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Next Appointment

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

When is your gyno/oncologist going to begin seeing you in the office again.  I was supposed to have a 3 month checkup March 24, it was canceled and no other apoint meant made.  Bloodwork was done, appeared to be ok.  My next follow up should be in June.  I am a stage 1a upsc survivor, hysterectomy was performed October 2018.  I would be extremely nervous to miss another appointment.  Can they keep us on the back burner indefinitely.  

zsazsa1
Posts: 539
Joined: Oct 2018

I insisted that they see me because I was losing weight, but they only got me in when the medical oncology side called for me.  Did you have chemo with a medical oncologist?  Can you ask your med onc to call and request that the gyn onc see you for your exam?

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

My oncologist and gynecologist are one and the same.  I appear to be doing fine and I feel well, but, I was just out of treatment a year on March 5.  I just want to stay on top of things.  This cancer is such a sneaky one, a lot of women recur  between 1-2 years out of treatment.  I want reassurance that I'm doing as well as I feel.

oldbeauty
Posts: 286
Joined: May 2012

I am in a bit of a different boat; we are following the development of a suspicious single pulmonary nodule.  I am scheduled for a CT in early May, and the cancer center main hospital is open for business so I know the CT will be done.  The follow up office appointment with my oncologist a week later...I don't know.  But it seems to me if you are at a delicate interval post-treatment, and you have the aggressive form of the disease, a diagnostic imaging test may be warranted.  I have one physician for whom a patient's peace of mind is "medically necessary," and coding for the CT for insurance purposes is a game physicians know how to play.  In my case, the SPN was found as a result of "medically necessary" patient peace of mind.  This might be something for you to consider. Health uncertainty in these stressfully uncertain times is not healthful.   Best wishes, Oldbeauty

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

Thank you, Oldbeauty, I am due for my semi annual ct scan in June. Hopefully, by then the hospitals will be more open to patients.  If my doctor wants to skip and just do bloodwork review, I will push for my ct.  Peace of mind in itself is healing.  I just am looking for reassurance.

teranarmstrong's picture
teranarmstrong
Posts: 11
Joined: Apr 2020

Cancer has a way of rearing its ugly head again somewhere down the line, whether 10 weeks or 20 years. If you skip anything you'll always wonder "what if....?" And you may be right. What if? i'm not gloom and doom oriented, I've just learned that doctors often see things from a different perspective than we do. Not right or wrong, just different. This is YOUR body. Do it.

 

Teran

LisaPizza's picture
LisaPizza
Posts: 331
Joined: Feb 2018

I just had my regular follow up 2 days ago. While I wasn't entirely sure it was right to do it now, I was also quite glad to get it done. Even when things are OK, it just weighs on you to have your cancer care pending, as I know you all understand. As it turned out, I got a twofer out of it because I had a UTI and she took care of that for me.  

BluebirdOne
Posts: 366
Joined: Jul 2018

I called Mayo (I hesitate to name the facility but they have done all of my care and they take care of the sickest) to confirm that my May 4th blood work and exam were still scheduled. I have gotten a few emails from them detailing their response to Covid-19, so I know the risk is small but still a risk. They said that they were just reopening back up to outpatient visits and that I am still scheduled. I am hesitating whether to reschedule a month later (4 months rather than 3 months since my last visit and I had a CT scan the last visit due to pelvic pain). I feel fine, we have been quarantined since we returned March 23, have no issues or concerns relating to my cancer. Of course we will take all precautions but we have to stay in a hotel for at least one night because it is 6 hours from home. Driving, instead of flying. The hotel gives me the most concern. We will bring all our own food. My main fear is that June might not be better than May especially if states open up, people relax and the spreading continues. They are discovering so many asympotmatic carriers, and people who have had it are still testing positive a month later. Unless things get much worse I am leaning toward just getting this done in May. 

xxoo

Denise 

Maxster
Posts: 56
Joined: Apr 2020

In an effort to be reassuring, I will share my story.  I just completed 25 rounds of radiation done 2 hours from home.  I stayed in a hotel for five weeks (5 days per week).  I did wipe down everything before I settled in and regularly wiped door handles to and from the building and surfaces in the room.  I am one week out and am fine.  The hotels have really ramped up their cleaning as well.  The staff wants to stay well too!  I think things will be fine but you do have to take extra precautions.  Wear a mask going into the hospital and stay as clear as possible from others.  The hospital might still have precautions.  At UW-Madison, WI where I went, they checked your temperature each time I entered the building and asked the usual questions about symptoms and exposure to positive Covid tested persons.  Good luck to you.  

BluebirdOne
Posts: 366
Joined: Jul 2018

We recently moved cross country so had to stay in two hotels. It freaked us out even though I know the hotels did extra cleaning (I can only take them at their word) and we touched nothing inside and out without wiping first, and did a insane amount of cleaning inside the room with wipes. That was about a month ago when information about transmittal was not as well known or correct. We will do the same on this trip. We were more worried about the contact with staff so we would not go down a hallway if someone was in it. We stay at Residence Inns for the most part because they have a full kitchen so bringing our own food from home works well. I am also worried about going in the elevator to my doctor's office as it is on the 10th floor within a huge elevator bank. Can I hold my breath for 10 stories? (I have a mask and gloves). I hope that the whole facility is not going to be very busy just reopening again.  It will be interesting to say the least. My husband will stay in the car! 

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

I just received the automatic reminder of my next exam with the gynecological oncologist on May 4th. I'm on a 4-month schedule now. I'm also due to see my PCP the following week, with bloodwork done before that. It will be interesting to see if both appointments still happen as scheduled. I don't have any symptoms of anything amiss right now, but I hate to get off schedule.

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

I know what what you mean.  I guess it's out of our hands; howeher, it makes me very nervous.

janaes
Posts: 800
Joined: May 2016

This situation has been hard for me. Ya sit been .ore than three years from treatment. It been almost 3 and a half. I got a text a few days ago about my cancer follow up for this week. I called about it and know have a vertual appointment. I guess i will do it that way but would rather go in. I was going to request a ct scan possibly since its been over a year and a half since my last one. ( i think)  im not sure if im going to beable to do it. I too dont want to put these thing off. I am up for my yearly visit with my PC doctor too and my mamagram. I was hoping to go i to see my PC in person. I was already bummed that im only doing cancer ceck up every six months and axious a bit to go but it just not goint to be the sa.e. ii ussually do blood work and she checks me physically. That stuff wont happen. Im sounding pretty negative but i hope it all works out. After cancer appointment I will worry about PC visit i guess. 

Donswife48
Posts: 327
Joined: Nov 2015

Every 6 months I get a routine check up, blood pressure, temp, weight, then a physical inspection to make sure there are no lesions and everything looks good.  I am not a believer in talking to a face on a screen, and my opinion might be that they could send out or by patient portal ask questions.   Because that's basically all they can do with a televisit, ask questions and the patient answers.  I don't have another appt until August, but I will need to see my GP in July.  

IMO, you are not sounding negative, but you have the right to be concerned especially with your history of cancers.  Hugs

 

 

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

I did call yesterday to see if I could schedule my annual mammogram. Usually I go in March, but the breast center wasn't doing any routine tests at that time. The scheduler I spoke to yesterday told me they had just opened up the calendar the previous day for routine mammograms, although the first appointments weren't until June.

While I could probably do my upcoming appointment with the PCP virtually, as long as I'm able to get my labs done in advance, I'm not sure how beneficial a virtual appointment would be with the gynecological oncologist. Let us know, janaes, how it goes for you this week.

Molly110
Posts: 182
Joined: Oct 2019

I've been interested to read over the past several months how many women want to have their check ups as close together as possible. My first 3-month post chemo appointment is next month, and I don't mind going because my gyn/onc told me that it would be really unusual for it to come back in the first year post diagnosis at my stage. But once I pass the first year, I'm going to dread those check ups and wish they were going to be further apart. Perhaps the difference is that the only thing in store for me with a recurrence would be more of the same, and I don't think I could manage that. I had neuropathy in my hands after the first chemo, and it was pretty serious after the second. My hands are okay now, but my feet are not, and the carboplatin was hard on me for both the neurpathy and also ringing in my ears, which made me feel very lucky to have escaped treatment with no hearing loss. Taxol is so tough that I think the side effects of carboplatin tend to not get as much warning or attention.

On the bright side, I've switched to virtual PT and OT, and both have been very helpful. 

teranarmstrong's picture
teranarmstrong
Posts: 11
Joined: Apr 2020

My initial chemo finishes in June and I have a check up in 3 months after that because it is serous cancer which is very aggressive. I would go every week if they wanted to exam me and DO something to take cancer out of me in any way shape or form. In fact, I'm scared to death of ending chemo because at least I'm doing something to fight back.

Take advantage of every opportunity you can get to keep this beast at bay!

 

Teran

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

I am not a fan of the virtual visits.  They can only look at you and ask a few questions, no listening to our lungs, heart or bp checks, no pelvic exam, kind of useless if you ask me. But hey, they can bill Medicare and insurance, I'm kind of a skeptic.  I'd rather take my chances with going to my gyn onc office.  They may begin elective visits and procedures at my medical facility May 1.

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

I sent my doc's nurse an email today asking when they are going to start scheduling follow up visits again.  I mentioned that my March appointment was canceled, and that I was due for a ct and visit with in June and I wasn't wild about missing anymore appointments.  Lo and behold, I have an appointment for a ct June 30 early afternoon and a appointment with my doc later in the afternoloon.  I'm feeling fine and have no symptoms, but, my peace of mind has been somewhat restored.

BluebirdOne
Posts: 366
Joined: Jul 2018

We just returned from my first office visit since the lockdown. (Mayo in Rochester) My visit went well, still NED. I had blood work (CA-125 is 6) and an internal exam. Everyone entering the buidling was prescreened, and had to wear a mask. I had to go in the elevator up 10 floors which scared me because it was an enclosed space. (I walked down the 10 floors to avoid people)  I was alone, but still these elevators carry hundreds of people daily, even in the very slimmed down amount of people in the building. Except when I got to the oncology waiting room which was packed. Everyone was social distancing because they placed signs to not sit in every other chair, but 6 feet is not really enough. I went to sit in another waiting area down the hall where there were very few people and the desk clerk cleaned the chair that a patient had been in with spray, immediately. No so in the oncology area. Where I had my blood drawn a man did nothing but clean the chairs, (it is a very large room filled with hundreds of chairs but had less than 10 people waiting. ) when he finished, he started all over again. The office visit was typical but hard to talk behind masks. We social distanced except for when she actually had to touch me. Very weird. For the most part Mayo is doing a great job. In the outside world that was not the case. My hotel, which mainly Mayo patients use, had no employees using PPE. No masks, no gloves. We did our best to stay safe in the hotel with maniacal cleaning, etc. The rest stops or truck stops we had to use had few or no one using a mask, everyone touching the doors with bare hands, the clerks not wearing masks. We did our best and even went too long a time to pee because of the risk. It was rare to see people social distancing or wearing a mask outside, except in Rochester by the medical buildings. We brought all of our own food which eliminated a huge risk. I am now vigilant about developing any symptoms. I am glad that I went and have been cleared for a six month visit, which helps. 

 

Denise 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1707
Joined: Jun 2015
So glad your visit went well, Denise! Congrats on your continued dance with Ned. 
 
Love and hugs,
Cindi

 

BluebirdOne
Posts: 366
Joined: Jul 2018

While the experience was nerve wracking, I hope that people get the take away that having your checkup can be ok, even in a large facility like Mayo. I am so pleased to be NED, and to be cleared for 6 month visits. We can do this if we are careful. There is no guarantee of anything these days, but hopefully, I will not come down with the Covid. One could not be more careful, so the trade off is a risk but also the risk of the cancer killing me if I did not have the exam is substantial. Everyday is one day of NED, which hoepfully will continue. 

Denise 

MAbound
Posts: 1091
Joined: Jun 2016

Glad you got that taken care of and it sounds like you did everything you could to be safe. Sleep well.

BluebirdOne
Posts: 366
Joined: Jul 2018

I won't know for another 10 days or so if I caught anything, but we did everything we could to limit any risk we faced. I am now cleared until November so hopefully there will be safer times ahead. 

 

Denise 

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