I have a question about CT scan results. I was diagnosed with MBC a year ago after being 5 years clear of breast cancer. I'm on Ibrance 125 mg and Faslodex shots. The cancer had spread to both sides of my neck, my sternum, and lung. I had a PET scan in January and the tumors had shrunk in my neck and the onc said the result from the meds were really good.
Around Christmas, my markers started going up and have continued to rise every month. I noticed a new lump in my chest wall on the site of my mastectomy and the onc arranged a bone scan and a CT scan last week. The results came yesterday and the bone scan was clear and she said she couldn't make out if the lump was scar tissue or a tumor, but she doesn't think it's a tumor. On the safe side she's ordered a PET scan.
I can feel the very obvious lump in my breast and I'm worried that my onc is missing something. When I had my first CT scan after the diagnosis a year ago, she said it was clear and hadn't spread, but after the PET scan she said it was in 5 places.
Has anyone else had results from scans that says it's clear when you can actually feel a lump?
Sorry to go on and on. Feeling a bit stressed and fed up with it all.
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Carolhelen
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Oh my, understandable that this is stressing you out! Speaking from experience, if you have Lobular cancer it's quite hard to detect on scans. Mine was super sneaky for years before i was diagnosed. They were all set to put me on Humira for Crohns disease when I insisted on an exploratory laparoscopic procedure to confirm the diagnosis which turned out to be MBC, sadly. Do you know what type of BC you have?
Thanks, Shelly. I have ER + HER2-. Last time I was HER2 + . I just don't feel like the onc is very thorough and from my experience of her when I was first diagnosed with MBC last year, I feel very unsure.
Do you know if it's lobular or ductal? Lobular is very sneaky. It's difficult to detect on scans so I was curious if this may be why they're having a hard time figuring out if it's scar tissue or tumor. I wish you the best of luck. Wish this wasn't so hard for all of us!!
I don't have lobular, so I thought a lump would not be that too difficult to pick up on CT. They did call today to make an appointment to come in for a one to one in 4 weeks. First time I've actually seen a doctor, other than virtually, since the diagnosis.
Shelly has your doctor told you why lobular cancer is hard to detect on scans? I also have lobular cancer. When my tumor marker started to rise my doctor had me do a CT, bone scan and MRI and then a bone biopsy. The CT scan did not show anything, but the other scans did. Just curious if your doctor gave you a reason why it might not show up on a CT scan. Thanks.
I have lobular and ductal cancers. Lobular cells form an almost transparent web rather than a solid tumor. Apparently that web is difficult to see. I truly believe I have lobular spread but never really push it with the oncologist. The tumors they see are enough for me.
Sometimes ignorance is bliss. My onco pretty much told me it’s all in how I’m feeling versus what we’re seeing on scans. I have regular CT scans but it’s more to see the damage the lobular ca has done to my intestines. Mine showed up in my peritoneum and wrapped itself around my small bowel causing constant small bowel obstructions. The meds have stopped the progression and I’m feeling great, thank goodness.
Dear Arisgram---Despite the seriousness of the subject, your note made me chuckle and God knows, we all need a chuckle. I get it and am smiling because I recognize myself in you.
Hi, I was diagnosed de novo MBC after back issues. I had a clear mammogram just a few weeks before my diagnosis and a breast tumour/lump was not found and I don’t have lobular cancer.
You are entitled to a second opinion under the NHS which I think would give you peace of mind. Your oncologist should be supportive if you choose to do this. Mine was. You could also phone one of the many breast cancer charities like Macmillan, Breastcarenow etc. who have specialist nurses that you can talk to.
You really don’t need to apologise here. This is a safe place where others understand what you are going through. Go on as much as you like. We get it! 🤗
Thank you Stardust. I think because everything seems so out of control at the moment, the only "power" I have is knowing everything that is going on, rather than the usual phone call of nothing seems too "critical" right now. I'm sure the whole covid thing doesn't help, but I feel I've kind of been left to worry after each phone catch up. I do have a wonderful breast nurse and she's always on the end of the phone. I guess I'll have to wait to see what the PET shows. Thank you for replying, it means a lot.
I also want to say don't worry about going on and on. That is one of the reasons we are here. Anyhow, you have every right to be stressed. Uncertain scan results and not having a lot of confidence in your oncologist is unnerving for sure. I would think it is likely scar tissue, however, if you are not satisfied with the answers you get you can get a second opinion. Very reassuring. I am fortunate to have a wonderful and smart oncologist I can go to if I am in doubt about anything. She is well known and respected. Do not hesitate and if your oncologist doesn't like it then try to get a new oncologist. Wishing you all the best.
Thank you June. My new granddaughter is also called June! Having confidence in an oncologist makes all the difference. I don't have much in mine at all. On one phone call she told me the cancer on my right thigh has gone. I told her I didn't know I had cancer on my right thigh, and her answer was "neither did I" You can see my doubts!!
This sounds like a very stressful situation for you. I am so sorry that you are going through this. When I was first diagnosed with MBC after my tumor marker was up, my CT scan was also clear but a bone scan and MRI showed a lesion and a bone biopsy confirmed MBC. Not sure why the CT scan did not show anything. I think a PET scan may provide more answers for you. I hope this lump is just scar tissue. Sending prayers.
Thank you love2golfwell. I'm hoping it's scar tissue too. I think I may ask for a second opinion. Worrying and wondering what if is so soul destroying. I try to get on with the day with working, but it's always there in the back of my mind that perhaps the meds have stopped working. Thank you for replying and sending blessings to you.
I’m so sorry you’re dealing with this! I agree that you may want to get a second opinion. My oncologist welcomed it and that reduced my stress. Take care!
Thank you. After reading the replies, I am going to ask for a second opinion. I have always felt a bit awkward to do that in case she thinks I don't trust her, which I don't, but it's my life and as I've read here, the oncologists don't seem to take offense. Thank you for replying. I really do appreciate it.
Hi, I can understand why you're stressed and worried that your one has been missing things although from what you have shared with us I think it is circumstantial. The different types of scans will show up different things so it is often possible for one to show nothing and another to show something amiss. She has done the right thing and ordered a PET scan again so you need to get that done and get the results and then take it from there. In the meantime think about who you 'might' see for a second opinion and if it appears that it IS cancer you could consider getting their opinion on how to tackle it, after discussing it thoroughly with your current doctor. I would imagine she has ordered the PET to get an overall picture of your torso, and to get more detail about that lump you're feeling. Perhaps it can/will be biopsied as well. Sometimes we have to be careful about using our own frustration of getting a new diagnosis and placing the blame on the doctor. It's a lot to deal with emotionally. Most docs are doing the best they can with the somewhat limited tools at their fingertips as no scan gives a perfect picture of what is going on inside us. Having said that, yes we also need to consider if there might be alternative routes to our treatment plans so there is nothing wrong with raising the question.
Are you able to get a more detailed analysis of your cancer's genetic make-up? If you're in the US there is the company FoundationOne which gives an excellent breakdown, including the drugs most likely to work for your specific cancer mutations, which would be a great consideration, seeing as you've had a change in your cancer type. I asked my doctor about it and she ended up arranging it for me. They were able to use my existing biopsy materials (but it depends on what they have they are). Wishing you well on this journey going forward
I agree 13plus. It's easy to take frustrations out on them. I will ask about the genetic makeup of the cancer. I didn't know that existed. My oncologist is very closed book about what is going on. She's more of a "take the pills and we'll see" and is not very forthcoming with results and answers to my questions. I like to know everything about my diagnosis, even though it may make no difference to anyone but me.
Thank you for letting me know about the test. I will definitely ask about that next time. Sending you good vibes and wishes.
I'm glad to be able to give you some new information. After you've had your scan and get results, follow-up with the doc etc see how you feel but you might want to seek another opinion if the doctor is really closed book. You need someone you feel comfortable with and who you feel you can trust, that may be part of the problem here - just their lack of ability to communicate well. It's your body and health so you certainly have the right to know so you can make decisions for yourself!
Thanks so much for that SeattleMom. It's very interesting and informative. I think I'll feel less stressed when I have the PET scan as it was that scan that picked up the spread of cancer last time in 5 areas when the CT showed nothing at all.
Carol, sending you blessings and prayers. As most of the ladies here have said, first don't apologize and yes, you have every right to be stressed. Many here have given great suggestions. I'm all about having a PetScan if that were the case. Linda sent a great link - and if you're in the US as 13Plus said, FoundationOne is amazing !
Thank you Adele_Julia. I'm in the UK at the moment, although lived in the US and go back and forth a lot (before covid) I'm going to look for the test and see if it's available here. Yes, the PET scan will bring peace of mind, if only to know what my body is up to. I think the not knowing is worse than dealing with reality at times.
Thank you for your kind words, it means a lot. Sending you blessings.
I will chime in and repeat what everyone else has said about not apologizing in any way. It is very stressful. I think a PET Scan will provide many more answers. What I am most concerned with is what sounds like dissatisfaction or a nagging feeling of discomfort with your oncologist . When we are at this stage with MBC, I think having trust with your oncologist is paramount. If you do not feel completely comfortable with yours, I would probably seek out a new one that gives you a feeling that you are in really good hands. I also second the Foundation One if you are in the US! Thinking good thoughts for you, Hang in there.
Thank you Andibo. Yes, it's definitely the doubt of my oncologist. She has missed cancers that have clearly shown up before, She's told me the cancer hasn't spread when in fact it had spread to 5 locations, so she is my biggest worry. I'm going to ask for a second opinion or a new oncologist. And, I'm going to look for that test!
Thanks so much for your response. Sending you good vibes and blessings.
Thank you NPmary. I agree, they do watch it if it's not in a vital organ. My concern with my oncologist is that misses so many things on scans and it's not till months later that she will say it's spread somewhere else. So I worry that as my markers are always going up there could be a possibility something is not right. I'll feel better after the PET scan and knowing what my body is up to. Thanks for you reply and I wish you well on your journey.
Do you get to see your scan reports? So that you know the radiologist report. I would not trust a doctor telling me "months later" that it spread somewhere else. I would have to get a new doc if that was my experience. Do whats best for you.
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