Rash after CT scan?

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I was diagnosed with bc in 2009 and my details are on my profile. I had an excellent prognosis after all the treatment was over. However, when I went for my routine oncology check a few weeks ago, the oncologist found a swollen node in my armpit, on the bc side. She arranged an ultrasound scan and they did a Fine Needle Aspiration, to see what was going on. She also wanted me to have a CT scan, which I had last Saturday.

My Breast Care Nurse rang me with the results of the FNA. She had been told that the cells were abnormal, but not definitely cancer, from which I took encouragement. However, when I went to the results’ clinic, the oncologist told me it was cancer and that the CT scan showed a couple of spots on my bones where it had spread. She asked if I had any pain where she indicated the spots are and I said no. Mind you, now I keep imagining that I have! I am having a bone scan on Monday.

I was totally shocked. Now, I am questioning the results. First, either the cells from the FNA were definitely cancerous or they weren’t. They can’t have changed between the BCN ringing me and my oncology appt. When I asked if the ‘cancer cells’ were still hormone receptive, the oncologist didn’t know and hadn’t asked and said she didn’t have the pathology details. I am not impressed. I have asked for a definite explanation from the pathologist.

Secondly, I don’t believe a CT scan can be that definite that the two spots it showed are cancer, can it?

The CT scan didn’t show up any other problems and my blood tests were fine, btw.

I originally had a WLE/SNB (no nodes involved) and rads and have been on Letrozole for two years. I have had clear mammograms and regular checks and I just can’t believe that suddenly, there are cancer cells in my nodes and bones but no sign of a recurrence in the breast.

I feel really angry that this has been put to me as definite bad news when it seems that there is room for doubt. I may well be in denial but I want more proof.

Added to that, I have now developed a severe red, itchy, painful rash over most of my body. I can only assume it is a reaction to the radiation or the iodine injection. It just seems so strange that it took 6 days to appear. Has anyone else had this?

Ann xx

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Hi Ann,

sorry that you are having so much confusion over the fna that was done. I think it is quite possible that between the bcn speaking to you and your visit to the clinic that they had a second look at the cells maybe involving a second opinion as well. But I think as long as you are not happy with what you are being told - you should keep asking questions.

With the rash you have - it is quite possible down to the contrast solution. I have had reactions on 2 occasions and didn’t realise at the time what it was until I went for further CT and then the penny dropped and I refused to take a chance again. I have in the past had anaphylatic reaction (nothing to do with ct scans etc) and I didnt want to risk that again! It may be worth checking with your gp about the rash if you should take something like piriton which will help with the itching.

Hope you get answers soon that will put your mind at rest.

Dawn
xx

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Dawn

Would it take almost a week for the rash to come out, though? How long did yours take and how long did it last. I shall show them tomorrow when I go for the bone scan. They may decide to postpone it.

I daresay you are right about the FNA result but I just didn’t have confidence in what the oncologist was telling me, especially as she hadn’t found out whether the cells were still hormone receptive. Why did the oncologist not have any details? The first time, they told me the type, grade, stage, etc. It was all so vague this time, which is why I am not convinced. Surely they don’t just make assumptions that it is the same as the first time. I definitely want a second opinion, if they have not already got one.

I know that cancer is unpredictable but I was told I was at low-risk of a recurrence and I just can’t believe these things are showing up without an obvious source, especially as I had no nodes involved at the time. Not only are they saying that there is cancer in my axillary nodes but that it has spread to my bones. I just find it inexplicable. The original bc cells were 7/8+ and so you would imagine that if the AI was going to work, it would work in this case.

Am I just clutching at straws? I have had instances in my life and in my family, where the medical profession have been wrong in the past, so I believe that one should not just accept what they are saying without question.

Ann x

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HI ann04 i did have nodes involved 3out of 9 also cat scan and bone scan .
was told i have secondary lung mets went home fell to pieces ,10days later got phone call from hospital saying oncologist needs to see me a.s.a.p she then went on to say were not sure it is lung mets so took me of tamoxifen ,and am now on 6xfec with a veiw to scaning me after 3 so it cant be a exact science and im haveing to wait till after xmas for my results along with 3 other ladys so please speak to who will listern and get arnsewers if need be as this is your life after all xx josie

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Thanks, Josie. I am so sorry you are going through this hell. Can I ask, if they are not sure, why are you having chemo and why take you off Tamoxifen? It seems a rather extreme way to find confirm it. As you say, it is not an exact science in all cases and I think they take an educated guess in some cases.

It seems to me that if it is that unusual to have a recurrence given my history, then it is equally likely that there is another explanation that they have not considered.

Good luck with your results.

Ann xx

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HI ANN04 well they took me of tamoxifen as the onc said we will give you chemo , if its lung mets the chemo will blast it. They put me on tamoxifen because that would give me a good quality of life and they would save chemo for later when they throught i had lung mets .
BUT as you no im now waiting for someone to tell me my future …
Ann how old are you im 47 have a lovely oh and 2 grown up kids and 2 lovely dogs xx josie

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Josie - I have sent you a PM.

They are still not sure about the cells in the axillary nodes. Apparently, one pathologist thought they were cancer and another said they were a-typical but not definitely cancer so today I had to go for a core biopsy. Monday, I had a bone scan but won’t get the results of either until after Christmas. In a way, I’m glad. I would rather deal with definite bad news then and retain some sort of fairy-tale hope over the holiday period!

Good luck to you and everyone awaiting results.

Ann xx

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Hi , this is my first time on forums but pleased to find am not the only one with the same symptoms etc. i had lumpectomy and radiotherapy and was put on Tamoxifen. this was 18 mths ago. Last routine check they found enlarged lymph node. Came back positive after biopsy. Lymph nodes removed at time of surgery were negative. Apparently in some cases the cancer does not take the expected pathway though the sentinel lymph node and thats why i now have positive lymph node ! was also told it was a grade 3 not a grade 2 as the original but now know grading is very subjective and not as exact as we think. Surgery was scheduled for Dec 23rd. Scans were planned for the week before. 3pm day before my op was told cancer had spread to to both my lungs ! No op straight to chemo on 12th Jan ! Awaiting MRI scans to see if lump has regrown in my breast but all indications are that it hasnt ! Spread to my lung possibly via my bloodstream. Have realised cancer is a lottery, there are no guarantees. Tests are only as sensitive as the equipment ( the CT scanner at our hospital is very good, spots on my lung may not have been picked up on other scanners !) and interpretation of results dependent on the expertise of medical personnel, no one really knows how it spreads ( it can migrate through tissue, go via the blood stream or lymphatic system, response to treatment depends on many factors. Am still in a panic, head all over the place.

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Dear puddin, welcome to the BCC forums where you are right, you will find lots of users with similar symptoms and shared experiences

I am posting a link to the secondary diagnosis web page link where you will find further information and support ideas from BCC which you may find helpful:

breastcancercare.org.uk/secondaries

Our helpliners are back Tues 3rd Jan on 0808 800 6000, usual opening times are Mon-Fri 9-5 and Sat 9-2, please feel free to call for further support, a listening ear and information

Take care
Lucy

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puddin - I am so sorry you are having such an awful time. As you say, it is a lottery.

After the CT scan, bone scan and core biopsy of the nodes, I received my results last week. They said the nodes do contain cancer. I could not understand how this had happened and no-one offered me an explanation. I had a clear SNB and good prognosis after WLE and rads. I took Letrozole and cannot understand why this did not work. I forgot to ask the grade but the cells are still strongly ER+. They are not removing the nodes because some are too deep and they also found a couple of ‘suspicious’ areas in my bones. I am to be given bisphosphonates and am also being put on Tamoxifen.

What did I do wrong? To say we have been unlucky is an understatement!

Good luck to you.

Ann xx