Almost 10 years on and in panic mode again!

lornauk

Hi Ladies.

I first came to this site almost 10 years ago and I swear everyone here saved my sanity from the fears of this dreadful disease.

I was dx with IDC, Mastectomy,  did CMF chemo, no rads due to bad asthma at the time. Node clearance 3/16 positive.

Since then have done 5 years Tamoxifen and I am into 4th year of Letrozole.

Long story cut short...  I had a really bad chest infection over christmas which required 4 lots of different antibiotics. My GP sent me for a chest x-ray which in turn suggested a CT scan.  That threw up an 'opaque lump' in my upper left lung and multiple nodules in my lungs and liver, nothing positive about anything being malignant.

A specialist radiographer checked my scan and deemed the lump nothing to worry about, but because of my past history of bc referred me back to my BC Oncologist who I seen last week.  She told me the nodules don't look suspicious as mets, but I have one tiny area that looks suspicious and I would have another CT scan in 3 months so they can compare them. The area they are concerned about is so small that they couldnt get a biopsy from it. The liver nodules they arent concerned about.

I came home today to an appointment for a F18 PET CT Bone scan next week.  I am trying to keep positive about this and keep telling myself the Drs are being cautious organising this. A little part of me is also thinking something else...you know the feeling...is it back ...is it mets?

Ive had no bone pains..apart from the normal getting older ones lol (I'm 56). The only thing I get and its very very rare is a cramp type feeling in my ribs on my mastectomy side..and that is only when I am leaning over putting my grandson in his car seat. I havent had that pain for a while though. Apart from all of this I am feeling quite well despite other health concerns.

Think I need my hand holding again and some reassurance. I thank anyone who replies to me.

Edited to add that my Oncologist said she thinks the lung nodules are scar tissue from recurring chest infections. I also have Bronchiectasis.

Moderators

LornaUK, there's a whole community of hands here to hold yours, although we're sorry you're back after so long because of this worry!

Please keep us posted on how your test goes next week.

• The Mods

bevin

Dear LornaUk, I'm sorry you are going through this. It does sound like your doctors are taking all the right steps.  Thats good.  They are being diligent. Wishing strenght for you as you go through this.

flannelette

I know how it is - there's a part of you that says oh just leave me alone! and there's a part way back that is a bit grateful that the drs are doing their utmost to look after you.

I had a lymph node appear under the armpit on my mammogram last spring. It was 1.2 cm rather than the 1 cm upper limit. so that led to an US. which led to my summer of the never-ending scans including the bone scan including both side of my cranium and arms right out to fingertips. nothing. CT scan, fine needle biopsy, and the grand finale - surgery to take out 6 lymph nodes & dissect them. nothing. but even that wasn't enough - had to go, like you, back for yet another ct scan? mri? I can't even remember - on the "granules" in my lungs another 3 months later, to see if they had grown, even though my surgeon said they were most likley scars from past infections. which indeed they were.

Once you've had bc, the drs are ultra scupulous. are you by chance in Canada? it's awful, and scary, but once in the net they've got you, and I finally was at least able to say I was grateful they were doing their best even though I was so sick & tired of every square inch of me being intruded upon and examined. as for that odd pain on the MX side when you bend, I get that too, right in the ribs, if i bend a certain way. In your case your lung infections brought it on - in my case it was really severe dermatitis which got my lymph nodes up in arms & screaming. I 'm sorry to say but I'm realizing that, once having had bc we just have to accept the inevitability of any little blip that they can see and the search for the needle in the haystack is on. I'm almost 5 years out...and wondering what on earth my lymph nodes will be up to for my upcoming mammogram and also see I've ALREADY got an appt with my surgeon in may and medical oncologist in June. I would hope just to tell m that I've done my 5 yrs arimidex and....but I wonder if they're lining me up since they're really NOT completely convinced that all the uproar last summer was from my rash. I have to give them A + for diligence! they have to keep following every trail....much to our annoyace and fear. all the best! i think you'll be just fine, and, like me, eventually be grateful that they examined every sqaure inch and no little hooligans lurking. holding your hand..

lornauk

Thank you so much for your replies!

Flanelette, I am in Liverpool in the UK.  I have my treatment in The Linda McCartney Centre here. I guess when anything like this pops up, Drs are always in cautious mode 'because of your past bc'  it seems to flag up more tests than normal. Which, I guess is great for us, but also frightening as well. Wondering 'Is there something they suspect and aren't telling me' ? 

Im going to keep telling myself this scan is just a 'being cautious'  one and I will once again get some peace of mind.

flannelette

I'm wondering if we should be thankful that we have universal health care? in the US patients would have to educate themselves, it seems to me, to make these decisions and then fight with their insurance companies whereas we just get stuck onto the assembly line.

You can always refuse.

I mean, I had the bone scan too, over what? a lymph node that was 1.2 cm instead of 1 cm! They personally and professionally cannot rest until they are satisfied they are doing their job well - and you want to say back off! If you have one tiny suspicious area but the liver etc & other things are of no concern I would tend to believe them.

In this case, as in mine, the bone scan - ugh - is the very unwelcome icing on the cake but they would not consider that they are doing their job correctly unless they do it all, and that means looking through the entire haystack. They had me actually booked to see the MO long before my results were even back!

Canada tends to follow British protocol - I just knew you were someplace with unversal health care when you wrote about walking in the door and your bone scan appt is ready. You do not mention coughing or shortness of breath and other people here have told me about numerous follow-up scans till they finally give up - I take anti-anxiety meds in such situations and keep reminding myself the they must have invented the word cautious. all the best. holding your hand.

LRM216

Just want to offer my best wishes for nothing cancer related at all.  Re the rib pain.  I too have it when moving in a particular way and my BS checked me all out and informed me I have Chondritis - which I will probably always have (as I'm 4 yrs. out from lumpectomy and re-excision) but at least it not cancerous, although it sure does hurt when it "cramps" up.

lornauk

Thank you so much for my replies. You don't realise how much better I'm feeling today.

Here in the UK we have some areas where treatment isn't as good as another area. Luckily for me The Linda McCartney Centre is what we call Gold Standard, which is the best you can get.

LRM216, hope this doesnt sound awful, but its helped me to know that other people have had the same rib pain as me... and its probably nothing to worry about. Touch wood, I havent had the pain for quite a few weeks and its helped putting my grandson in the other side of the car so I'm not stretching the wrong way.

Flanelette, thank you so much! I'm having the scan where you have a radioactive imjection. I remember having one just after diagnosis and it threw up a lot of hotspots which were false positives. Apart from a little breathlessness due to asthma, I am feeling fitter and better than I have in a long long time.

I've always maintained that going through bc is more painful mentally than physically. I'm going to have a wee dram of whisky tonight and raise my glass to the lovely ladies on here who continue to support everyone.

sam52

Lorna,my old pal.....

So sorry you are having this worry.

I would think it is highly possible, given your bronchiectasis,asthma and various chest infections, that you have some benign scarring in your lungs.

The worry and the waiting are really the pits.

I hope it will turn out to be 'nothing'

Sending you hugs

Sam x

flannelette

yes I had the same scan this summer with the radioactive injection then come back 2 hrs later....and every single test - MRI, CT scan can't even remember them all, had a friggin IV where they would inject a special chemical to really show up any spots - the MRI, I think it was, said I'd have odd sensation like i peed my pants - and yes it did feel that way, all lovely & snug as a bug in its carapace in the MRI - they didn't do all that IV stuff first time around...and didn't do my cranium and fingertips either - boy you have to credit them with being thorough...glad to hear you're at one of the best..tht's why they're doing such a splendid job..I'll bet anything it's the scars from old infections, I think they are very common and likely nearly everyone has them, even me, who has had pneumonia only once.

lornauk

Thanks again flannelette.  I was told that the nodules on my lungs don't look like mets, I trust them as they are the experts and are always looking at these scans. I reckon I'm having this bone scan just to make doubly sure. If it turns out theres nothing suspicious, then I guess I have that peace of mind that all is well.

Its a scarey old disease is this!

lornauk

Good Morning.

Had a call out of the blue yesterday from my Oncologist...she never calls me. She was sitting reviewing my notes and was calling to say she had arranged a PET/CT scan and didnt realise it was so soon (today).   At first I was really worried that she had called... you know how you have a mini panic attack.

I told her that I was telling myself that she had arranged the scan to be on the safe side and she told me that is exactly why she did it and not to worry. I told her I was feeling very well and she told me if anything was untoward then this wouldn't be the case.

I'm away to my scan now. But just wanted to thank you ladies for your support.

sam52

Hope everything went well with the scan, Lorna....and that you don't have to wait long for results and they show all is fine!

Sam xx

lornauk

Thanks Sam!   Hope your keeping well. Had scan yesterday and scheduled to see Oncologist in 3 months. Don't want any more phone calls from her!

sam52

I bet! Phone calls scare the hell out of us....

Will you have to wait 3 months for your results?? I know the NHS waiting times are bad - but that is ridiculous!

Sam xx

lornauk

I'm having another ct scan on my lungs in 2 months, to see how the 'tiny spot' they are watching is doing.  Oncologist said she will see me 2 weeks after that. If anything is wrong meanwhile (with this PET bone scan) then I guess I will hear from her. 

sam52

Keeping everything crossed that all is NED......

Anonymous

I will also keep everything crossed for you.