Hi, I’m new here though my breast cancer diagnosis was many years ago in 2004 when I was 43, I had the usual investigations followed by lumpectomy, mastectomy and axillary clearance then chemo and radiotherapy, I am so lucky to have remained cancer free, it was triple negative, grade 3, stage 2 if I remember correctly. The last couple of years and particularly this year the SOB has become an issue, hard to walk and talk and I feel like there is tight bandaging round my chest. Has anyone else experienced anything similar 15 years after treatment, I had my heart checked and they say my lung function ok, my peak flow is 350 but I was alarmed to find out I have pleural scarring, Drs weren’t interested but I definitely am. I also have bloating which I assume is food related as I was told I had IBS about 25 years ago. Anyone else experienced anything like this which you think could be related to our treatment. I’d like an MRI of lungs really as I’m also concerned as to whether this is anything sinister and related to my previous BC diagnosis? I’ve been to my GP so often that I’m known as having health anxiety but is it any wonder after what we’ve been through. For now they’ve upped by Becotide which keeps delaying any further action till I’ve given it a fair trial. Would you keep going back? Would an X-ray show anything metastatic does anyone know? Sorry so many questions, it’s been a fair while since I’ve worried about anything spreading. Sorry my introduction was such a long one.
Kay xx
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Hi if these symptoms are affecting your life, which obviously they are then you are right to keep going back to the doctor, I think I would insist on having X-ray or mri to be honest , when did this all start? has it been coming on for a while slowly do you think?
After everything you went through 15 years ago, I think you have every right to always have a worry at the back of your mind , we all have that and we need re assure with it.
Thank you Deb that was so kind of you to reply, if shortness of breath continues after trialling extra/stronger inhaler I will go back and tell them why I’m worried. I had an X-ray last year but wasn’t sure that would show malignancy, they just said pleural scarring- only they didn’t tell me that but only when I asked for the results and the receptionist said ‘abnormal’, didn’t have the decency to write and ask me to pop in, I guess they aren’t worried but as you say it’s come on gradually over last 2/3 years, slowly getting worse 😕
The only way I know of to check throughout the body for cancer is via a PET scan. mayoclinic.org/tests-proced... I had one done before my surgery for lung cancer 5 years ago. The nodule in the lobe they removed showed up bright white, as well as the very tiny one in the opposite lung that has not grown any since then, according to my annual CT scans. They inject you with a radioactive tracer before the scan.
Thank you vocalEK, I very much doubt they will offer me this but I won't let it go, I will return to GP again if no change in another month. Did you have symptoms with your lung cancer, do you mind me asking if the original site was in the breast?
I was lucky in that I came down with pneumonia. I was surprised at the Dx of pneumonia because I wasn't coughing. I was just very, very, very fatigued. Had to stop and rest every 20 feet or so in the airport and catch my breath. Went to the doctor and got the pneumonia Dx, then antibiotics. A week or so later they did an x-ray to see if the pneumonia had cleared, saw something suspicious on the X-ray, then sent me for a CT scan. That's when they saw the larger nodule in my lower left lobe. They had pretty much decided to do surgery, but sent me for the PET scan to make sure they didn't have to operate on multiple sites. So N.S.C.L.C (non small-cell lung cancer) was my first cancer. Then they operated, taking out the entire lower lobe. The surgeon saw some adhesions between the upper and lower lobes, so he cut those away to make sure that there was room for the upper lobe to expand downward into the space being vacated (allowing for more lung capacity.) All the tissue removed was sent to the lab, and that's when I got the second cancer diagnosis. Still lung cancer, but adenocarcenoma. So I had two types of stage 1 cancer. Since they couldn't be sure that all the adenocarcenoma had been removed, I had to go through (only 4, Thank God) rounds of chemotherapy. I had carboplatin and Taxol.
As for my breast, the reason I ended up in this forum is that they saw micro-calcifications during my mammogram, and I had 4 needle biopsies. The 4th was a stereotactic biopsy, using a larger bore needle. Lab found "atypical ductal hyperplasia" so this was followed up by a surgical biopsy. The surgical biopsy came back totally clean. No carcinoma, and not even anymore atypical cells. Nevertheless, I was told that ADH is a risk factor for developing breast cancer in the future. I was offered tamoxifen. So that's pretty much why I am here. Wanted to find out more about tamoxifen.
BTW, I am in the U.S., belonging to what's known as a Health Maintenance Organization (HMO) which is why they are so thorough about testing and following up. Their theory is that if they catch things early and treat them while they are still small, it saves them big bucks in the long run. I'm shocked by how long some folks in the UK have to wait for tests and treatment. Very sad. Most of the people in the running for the 2020 presidential election want to do away with all private health insurance here and put everyone on a government system. From what I can see, that would be a huge mistake.
You should request PET scan. The onc didnt listened to me for a year and this year finally i went to PS and she said what I was complaining for a year look like cancer and she was right. Bc the onc wait too long the cancer spread to my spine.
Oh goodness that’s so sad, are they keeping it all at bay for you? Were your symptoms shortness of breath? And did you feel anything in your upper back between shoulder blades? Prior to scan did you have any other tests? X-ray?
I was tired all the time, and my shoulder and upper back hurt and lower back hurt. I could not get out of bed without pain. I could not move side to side on bed. I was like that's for months and I thought was related to my implants which it was too. It was a combination of cancer and implants. They want me to take care cancer before implants, so now I am waiting for the 6 months period before this implants can be removed. I am counting the days! . My cancer is on T6 and I also had a fracture that was cause by the cancer in the same place T6.
You do have a lot to contend with, I hope it all goes well for you. I had 6 weeks radiotherapy as part of a trial, I wonder if that caused damage which has slowly taken years to worsen
Also the sensation of tie bandaging around your breast could be implants related. My previous plastic surgeon put implants too big for my frame and that's cause this sensation and my muscles are very stretch. And this is causing pain too. I am removing my implants in October and replace them w small ones .
Not sure if this is of any use but I had a colonoscopy last year and they found polyps which they removed and was benign, I also had a poo test in March which showed protein in the poo (it’s called calprotectin) and could be related to an infection in the bowel. The signs of infection of any kind in the bowel is anaemia, bloating in the stomach and discomfort. The anaemia also makes you feel extremely fatigued and short of breath. I have always had an anaemia problem all my life and was on iron tablets until the gp advises me to stop taking them last year and I believe this is when I started to have the bowel problem. So I have gone back on the iron tablets and also started to take probiotics every morning and am feeling much better now. Still going to have another poo test but I don’t think it’s anything sinister!
Maybe do a blood test for anaemia and poo test as well.
Thank you coco25, the bloating is becoming a big issue because it does seem to affect my lung capacity which already doesn't feel great to me but is ok when I do their tests. Im just hoping that because I had an x-ray last year that it would have shown if anything going on but I'd like to be offered a pet scan and to see a specialist concerning my stomach who might suggest that test you mention. I will try the pro-biotics though in the meantime, it does sound very similar to what you describe. Glad to hear you're better now xx
I had TN grade 3 stage 3+ 16yrs ago. I had lumpectomy, 8x chemos and 6wks radio including the armpit. Skins still tender were they radiated but not complaining. Was diagnosed same time with IBS and lived on Colpermin until a couple of years ago when I was diagnosed with hashimotos hypothyroidism and told a gluten-free diet would help. My IBS went and hasn’t returned so I assume it was gluten intolerance which caused leaky gut and lead to the hashimotos. Wish I’d gone GF years ago!
Thanks for this josiemarie, gosh very similar diagnosis! Gluten free is something I've been considering for myself, the bloating seems to affect my lung capacity I'm sure. Can you still have ordinary semi skimmed cow's milk? I shall.google gluten free. I also suffer badly with anxiety since my diagnosis and I understand bloating, IBS and even shortness of breath are all signs of anxiety. What were your symptoms for hashimotos, my hair has been thinning, I'm tireder than usual and I've a slight swelling in the same area my mum, uncle and nan all had goitres, I was once borderline underactive thyroid so they repeated test and that one ok. Take care and thanks again x
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