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SCANXIETY!!

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Re: SCANXIETY!!

FF, I love how you got your nicknames! Thinking about you, Carolyn and Rosie, scanxiety is so hard. Hoping for great news for you and sighs of relief all round. FF, I know how you feel, I think that I've been through most treatments as well. Would you ever consider an immunotherapy trial, there seem to be some in U.S.but not sure where?

I decided to get a wig last week, my hair has practically gone on this trial sadly. Went for long blonde ha ha, not sure I like it as it keeps sliding, oh what we have to put up with!!

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Hugs to you FF. I know I don't "belong" on the Secondary threads, but I feel I "know" you and am thinking of you. xx

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OH ff ..stop feeling down ..you are one tough old bird to have lived with this so long and keep exercising and doing so well ...there is always something oncologist can pull out the bag surely especially in the US ...where there are more drugs available ..if it is a spine met causing problems. ..they would probably offer rads or cyber knife to ease the pain ?

Now think about that baby girl waiting to meet her nanny in January. ..
Sending hugs across the pond xxxxx
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Yes Carolyn we need to hold hands.I wouldn't be so anxious if my back wasn't acting up like this! I've seriously had enough of it!! The other thing is that if this combo has failed its back to infusions. Plus the drugs I have left at this point all cause hair loss, so I probably will never have hair again. Also feel I'm running out of options. I've never been brave enough to ask if I'm still doing good and there is no drugs left f o r metastatic breast cancer what happens? Do we revisit them all? Do we try other chemos that aren't really for breast cancer? Is it curtains even if I'm doing good? I've used abraxane/avastin, vinorelbine (navelbine), xeloda (capecitabine), gemcitabine (grammar), ibrance/ letrozole, and now evermolimus/ exemestane. At least the two hormonal combination gave my body a break from chemo. Time will tell! FF

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Lol Bon! When I decided to join and was trying to pick a name I wanted to pick something my family might not recognize if they decided to be nosey. There used to be a song call Funny Face. My ex husband would sing it to me and call me that, so I knew my family wouldn't know. We remained friends through out our divorce and still are. He is like a brother to me. Has often said I love you just not in love with you. It's the same way I feel now. 

 

My best friend next to my hubby calls me Silly A$$, bc I make him laugh.

 

Hubby calls me Sugar Face and Gracie. My closet friends, call me Gracie. Grac I e came frkm the first time I went canoeing. We took my oldest son and a neighbor's son. Every time we hit a rock or hit bottom he would cry we were going to drown. I didn't know the person in the front had to tell the person in the back that a Rick was ahead so they could steer around it. My hubby is 6'5" and should have been able to see over my bead. He had the boys start to yell "Go ahead Grace! " every time we hit. This stopped Jeffrey from crying. By the end of the day I was Gracie. Hubby didn't know that my grandmother's first name was Grace and my mother's middle. Funny that I ended up with it for a nick name. Sugar face came from a down syndrome 5 year old bus student. He called his brother that, and it cracked me up. When I didn't have the little guy on my bus anymore, hubby knew I missed him and would grab my face like the little boy did his brothers and call me sugar face. Amazing how things get started.

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Hi Rosie

That's appalling! What do they think it's like. I can only think that they are desperately short staffed.

Holding your hand

Bon xx

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Hi Funnyface. Holding your hand and sending you big hugs for your scan and results. It's a tough time. Hope you are not in too much pain. (Why are you called Funnyface? Your face is lovely)

 

Bon xx

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I’ll join that hand holding please, had my appt last week to my results only to be told AGAIN that they are still not back! Received another appt at the weekend for another 2 weeks time to get them!! 😡
Do they have any idea what we go through whilst waiting for these results!!
Good luck to you both!
Hugs Janette xx
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Ff .....join the club of scan anxiety ..at least in US ..u get them quick ..mine was nearly 2 weeks ago ...still living in squeaky bum land !!

Let's all hold hands and wish for stable for everyone that is waiting xxxx
👍👍👍
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Scanxiety has begun!! Scan on Tues. results Thurs. I having back pain again. I was out of pain and back in my bed. I'm back in pain but it's not as bad as before. It mostly hurt at night when I was lying down.Now, Its the opposite. Hurting when sitting, standing and walking. The pain is definitely at T-11 where I have cancer. When the chiropractor tugged on my leg the pain shot directly to that spot. I decided I'm not letting him touch me til we have the CT results. FF

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Thank you ladies. your care and support means a lot and helps a lot xoxo
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Hi Joelle
We are all there with you and your mum when it comes to scans. Sometimes we can get along not too badly when they are not looming in front of us but inevitably they come round again. Hope the results don't take too long. We'll all be thinking about you both and holding your hands and hoping with you. Hugs Bon xx

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Hello Joelle

I'm so sorry that you are all stressed. ..it's the scans that throw everything back into the stress pot again.
We are all holding hands that the results will be good for your mam ...please let us know how things go.
Hugs xx
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Hi there,

when i first joined the forum i saw all these different topics and didnt know soon enough we would be living through each stage, topic, feeling, etc.

So my mom has her first scans tomorrow since her dx in june of bone, lung, and liver mets. I dont even know where to begin, i know shes worried, so i try my best to say the right things but im sure theyre not always. i feel like throwing up im so worried. i have so much faith and really depend on that, but at the same time im just so afraid. Afraid of bad news, i dont know if we can handle anymore bad news right now...
i keep telling myself no and to think positive, but at the same time i have to be prepared because she looks to me for comfort if it is bad news...

we still havent adjusted, things have improved but definetely not a normal routine yet to ongoing treatment and on and off pain and lots of fatigue, that just frustrates her because she was so used to being very energetic.

don't know what to do ladies. sometimes we have good days, but the past few havent been so good. maybe because scans are tomorrow. i dont know...

joelle praying for a cure xoxo
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Hi Oncewild 

We all know how you feel. I found counselling at our cancer centre very helpful. there wasn't anyone else I could talk to like that and I hadn't found this forum. I shouldn't be too reluctant to take anti depressants, they could get you through the next few weeks until you know where you're at. 

Everyone is right about odd pains, they really spook you but mostly they are false alarms. Worrying makes them worse.

Thinking about you while you wait.

Bon xx

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Thanks Carolyn -I am bad at the overdrive and the resultant lack of sleep doesn't help at all. Trying to cope.
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Thank you so much for your reply Funnyface, it is just what I need to read. I am beside myself with anxiety about this and other stressors in my life so your calm words have helped. I hope to get appointments soon so that I feel one step nearer to answers - just bracing myself to what might be found. I am luckily having counselling at the cancer centre and was completely wibble at my appointment yesterday so was seen by the psychiatrist who has suggested antidepressants to help me cope with all the anxiety in my life. Never taken any before but just wondering if the time has come for extra help. It's so hard.

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Molly mop
Cheer up ..it could be a lot worst and the kadcyla can be a good treatment and no hair loss either.
You must be an old hand at treatment changes now and so follow ff and keep kicking the cancer up the rear end !!!
Hugs xxxx
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Just wanted to add you are an inspiration FF and just what I needed today xx
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Good luck Waffles xx

Thank you FF xx scan showed slight increase in size of lung mets (have had lung mets for almost 4 and a half years and everywhere else is still clear so can live with that result!) so my Consultant recommended a change to Kadcyla which will be my fifth line chemo after secondary diagnosis. Feel a bit up and down today but will bounce back I am thinking of you all xxx
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Mollymop, Hope your scan results are good!

 

Waffles, Good luck with the new treatment.

 

FF

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OnceWild, I'm not poking fun at you or making light of your pain. Do know that once you have had cancer it is very hard not to think every pain is cancer!! We all do it! I do agree with you getting it checked out! You need to satisfy yourself that you have been as proactive as possible!! I can tell you I have a very tender area just off to the right of center on my chest. I feel the area feels thicker than the left side. It is right where my one tumor was. The largest and the one I had found. I have CT's regularly of my chest bc I have lung mets. I have had a bone scan too. Nothing shows up! The onc feels it is a combo of nerve damage, scar tissue and maybe my implant hitting it. Yes, scanxiety is a rough time. After 12 years of mets I have had more than my share of scans and scanxiety. First of all I live in the USA and our system works a little different. They give you a prescription to get a scan. You call whatever hospital you want to go to and make your own appointment. You set up your own oncologist appointment too. My oncologist is in the cancer center which is on one end of the hospital where I get my scan. I make my scan appt. for early on a Tues. and my onc appt two days later. When I go to my onc appt if they haven't sent the results my onc marches right through to the hospital and gets them. It took me a couple scans to figure out they could have the answers this quickly and to set it up like this. I keep myself busy. I try to tell myself that I'm doing everything I can do to fight. I also want to say that even if it is mets that many of us have lived a long time. My primary cancer was in 1995. My secondary in 2005! It is in my lungs, lymph nodes in chest one spot in my spine. I still work PT. There is a good chance if it's mets that you will be here a long time! Good luck and big hugs! Please come back and let us know! FF

 

 

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Hello oncewild
That's the trouble with bc ..it keeps you on your toes with every ache and pain but sometimes these are just everyday things that arnt serious but I think we all know our own bodies !
The trouble is that there is so much waiting in between and our minds go into overdrive! !
Back when I had my lumpectomy i got a stabbing pain for about a year and was sure in my.mind they had left a scalpel or something in there !! But nothing like that ..just a bit of tissue pain !!
Try to focus on your everyday life but please let us know how you are doing .
Xxx
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Hello everyone - not sure where to post but feeling scared. Backstory is MX and ANC on 1/6/16 Her2+, then chemo, radio, Herceptin, Letrozole since. Have had tender spot on chest since autumn (prior to rads) and have mentioned it at every appointment. Asked for chest X-ray last oct which was clear. Radiologist said sometimes we just have pain with no known origin and surgeon didn't even look at it in Feb when I went for a lump check in other side. So I've been living with the tenderness which has only bothered me sometimes when lying on my side in bed. An uncomfortable night last week prompted me to take action so rang BCN who got me booked into clinic yesterday. Now waiting for X-ray and bone scan and feeling so stressed. Follow up appointment will be in a month and I don't know how I'm going to cope waiting - such a feeling of impending doom. I have masses of other stuff going on in my life so with this on top I really feel like I will implode. Any advice on coping would be great. Thanks 

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Thank you very much xxx get the results in the morning xx

 

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Thinking about you Mollymop and hoping with you for a good result Bon xx

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I had my three monthly CT yesterday so once again waiting for results.   It is 5 years next week since I was diagnosed with cancer - it never gets any easier.  Sending lots of love and Stable Mabel vibes to anyone else waiting xx

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Thanks Carolyn xxx
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Oh waffles have a lovely day out and enjoy it all. You have earned it after all that chemo !
Hugs xx
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Hi ladies,
Meant to say I was told that the paclitaxel (taxol) is very like docetaxel but doesn" t have as bad side effects so I may be going on a maintenance dose of that. Anyway Carolyn, off to Edinburgh for some serious haggis munching. Might go easy on the whisky though.!!!! love Waffles xxx
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Hiya waffles
What's the difference between the two chemos ..is one stronger than the other? I always thought anything with tax in its name was the same ...
( in 2004 it was still a trial chemo ..I was offered it but stuck to tried and tested fec as I was scared!!)
But so happy for your good news
Xxxx
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Thanks ladies,
I will have problems going back on to docetaxel because it makes my legs swell up really badly.
I've been offered fortnightly paclitaxel and we're also looking into a trial as well but I need to have a certain kind of mutation to qualify for that. I'll find out on Tuesday what is suitable. I'm thinking the paclitaxol will be the one though. xxx
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That is excellent news, Waffles! News like that always cheers everyone up. As someone else asked (Bon?) can you not stay on a kind of maintenance dose of the Tax?

 

Hugs and best wishes. Barton.x

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Whoop whoop ...what brilliant news for you now you can enjoy something nice to celebrate ..whisky and a slice of haggis for breakfast ?? Ha ha
Hugs xxxx
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Brilliant news Waffles, so pleased for you! Best of luck with your future treatments. 

Hugs Janette xxxx 

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Wonderful Waffles!! Any ideas on new treatment? Why can't you stay on docetaxol if it's working so well?

FF

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Hi Waffles, that's great news. Do you know what choices you have for your next treatment?

Hugd Bon xx

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Hi everyone,
This week I got the good news that my 4th,5th and 6th cycles of docetaxel have worked well and my CT scan showed my liver and bone mets were either stable or with some improvement. I was so happy to hear this as I'm a glass half empty person to say the least. The only problem is to try to decide what treatment to go on next. Best wishes Waffles xxx
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Excellent news Mollymop.

Janette - any news on you? Fingers crossed for good results.

Helen x

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Go Molly mop!! I'm loving all this good news! FF

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Thanks Mollymop!
Hugs Janette xxx
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Thinking of you today Janette, fingers and paws crossed xxx

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Hi Mollymop So pleased to hear you good news. Another stable Mabel!
xx

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Thank you Janette fingers and paws tightly crossed for you xxxx
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Fab news Mollymop, yet another Stable Mabel.....hoping I will also still be checking in as "Stable Mabel" on Thursday when I get my results!
Hugs Janette xx
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Thank you Carolyn ❤ I am very lucky I have been largely stable since 2013. It will be 5 years in July since my primary diagnosis. Secondary was February 2013, Would like to think that will give others with lung mets some hope xx
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Hiya
Whoop whoop ....join the stable Mabel club ...now u can relax ..enjoy something nice.
Xxxx
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Had my CT results this morning, was good news - stable with some reduction. Am so relieved I can't put it into words. Thank you for your good wishes ❤ am thinking of everyone going through this xxx
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Great news Helen!!!!
Hugs Janette xxx
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Fab news Helen I am so pleased for you xxx

I did an 8 mile sponsored walk yesterday with some friends and our dogs to raise money for a local hospital. Trying to convince Molly she wants another long walk today but she is having none of it :0)

Sending love to you all xxx