Hi all,
I have just recently being dx with IDC, grade 3 and nodes positive. I have had WLE surgery and ANC. Basically when I went for my results they told me that the good news is that they’d got ALL the cancer out and all my bloods were normal which is a good sign the cancer may not have spread.There were no abnormalities showing in my liver, bones and kidneys. They have told me they are throwing in the kitchen sink… so to speak, so chemo and rads are to follow fairly shortly. However they said i’ll have to have a CT scan because of grade and node involvement, even if one node is involved they still do routine scans. Since i am feeling healthy and there are no syptoms, ie like aches and pains which is usually signs and symptoms if you do have mets i dont see the need in having one, as its just causing me more anxiety. i asked the BCN if it would be possible to decline CT and she said yes it wouldn’t be an issue. She also said whether or not its spread wouldn’t make a difference to the treatment im having anyway because they can’t cure secondary they can only treat it. If i do start getting pains etc then i can request to have a CT scan.It isnt the scan that is bothering me its the fear of it spreading all over my body. so basically if i have a CT scan now or 6months down the line wont make a blind bif of difference in my opinion.I dont see the purpose of it. Also when i have chemo and rads it will mop anything up that is hovering about.
I have heard people who have got grade 3 and negative node involvement can still get secondaries and ive heard of people who have had positive node involvement and dont get secondaries, so its swings and roundabouts. I hope i am making sense…lol.
Is there anyone else who have had node involvement but havent had to have a CT scan?
KB…x
hi kb,
sorry about the diagnosis, am in a similar boat. I did get an MRI and ct scan and was happy to hear it was clear. I’m just finished 3rd session of chemo and have had minimal side effects, a bit of nausea and aches, pains and tiredness but all manageable. I was able to rest easy that it wasn’t anywhere else when I was imagining pains in all parts and it’s most likely you will. I found the reassurance of it helpful and from what you know it sounds in your favour. It’s difficult to know what to do but best of luck with your treatments, not as bad as you imagine…well so far!
Hi KB, so sorry you are faced with all the challenges that this unpredictable disease brings our way.
It sounds as if you have already given a lot of careful thought to your decision. You are right, the treatment they give in terms of chemo is likely to be the same, or very similar, whether or not they discover secondaries.
Can I just share with you the story of myself and a bc freind of mine? We were both diagnosed at age 47, both had mastectomies and node involvement, both had scans. Mine were clear, hers showed liver secondaries. We both had chemo. Mine was before surgery (neodadjuvant) as my tumour was enormous; the advantage was that they could quickly see if the chemo was working on my tumour with the option of changing if it wasn’t. My friend had a scan part way through her chemo which showed her mets had shrunk significantly - so her regime was working too; had it not been working they could have changed her to something else.
So, all I am saying is, you are right, having a scan won’t alter the facts, but if there is anything to find, it will allow the treatment to be made as effective for you as possible. Most probably all will be well, and the scans a mere inconvenience, but it would allow you to proceed from a place of knowledge. As you have rightly noted, there are no guarantees with this wretched disease, which has a mind all its own.
Whatever you finally decide, I wish you well with your treatment, and a happy, healthy future.
Dear KB, I’m a high node positive lady who has had all the scans. My surgeon said I had to have the scans (body bone scan and liver ultrasound) as my oncologist would need to see the results in my notes before proceeding with my chemotherapy. This requirement may vary from place to place. However, although I was not in a good place at the time, I found it reassuring not to have cancer in other areas despite having it in 15 lymph nodes. In fact, I think I went out and celebrated.Wishing you well.
Dear KB, I’m a high node positive lady who has had all the scans. My surgeon said I had to have the scans (body bone scan and liver ultrasound) as my oncologist would need to see the results in my notes before proceeding with my chemotherapy. This requirement may vary from place to place. However, although I was not in a good place at the time, I found it reassuring not to have cancer in other areas despite having it in 15 lymph nodes. In fact, I think I went out and celebrated.Wishing you well.
I was dx over 4 years ago. Grade 3 with positive nodes. There was no metion of scans until I mentioned that I’d been having trouble with my shoulder. I had the CT scan before I started chemo and it showed a lump on my liver and adrenal gland, I was worried sick.
They suggested scanning again after three months of chemo, and that showed a cyst on my liver and also on my adrenal gland. I was given the ‘all clear’. But it was such a worrying time.
These scans show EVERYTHING. Things that aren’t important.