New to forum; awaiting information and have upcoming medical appointment. Need advice on questions t
Comments
-
I believe all you need to do...
...in this instance is to let your doctor know what happened. She may be able to move things forward by informing your insurance of her reason for prescribing that CT. But try not to break down over those little annoyances, as there will likely be many more.
Here is another personal anecdote: when I finally had my GP's referral letter for a rhumatologist in mid-September 2015 and called the teaching hospital to make an appointment, I was initially given January 20th... I expressed my surprise at the long wait, and was told, "well, why don't you send us your medical file and we'll see". So, I did, and lo and behold, my appointment immediately got moved up to October 9th. And this was with a radiologist's report that left little doubt as to the nature of her findings after performing two MRIs and 2 whole-body CTs plus a bone scan...
Just trying to convince you that there is no need to rush into anything. Be calm and determined, and you'll get to the bottom of this. In the meantime, breathing exercises several times during the day should help you through this.
PBL
0 -
melt
sorry it took so long to get back to you.I went back to work and I feel I have no time for anything.Idid not have any night sweats or fatigue.No weight loss until the 10 days before I started chemo.So you see how very different everyone is.I had a bump growing right on my forehead.Thought it was a bug bite.It grew for 12 weeks(parted my hair different to cover it up) before I had my physical and my doctor asked how are you doing.Ihad started having abdominal swelling(I thought it was because I was now layed off from work and not getting excersise and getting thick around the waist)Menapause was also somthing i Questioned with the puffy gut,i did not feel right!My doctor ordered utrasounds and then MRI and then CAT scans.Ultrasounds read:ovarian cyst and I thought OK thats it, but each scan I got revealed more and more until they said Lymphoma. I had a biopsy andI didn't find out for two more weeks(sitting in the oncology office) what kind of Lymphoma.Diffused Large B-Cell stage 4 (thebump was caused by Lymphoma jumping the tracks) I found this sight at that point,and still in shock with my own diagnosis, I started reading about everyones journeys.I hope you find the answers about whats going on with you quickly.
0 -
Don’t worry .....Melt said:This is, as ever, helpful
This is, as ever, helpful advice. I do not reckon you are a robot, although of course on the internet anything is possible! (Joking)
you are right about everything. I need to try and relax. I'm just frazzled. My doctor herself messaged me on the chart app a moment ago asking if I'd managed to schedule the CT and now I'm just annoyed at the apparent lack of organization. First I'm told to make it myself and given the number for the scheduling office, then I'm told today not long before I'm due to be at the facility, days after I succeeded in making it, that it needs to be canceled pending insurance and that THEY schedule it, and I ought never have been instructed to do it myself, and now the doctor is pressing me on why I haven't actually made it. Baffling.
about worrying! There is nothing inherently wrong about stress. Without some amount of stress (enthusiasm is a form of stress) most of us would not move out of our tracks. How one deals with stress - or should I say how one responds to stress - is what matters. I know a guy who lays around his Mom's house for free, plays video games all night while smoking weed and drinking, then sleeps till noon. His life is pretty much stress free. Is that a good thing? No! Fear is also a form of stress. Courage is overcoming fear. Those who are "fearless" can never really be courageous.
0 -
Boy, you've been through thePBL said:I believe all you need to do...
...in this instance is to let your doctor know what happened. She may be able to move things forward by informing your insurance of her reason for prescribing that CT. But try not to break down over those little annoyances, as there will likely be many more.
Here is another personal anecdote: when I finally had my GP's referral letter for a rhumatologist in mid-September 2015 and called the teaching hospital to make an appointment, I was initially given January 20th... I expressed my surprise at the long wait, and was told, "well, why don't you send us your medical file and we'll see". So, I did, and lo and behold, my appointment immediately got moved up to October 9th. And this was with a radiologist's report that left little doubt as to the nature of her findings after performing two MRIs and 2 whole-body CTs plus a bone scan...
Just trying to convince you that there is no need to rush into anything. Be calm and determined, and you'll get to the bottom of this. In the meantime, breathing exercises several times during the day should help you through this.
PBL
Boy, you've been through the ringer! I'm sorry to hear about the struggles you've had. Definitely seems as if your good humor is intact, which is lovely.
I suppose going through all this must necessarily either drive a person bonkers or teach an almost zen-like patience.I think i probably ought to feel lucky. I'm having some hiccups with insurance at the moment, but I also haven't had it long, never used it for anything like this volume of tests, and I'm young enough (35) that they just may need some kind of push from my doctors to accept that i need the scans. I don't know, but it seems like she's handling it.
No update on the rescheduled scan yet, but my doctor did message me first thing this morning wanting to schedule another in office evaluation of the new lump. We'll see.
I go back and forth on being able to manage my anxiety about it all, but I'm trying. I really don't have any energy, so I've been setting my daughter up for a lot of crafts and painting and just stay near her and encourage her. I've tried to distract myself with art too, but man being in this headspace is making everything take a weird dark turn!
0 -
In the ringMelt said:Boy, you've been through the
Boy, you've been through the ringer! I'm sorry to hear about the struggles you've had. Definitely seems as if your good humor is intact, which is lovely.
I suppose going through all this must necessarily either drive a person bonkers or teach an almost zen-like patience.I think i probably ought to feel lucky. I'm having some hiccups with insurance at the moment, but I also haven't had it long, never used it for anything like this volume of tests, and I'm young enough (35) that they just may need some kind of push from my doctors to accept that i need the scans. I don't know, but it seems like she's handling it.
No update on the rescheduled scan yet, but my doctor did message me first thing this morning wanting to schedule another in office evaluation of the new lump. We'll see.
I go back and forth on being able to manage my anxiety about it all, but I'm trying. I really don't have any energy, so I've been setting my daughter up for a lot of crafts and painting and just stay near her and encourage her. I've tried to distract myself with art too, but man being in this headspace is making everything take a weird dark turn!
Melt, everyone here has been through the ringer; it is the nature of the lymphoma experience. My Gma out on the wheat farm in Kansas in the 60s still had an outside two tub setup: one side was to hand wash, the other side had a ringer mounted on it, and clothes were sent through, to squeeze all of the water out of them, to then hang on the line.
Cancer treatment is the ringer: is squeezes out all of the bad, to lead to a new freshness in the warm breeze. Think of the coming breeze, not the current ringer.
.
0 -
An aside for Max. . .In the ring
Melt, everyone here has been through the ringer; it is the nature of the lymphoma experience. My Gma out on the wheat farm in Kansas in the 60s still had an outside two tub setup: one side was to hand wash, the other side had a ringer mounted on it, and clothes were sent through, to squeeze all of the water out of them, to then hang on the line.
Cancer treatment is the ringer: is squeezes out all of the bad, to lead to a new freshness in the warm breeze. Think of the coming breeze, not the current ringer.
.
Max, what a beautiful thing to say!
Might it have something to do with the joy of, and protectiveness for, the baby I see in the photo?
Blessings,
Rocquie
0 -
If at first you don't succeed...
... keep trying. You're already getting better at coping with it all - in effect, becoming a patient.
As Max has perfectly summed it up, we've all been through the ringer, and some among us truly are world-class champions!
PBL
0 -
Moving forward now, I guess.PBL said:If at first you don't succeed...
... keep trying. You're already getting better at coping with it all - in effect, becoming a patient.
As Max has perfectly summed it up, we've all been through the ringer, and some among us truly are world-class champions!
PBL
Moving forward now, I guess. Saw her today and she ordered more blood work and scheduled me for a chest X-ray and ultrasound on supraclavicular lymph nodes that popped up over the past weekend. I'd actually been hoping/ almost certain that the new nodes were in my head! I suppose not.
She still wants the CT most of all, but they're experiencing delays with insurance. She says insurance won't balk at the smaller tests. I'll be getting the Xray tomorrow, and waiting on the new US to be scheduled by the office.
I've been meaning to ask, after we get through the many imaging tests, do we at least get superpowers? maybe not Spider-Man level radioactivity, but something would be nice!
0 -
I'm sorry Burni! It seems IBurni said:melt
sorry it took so long to get back to you.I went back to work and I feel I have no time for anything.Idid not have any night sweats or fatigue.No weight loss until the 10 days before I started chemo.So you see how very different everyone is.I had a bump growing right on my forehead.Thought it was a bug bite.It grew for 12 weeks(parted my hair different to cover it up) before I had my physical and my doctor asked how are you doing.Ihad started having abdominal swelling(I thought it was because I was now layed off from work and not getting excersise and getting thick around the waist)Menapause was also somthing i Questioned with the puffy gut,i did not feel right!My doctor ordered utrasounds and then MRI and then CAT scans.Ultrasounds read:ovarian cyst and I thought OK thats it, but each scan I got revealed more and more until they said Lymphoma. I had a biopsy andI didn't find out for two more weeks(sitting in the oncology office) what kind of Lymphoma.Diffused Large B-Cell stage 4 (thebump was caused by Lymphoma jumping the tracks) I found this sight at that point,and still in shock with my own diagnosis, I started reading about everyones journeys.I hope you find the answers about whats going on with you quickly.
I'm sorry Burni! It seems I overlooked your message earlier. It definitely is interesting how differently every individual person seems to react to both illnesses and medication. Goes to show that maybe things can never be predicted 100%, even with rigorous study.
I definitely have a weird seemingly random bloating that's getting worse, while I'm simultaneously still losing weight. Who can say?
0 -
BaBaRocquie said:An aside for Max. . .
Max, what a beautiful thing to say!
Might it have something to do with the joy of, and protectiveness for, the baby I see in the photo?
Blessings,
Rocquie
Ty is now 13 months old, and can run. The world will have its hands full soon !
0 -
Congratulations, BaBa!BaBa
Ty is now 13 months old, and can run. The world will have its hands full soon !
A much-needed cause for jubilation!
0 -
Still no real update, but I
Still no real update, but I figured I'd keep you guys in the loop, since you have all been quite supportive and friendly.
I'm having a lot of tests this upcoming Tuesday; the originally planned left axillary ultrasound and mammogram, and then a head/neck ultrasound due to more left side cervical nodes popping up/getting bigger, and a (very small) newly raised "chain" (doctor's phrase) above my left clavicle.she tested me again for covid just in case (i had tested at the beginning of the week) due to achiness developing in hips and left shoulder, but that was again negative.
There has been some sort of general mild aching in my left shoulder area down to my breast for a little while, but now I'm getting these twinges up through the left side of my neck, almost exactly like a pulling sensation. It's really weird.
I'm hesitant to even tell my doctor about it, though, because I feel like after a certain point I'm just going to seem crazy! Some of this has got to be aging combined with stress and lack of steady health care for almost the entirety of my adult life.
As a side note, did any of you experience any anxiety around going the the diagnosis process? Not fear of something serious, but in my case I am just consumed by the idea I'm stressing out my family, worrying people, and that I'm being stupid or silly for agreeing to all these follow up tests. My partner is USUALLY not a comple ****, but he told me yesterday that all the testing was stupid as bloodwork didn't find anything initally. Apparently he's really frustrated.
So now I feel like i am in a lose lose situation. If something IS going on obviously that's not ideal, and I've every single thing comes back inconclusive, then... he's validated.
Yeah, I don't know. Just feeling like a crazy person these days I guess.
0 -
Uncertainty = stress...
Hi,
I'd say everyone facing uncertainty is under a certain amount of stress. The higher the stakes, the higher the stress level. Everyone reacts or copes differently though. Fear, helplessness, denial, ... you name it, they're all part of the equation. As I see it, the best way to deal with the diagnostic period is to keep quiet about it. Having to deal with your partner's - your parents' - your children's - your colleagues' reactions and coping mechanisms on top of riding your own rollercoaster really makes it harder. As you are beginning to see for yourself, when you inflict stress upon them, they may react with denial and/or resent you for not sparing them that uncertainty.
That is why it is in your best interest on many levels to find ways to manage your own stress and apply them without fail. No point in beating yourself up with guilt either - just look for the means to keep calm and go about your usual life.
I understand that this is easier said than done, but the good news is that there are forums such as you've found here where you can find people who are not as emotionally involved in your life and who have been through what you are experiencing.
This cannot be the answer you are seeking, but there is no such thing as a magic wand...
Hang in there, and don't forget that at this point you do not know what results those investigations will yield - it may well be a completely benign diagnosis.
Regarding sharing information with your doctor though, I would encourage you to be quite open about whatever new symptoms arise - and, of course, your state of anxiety as well. Let her sort out what is of interest in her assessment of your situation, and offer help where she can.
PBL
0 -
all good points. I have been
all good points. I have been pretty mum about all the details going on with tests and all that, but all the same it's been hard to hide that I've felt like crap. That just must be frustrating for others who care about me, I guess. I am keeping busy; trying to catch up on stuff around the house and get some items out for our big trash dump-- I'm going quite slowly mostly because of the aching. Which is definitely more an odd nuisance feeling of discomfort than anything huge or agonizing. Just new.
I gave myself some very annoyong perspective today when I had to take a break in the middle of some mundane chores-- in early October I wasn't feeling tip top but I was so much more myself. I had carried an entire loveseat down two flights of stairs by myself and felt Very pleased With myself to get things done. Now I can't move the damn boxes out with lightweight junk. Ugh.and Your answer is not at all counter to what I was looking for! I was more just interested in hearing about other's experiences with family and waiting for diagnosis. Thank you for giving me additional perspective.
I might message my doctor. I'm still hesitant for her to start thinking I'm just overly anxious about everything. Plus I'm not sure realistically what she could do or say since we're still just waiting for scans.
0 -
Summer breeze....Rocquie said:An aside for Max. . .
Max, what a beautiful thing to say!
Might it have something to do with the joy of, and protectiveness for, the baby I see in the photo?
Blessings,
Rocquie
.
0 -
Still waiting for scans.
Still waiting for scans. Ultrasounds on multiple nodes Tuesday and no word on the CT scan yet. It would make sense to me that at this point insurance may be waiting for the results of the ultrasounds to OK the CT? Maybe? Not sure. At this point I'm over the anxiety. I feel guilty worrying when I should be focused on other things. Probably I'm fine and my body is just going haywire with age.
Everything is just too weird. Most of my most pronounced lymph nodes are in various places on the left side of my body, but yesterday a new fairly large hard lump popped up in my RIGHT breast. It wasn't there before, but no nodes that I can feel beneath my right armpit. There's been mild involvement with right cervical lymph nodes this whole time, but not as many or as large as on the left.I don't know anymore. I can't sustain the level of anxiety I had been feeling, and I just don't even want to worry about it anymore. I have not started my menstrual cycle yet, it's probably a week and a half late, no chance of being pregnant. It's possible that is because I'm down to 99lbs but I don't know. I feel extremely off and I'm just over it.
I had actually messaged my doctor about the twinging pain on the left side where the nodes are most tightly clustered, and she seemed abrupt and just told me the US was the next step and not to go to the ER if there were any big changes. Obviously I do not want to bother her with this new lump.
Im tired of feeling crazy.
0 -
Hold yourself together
Your doctor, I believe, is trying to convey that the answers you seek will be coming soon. And in the meantime, you need to stay put. If these investigations yield a cancer diagnosis, the last thing you need is to go to the ER and get CoViD-19, which would only delay treatment.
Just try and remain rational for a little more, ok?
0 -
Agree with PBLPBL said:Hold yourself together
Your doctor, I believe, is trying to convey that the answers you seek will be coming soon. And in the meantime, you need to stay put. If these investigations yield a cancer diagnosis, the last thing you need is to go to the ER and get CoViD-19, which would only delay treatment.
Just try and remain rational for a little more, ok?
I totally agree with PBL. I know it can be stressfull, but wait for the process to complete and you get the full results. At that time, knowing all the relevant information, you can determine the next steps.
I am going through a similar process, and PBL's advice was very helpful is talking me through it.
0 -
Thanks guys,
Thanks guys,
Definitely trying to sit tight over here and not be ridiculous. I'm a little bit anxious because I haven't gotten results from tests yet, and they were mostly pretty early in the day yesterday. But then again, it WAS just yesterday and we are having something of a weather event right now, so I'm thinking things may have just shut down early today.
I am actually feeling somewhat positive so far today; yesterday was awful from start to finish due to various reasons, including and culminating with the fact that we got into a car wreck right as we were leaving my last test of the day. We are all fine, but our car is totaled! What fun! Perversely, I feel like that has maybe gotten some of the bad "juju" out of the way and things might go well with all the scans.
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 733 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards