control.
The fluid was drained on Friday but the underarm wouldn't fully drain. There is a hard lump in that area. I've been told my surgeon will review the ultrasound and contact me.
Both the breast and underarm have since refilled.Other than being told to keep my bra on I haven't been given and additional information/instructions it's a let's see if it absorbs naturally approach.
I'm sorry I couldn't give you any helpful information.
Hi, LindaLittleBear. Your post has set me off! Not only do I get the impression my oncologist and/or her nurse do not read my records, tests, scans, etc, they do not even read their own follow up notes after a visit. I was on fulvestrant/faslodex , xgeva, and ibrance and had slowly been developing neuropathy in feet, toes, fingers until it began to rapidly increase which scared me. For months I reported this to onc and nurse. The onc said it couldn't possibly be the cancer drugs. The nurse said to check with my primary for diabetes because she had no idea what could be causing it. I checked with the specialty pharmacist who said it wasn't the ibrance, but the faslodex that was causing the neuropathy. Then I checked the after visit notes by my onc and nurse and all doctor's and nurse's notes since in my file said I had drug-induced poly neuropathy.
I brought this to the same oncologist's attention and she said, of course, it's the ibrance and she'd had many patients who recovered from the neuropathy immediately after stoping ibrance. Talk about being gaslighted for 6 months! My jaw dropped to the floor. Also, she denied telling me that the neuropathy could not be caused by the cancer drugs! And she practices in one of the best cancer centers in California.
She did stop the Ibrance and the neuropathy has at least stopped getting worse. My pallative doc said it may take a year. I have an appointment with a new doc in a different hospital system in May.
Sorry to go on, but I haven't vented about this to anyone before. It just happened in March. We should feel comfortable and open with our docs or we will not get the best care. It's hard to go through all the steps to be seen by a new doc, but I can't trust the doc I have with life and death decisions. Your situation may be different, and probably is, but be quick to express your imoressions with your onc to her face directly. If she's a good doc, she will thank you for giving her the opportunity to correct the impression she is making. Trust your gut.
Hello Rubypapya. Feel free to vent. I'm sorry to hear what you been through. I totally agree we need to be heard and respected. On a different note I had had a follow up appointment with the stroke doctor today at 3:30 after waiting for 45 mins the receptionist approached me (I'd already checked in) and questioned whether I had my appointment letter, all the while the Doctor was standing in reception waiting for her to report back. I told him to have some respect and speak to me directly. It turns out someone had cancelled my appointment?. Any way I left the clinic at 17:40 after a long talk where I queried a diagnosis on my medical record from last summer when I spent several days on the stroke ward, I had been diagnosed with Functional neurological disorder, something which had never been discussed nor explained to me. My point is medics should be brought to task and questioned. We have a right to make informed decision and to be treated with respect and dignity!
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