Symptoms prior to diagnosis

[Rosiero]

Bit of an odd question really. I have MBC diagnosed in May 21 but it is now obvious that I have had it significantly longer as I have it in most of my bones which are showing signs of repair now that I am on medication . I had symptoms however for a couple of years before diagnosis. ie. hair falling out badly, painful flare up of bones and a sudden intolerance to sunshine. At the time I thought I had a thyroid problem but this came back clear. Has anyone else had these symptoms prior to medication? Nobody so far has been able to answer this query.

[Discocat]

Hi, Yes I have had similar symptoms prior to diagnosis.

I was confirmed MBC (de novo) around same time as you and probably have had cancer for around 5 years or so…. Estimating from the extent of its spreading and my last mammogram being about then.

I also have metastasis to numerous bones now.

I was actually treated for having thyroid problems a few years before finding out about MBC. The symptoms for this were tiredness, weight gain, brain fog, loss of libido, hair loss and hormone irregularities leading to irregular periods. All the thyroid tests were just borderline, but it was determined that it was functioning in an underactive way (hypothyroidism) and that I had Hashimoto’s disease.

Confusingly all these symptoms are the same for peri-menopause that I was going through at the time.

I also had achy rib pain to the point of not being able to sleep without tons of extra pillows. X-rays at the G.P came back clear, but at the time we were looking for a fracture.

I discovered the cancer after a mammogram in May 2021. By my first oncology appointment in June it was confirmed MBC.

I no longer have thyroid issues it seems. May be I never did, perhaps the symptoms were actually from having breast cancer?

[Rosiero in reply to Discocat]

Many thanks for these replies. So helpful to make sense of how it started and perhaps help people in the future to get an earlier diagnosis. X

[Tam-56]

Began with brain fog, peri menopause symptoms… I felt like it was hormonal imbalance. DX hasimoto thyroiditis synthroid eventually reduced symptoms. Was having regular yearly mammograms with a lot of pain in my left breast during mammogram. No one informed me I had dense breasts. 2018 DX De Novo with tumor in left breast with spread to left armpit lymph node and hilar lymph node. All resolved with Ibrance and Letrozole last scan December clear.

[RLN-overcomer in reply to Tam-56]

No one told me I had dense breast for years, and I was getting mammograms 3 years after aggressive chemo, and radiation treatment . I was told by my new, and very knowledgeable Oncologist that I had dense breasts. He put in my chart no mammograms. Sonograms ONLY. I was misdiagnosed, and have dense breast, but how could you misdiagnose physically seeing the protruding lump on my breast, which was the reason I went to the Dr. for the mammogram years ago. Knowledge, and self advocacy by GOD, and I are my blessings.😇

[Ursula_I]

No, I didn't have those particular symptoms, but I did have others which were dismissed as too vague, which I am convinced were from the cancer as it is so extensive now it's finally been diagnosed

I had a very cold head (had to wear a hat inside!), sore ribs/trunk area (dismissed as being due to the radiotherapy even tho it had been years!), itchy patches where there are now recognised to be tumours, very itchy leg. I think the last was due to the lymphatic system.

No-one seems interested in exploring those symptoms I kept reporting, and why they dismissed them (except to say they were all too vague).

It's frustrating, you start thinking, what if it had been caught sooner... I'm trying to avoid those thoughts, as it doesn't help the situation now! Keep being positive and looking forwards.

Hopefully the aversion to sunlight has gone now! ☀️ I wish you all the best,

Lucy

[Rosiero in reply to Ursula_I]

Thank you - it’s all very interesting about pre diagnosis. and good for other people to have this information.

[Gwynhubhome]

Hi Rosiero, I was diagnosed with MBC exactly 30 year's after my mastectomy, amazingly. About five years earlier I had noticed my right clavicle was oddly enlarged - on the side where I'd had the original cancer. I had various x-rays and ultrasounds but nobody could explain it. I did wonder to myself if it was connected with the cancer all those years ago but I was happy to believe what was told me and I tried to forget it. It was completely painless. I had no other symptom until excruciating back pains some five years later. I was eventually,, after several visits to GP's and A&E, diagnosed with extensive bone Mets throughout my whole body, includinllg skull,- a good five years after I'd noticed the odd, protruding clavicle (in 2019). My oncologist wasn't very interested either when I mentioned it to him but I'm convinced I must have had MBC for some years. I wonder if anyone else has had experience of enlarged bones. I am on my second line of treatment now after over 2 years on Palbo etc which stabilised the bone Mets but didn't reduce them. I now have a spread to my liver and am on Capecitabine, which seems to be working for now. With lovely side effects! Good luck and good wishes.xx

[love2golfwell]

I had no symptoms prior to my MBC diagnosis. In fact I felt the best I had ever felt. Mine was found because my bloodwork showed an elevated tumor marker which had never happened before. My doctor asked me if I was having any symptoms and I said no. She was concerned and scheduled me for a variety of scans that showed a lesion in the ischium. I was going to be moving to Florida the following month so we found a doctor here and started on Ibrance and Letrozole right after. I'm so glad the tumor marker indicated something was off and my doctor did further testing, otherwise I don't know when MBC would have been found.

[Iwasborntodothis]

I just thought I had arthritis and that was why my hip was so painful, then I was told I had viral bronchitis when I had breathing problems. It was finally a lump that started protruding from the area between my breast and armpit (that looked like a bruise) that sent me to the doc. I was stubborn and hadn't gotten a mammogram for a few years because I lost my sister to breast cancer in 2017 and I thought, because of her genetic testing, that I had to be in the clear. Boy was I wrong.

[Kellyonekanobe]

I also had very painful bones for several months before I was diagnosed. As a matter of fact, my limp become so bad I had to buy a walker. The reason I could not see a Dr except for telehealth was bc of Covid. When I finally did get an appointment, my bones were so brittle my femur fractured stepping off my bike. On August 6, 2015 was diagnosed with invasive lobular stage 3 breast cancer. Had bilateral mastectomy, 10 lymph nodes removed, chemo and was fine until June 4, 2020 when I was diagnosed with stage 4 MBC with Mets to my bones and liver and more recently, my stomach which is causing pretty severe digestive issues. Can’t really go there but will always wonder if diagnosed earlier would it have been less severe. Will never know. We have to do the best we can with what we have. Blessings to you💕

[Dragonfly2]

Thank you for this provocative question…the many answers clearly indicated that MBC hides behind many masks…and everyone is eager to believe that their vague symptoms are anything but this kind of cancer. About 15 years after my initial diagnosis and “successful” treatment for dc in situ, I noticed a pain and weakness in my right leg…stemming from the hip and really impacting m6 right knee. I even had this mysterious zinging sensation on the top of the right ilium gone…haha..no worries, keep exercising…So began months of various therapies trying to fix a progressive limp…Finally after the chiropractor looked at me and said with some concern that I should be fixed by now if the problem is fixable through chiropractic therapy…I called my doctor and said I needed something done stat. After several bone tests, scans, etc, I was diagnosed on the day that I retired that I had mbc . Lesson: don’t dismiss warning signs. Investigate all mysterious symptoms that seem to defy normal explanations. When in doubt, advocate…especially if you’ve had a run in with the big C in the past…or not 🧐

Again, thank you for posting…

[Hidden]

Hi Rosiero, I had symptoms for 14 months before my former doctor diagnosed me with Metastatic BC. I saw 4 different doctors and everyone said I was fine. Very frustrating.