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Supposed to start Brachytherapy on Monday amidst covid-19 outbreak in NYS

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I desperately need some advice.  I don't know what to do, and I feel like my doctors are afraid to advise me one way or the other.

First, I live in NYS where the outbreak is most active, though I am in upstate NY far away from NYC.  My county currently has 46 positives, 200 in quarantine, but are refusing to test anyone that is not displaying the listed CDC symptoms. Our first local death was a housekeeping employee at the hospital, but it remains unclear if he was working while he was sick. 

My husband and I have been isolating for 8 days in our home, with no outside contact other than grocery deliveries left at our door and then wiped down before taken inside.

I am scheduled to begin brachytherapy next week at the Lipson Cancer Center, a specialty facility at one of our main hospitals in Rochester. This was already postponed once because my vaginal cuff was not fully healed. The radiation oncologist said I need to have the bracytherapy within 6 months of surgery (Dec 27) or it would no longer be effective after that.

Here is some other information about me. 

  • I will be 60 in May.
  • My uterine cancer was adenocarcinoma stage 1a with no lymph node involvement. My oncologists said that my current chances of recurrance are 7% and with HDR brachy it drops to 3%.
  • I have stage 3 CKD and a recent blood test showed my gfr at 28, which is very low. You need 3 tests below 30 to be reclassified as stage 4. I am very worried about this.
  • I am a T2 diabetic who was fully controlling prior to cancer diagnosis. I was running very high before my surgery (400), and it has improved a lot during my recover . But still higher than normal (140-160)
  • I am obese by medical definitions.
  • I struggled healing from the total hysterectomy.  It seems to have taken me twice as long as what most report, and I had significant pain all the way through 8 weeks, though I am much improved now at 12 weeks.

The cancer center is attached to the hospital but has private entrance and parking lot. There is no other way in than through their front door. They are screening people at the entrance (including temp and questions), and only patient and one family member are granted access. Only patients are permitted in the treatment area. They told me I could wear a mask and gloves.

My appointment on Monday is for exam and simulation. And then the actual treatment would begin one or two weeks after across a 2 1/2 week period. They told me if I wanted to postpone I could call Monday morning and they would be okay with it.

I don't know what to do!  Is covid-19 exposure a greater risk than cancer recurrance for me?  I have it in my head that it I became infected I would not survive because of my underlying conditions, age, and everything I hear and read.  I am contemplating postponing for just 2 weeks and re-assess our local conditions.

I welcome all opinions, and am especially interested in opinions from anyone that is a healthcare worker.

 

 

zsazsa1
Posts: 549
Joined: Oct 2018

Go get the brachy done.  Wear a mask and gloves if you have them, and if not, wear a bandana and glasses and wash hands frequently.  The cancer center has people who are highly motivated to protect themselves from the virus.  Your chances of contracting it there are miniscule.

 

Do NOT postpone.  The epidemic is only just starting.  I doubt it will be over in even 3-4 months.  Not to be morbid, but we're going to lose a lot of mature medical people.  Today is better than tomorrow, is better than the next day.  Go get it done.

Forherself's picture
Forherself
Posts: 477
Joined: Jan 2019

Go ahead and start.  Just get in your car and don't go anywhere else.   Take hand sanitizer and wash your hands.

MAbound
Posts: 1094
Joined: Jun 2016

 

I had pelvic radiation with a vaginal boost, so a lot more treatments. It took almost 6 months for my WBCs and other blood work to return to normal, so I had to be careful about infection for quite a while after I finished treatment. I could not be with my father before he passed (he had norovirus) or attend his funeral because of that. This virus is no joke and your concerns are well-founded, but I think I had a lot more radiation because I had an advanced stage cancer. 

I think it would be really helpful to hear from others who only had the brachy like what is being proposed for you. They could give a better idea of what happens to your immune system for that amount of radiation. You also have impaired ability to heal that is concerning because there would be some damage from the radiation that would need to heal. There is real risk that radiation would be harder on you than it is for others who have gotten through it relatively easily. We are not all the same.

Given all of your other medical issues, I think I would also be hesitating if I were in your shoes. You have the less aggressive form of uterine cancer, but I can't remember what grade you are. If it's the lowest grade and the lowest stage it might actually be safer to save radiation for if you have a recurrence given everything going on with you and in the wider world. The ideal is to do all that you can to prevent or reduce the odds of recurrence, but these are not normal times and your renal and diabetes status put you in such a vulnerable situation that many don't have on top of having the cancer.

I really can't see pushing you to have radiation that could be reasonably defered to save as an option for if and when it's proven to be needed. It's a crap shoot no matter what you do, but I kind of think you are in a good place as far as the cancer goes to defer the radiation. Sorry that my opinion is different from others, but that's my two cents worth. 

CancerFreeSunny
Posts: 24
Joined: Sep 2018

I also heard wearing glasses will protect your eyes, should some inconciderate person sneeze near you or cough without covering their mouth. I heard the glass on the eye frames prevents droplets from getting in your eyes, one of the forms of transmission. 

EZLiving66's picture
EZLiving66
Posts: 1456
Joined: Oct 2015

I'm no doctor so you're just getting advice based on what happened to me. I had (have) Stage II or III (wasn't fully staged because no lymph nodes were taken) but my cancer was a Grade 3 - UPSC. I only made it through three of six prescribed chemos. I asked my oncologist/gynecologist what about radiation. He told me he was saving it for when "it" comes back. Well, it will be five years this September 30th and I'm still waiting for that radiation. 

Based on MY EXPERIENCE only, I am glad I did not have the radiation. And yes, I might need it in the future since the UPSC is a sneaky cancer that can come back even after ten years. I also have T2, obese, kidney problems and god-knows-what-else and was 63 when this all happened.

This is just my opinion. Please let us know how it all goes. We truly care here!!

Love,

Eldri

MoeKay
Posts: 306
Joined: Feb 2004

I'm sorry for your current predicament.  Going through cancer treatment is never easy, but the stress added by the coronavirus situation takes things to a whole new level.   

In reviewing all of your prior posts, I saw that there was a discrepancy in the grading of your cancer (grade 2 on D&C, grade 1 on hysterectomy).  If I were in your situation, I would get a second pathology review from another major cancer center to see if another gynecologic pathologist agrees with your present grade 2 designation.  You also mentioned that your tumor arose in the lower uterine segment, which is another risk factor that likely led to the recommendation for your brachytherapy.  My tumor also arose in the lower uterine segment and was grade 2, and I had brachytherapy as well as external beam radiation back in 1999.  Do you know whether there were other reasons for the radiation oncologist's brachytherapy recommendation?

After the second pathology review, if I were in your situation, I would also request a second opinion on your need for radiation.  In the past, I referred someone to MD Anderson in Texas, and she was quite pleased and relieved with MDA's remote second opinion evaluation of her case.   In reading your prior posts, I saw where you stated "starting brachytherapy in March.  I'm scared, but I don't feel like any other choice is the right choice."  Also, you said in another post, "quite confident in the quality of the medical care and the prescribed treatment plan."  Given your above statements, you don't want to have any regrets if you do decide not to get radiation in the coming weeks.  You want your decision, to the extent possible, to be based on information rather than fear.  Therefore, I would seek out whatever additional medical opinions you can to ensure that you make a decision in your best interests. 

From what you stated, you will be entering a separate facility for the brachytherapy, not the hospital itself.  It sounds as though the facility is taking significant precautions to protect your health and safety.  I realize that you have a number of other medical conditions, so I am sure if I were in your situation, I would have similar concerns.  I know when I had a hip replacement, I opted to go to a specialty hospital, where all they did were orthopedic procedures, rather than the main hospital.  I thought that I would be much less likely to come home with an infection in addition to a new hip. The specialty hospital was a great experience and I never regretted the decision.

Best of luck and health to you!

 

 

 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Thank you everyone for your feedback.  It really was helpful.  

First, for clarity, I had already decided to go forward with the brachy prior to the COVID-19 outbreak. I consulted with my surgical oncologost, the radiation oncologist, and I met the pathologist (in person) who conducted the post-surgery diagnosis and staging.  She showed me my slides and the basis for the diagnosis.  All of them agree that the stage 1a and grade 2 results are accurate, even though they only found grade 1 cells after surgery,  They told me that the prior D&C had likely removed the grade 2 cells and they do often see the two grades merge in cell samples.  The radiation oncologist reviewed the reasons why the reasons to go forward with brachy. I do fall into risk categories for recurrance, and according to their algorithms my chances of reurrance drop from 7% to 3% after five doses of HDR.  

My quandry was having to go out into an "infected world" after 10 days of isolation in order to proceed with the brachy treatments.  I came to terms with it, and am taking extreme measures to protect myself, which I will describe below.  In my county, the outbreak is in early stages.  We have only about 160 confirmed cases of COVID-19, with 600 more people in mandatory quarantine and about 3000 presumed positives from community spread that have either not shown symptoms or cannot get tested.  We now have 100% business and school closures with the exception of essential services.  I do agree that it is only going to get worse, so if I can be done before the outbreak peaks here, then I can go back into isolation and be safe again.

 

EFFORTS TO STAY SAFE

I went for brachy simulation on Monday, and it was our first day out of the house in 10 days.  I had to get blood work at a lab first, and then we proceeded to the cancer center for my appointment. My husband stayed in the car the whole time. I wore the only mask I have, glasses, and carried a paper-bag purse containing only sanitizer, wipes, ID and phone.  i was impressed with the blood lab - all the techs wore masks, had the windows open for airflow, and were actively wiping down the chairs with disinfectant.  I was the only person there when I arrived.  I was in and out in less than 10 minutes and as I left one of the techs advised me to dispense my hand sanitizer in one hand ahead of time and then use the other hand for doorknobs and railings, then when outside wipe my hands for 30 seconds or more.  It was great advice.

When I arrived at the cancer center my husband dropped me off - they screened me at the door and the nurse wanted to take an oral temperature.  I refused to take my mask off so she conceeded and took my forehead temperature, which ended up being fine at 97.7 degrees. Then I had to take the elevator down one floor and did the same thing as before - pre-dipensed the sanitizer in my hand so I could disinfect after touching anything.  I was the only one, but right before the doors closed someone rushed in, and I immediately jumped out of the elevator.  It was an employee, perhaps a nurse or a tech, and when she saw how I reacted, she apologized profusely... but it just goes to show that even medical professionals forget about social distancing protocols.

I approached the reception desk to check in and kept my distance and didn't touch anything. I noticed the waiting room had at least 15 people all sitting close together and chit chatting like it was any other day, which was shocking to say the least.  I mentioned to the receptionist that I did not want to wait there, so she called a nurse to come and get me so I could wait in an empty exam room.  The nurse told me everything had been wiped down before I was brought it and I could see streaks of disinfectant still on the surfaces.  When the doctor came in he sat across the room from me, and the techs kept as much distance as they could. while performing the necessary procedure.  I also used the sink in my exam room at least 3 times to wash my hands with soap and water.

At the end of my appointment, I walked outside where my husband was waiting in the car.  I wiped down everything I own, and I as I wiped each item, I tossed them one by one into the car through the passenger window. Then i dispensed sanitizer in my right hand, threw away my "paper bag purse", and wiped my hands thoroughly before I got in the car.  When we got home, hubby and I stripped out of our clothes in the garage (no jokes please) and took showers immediately including shampooing twice.  I don't think I could have been more careful.  I know it may sound like overkill, but this disease scares me.

 

ABOUT THE BRACHY SIMULATION

Now for the brachy simulation - It was effortless!  After I changed into a gown I was brought into a room with a giant CT scanner.  I laid on the table on my back with my knees bent. They asked me to gently let my knees fall outward to the sides.  there were no stirrups or anything - just me and the table.  The doctor showed me the cylinder - it looked a biy like a popsical but smooth plastic.  It was about 1 inch in diameter and about 8 inches long with a "handle/stick" on one end.  He asked me if it scared me and if I was okay with him inserting and I told him it was fine.  He told me to let him know if it hurt or caused pressure.  It didn't, and they removed it.  Then he asked if I thought I could handle one 1/4" wider in diameter.  I said yes.  This time when they inserted it, it did feel tight and it created a bit of pressure against my bladder so I felt like needed to urinate.  I told him that, he asked if I thought I could handle it for 10 minutes and I said yes.  He told me that what I described was exactly what they wanted - as the slight pressure ensures the cylinder is fitted tightly and delivers the most effective treatment.  Next, they asked me to bring my knees back together and straighten them on the table.  It was a little bit uncomfortable, but very tolerable.  From that position with the cylinder in place, they left the room and took the scans which took about 6 minutes.  Then they came back in and explained that for the actual treatment it would feel exactly the same except with an additional wire attached to the end of the cylinder a little tiny flutter feeliing when the radiation is actually delivered, which would only be 4-6 minutes.  

After I got dressed they gave me a special ID card to scan in when I arrive for my appointments.  They told me that I would only be there for 20-30 minutes in total for each of the five treatment appointments and that as soon as I scan in, they will come and get me right away.  My first treatment is tomorrow morning (Thursday) - I will come back and fill you in on that.  And I will follow the same safety measures I followed on Monday.

I will be completelly done by Aprll 9, and then I can go back into full isolation until this crazy virus passes.

I hope everyone stays well.

 Jill

Primavera's picture
Primavera
Posts: 219
Joined: Mar 2019

It will be easier after this. I had brachytherapy last year during the summer. Three treatments; but the simulation and the first treatment were done the same day and I had a catheter inserted and was left in a waiting room while they did calculations for about an hour. The other two treatments only took 20 min.

I was stage 1a, grade 3.

Good luck tomorrow. I work in NYC and live in NJ and haven't left my house for a week and half already. There were positive cases in our offices, although on floors above and on the one below. These are really scary times. Stay safe.

I'm coming back later to read more carefully how you did this "outing." I had a mammography and also a liver scan due in March, but I think I'm going to wait a few weeks.

zsazsa1
Posts: 549
Joined: Oct 2018

I think you did very, very well!  I am impressed that you are taking it so seriously, and handling it so well.  Keep it up like this, and you will do fine.  And no, it was not overkill AT ALL.  It sounds pretty much like what I've been doing - except that I don't bother with the hand sanitizer, because I just don't touch ANYTHING, and if I have to, I wash immediately afterwards at the nearest sink, using paper towels for anything I have to touch on my way out of the bathroom.  I also have sometimes worn vinyl gloves, but I find that just avoiding touching anything and washing frequently (while having the mask on to keep myself from touching my face) works better for me.

And I do the same stripping into the machine, and straight to the shower routine, also.  You're doing it just right.  Very impressive, since you didn't go to medical school or nursing school!

Fridays Child
Posts: 199
Joined: Jul 2019

Thank you for making me feel validated!  I had a CT scan recently.  I'd rather do it at their satellite office, but since they premedicate me for potential reaction, they insist on doing them at the hospital.  My husband dropped me off at the door, and I had my ID and insurance card in an envelope.  Had to sign the consent, after which I used their hand sanitizer before going to wash up.  I did not sit down in the waiting room.  At first no one else was there, but after a few people came in I went to walk in the hallway until they came for me.  The only thing I touched was the CT bed and they had me brace my arm on the machine to do the IV for contrast.  After leaving, I washed up again and, like y'all, threw all my clothes in the washer as I came in the house and went straight to the shower.  And we didn't even have any cases in my county at that time.  Every time I wonder if I'm overdoing it, I remind myself that so far we aren't sick!

June B
Posts: 1
Joined: Apr 2020

Hello and good evening My name is June,

Just trying to connect with others like myself. I  had my surgery..  a radical hystorectomy at Highland Hosptial in Rochester January 28th. I live 16 miles outside of Cooperstown NY.In March I had several HDB High does internal brachyradation treaments at Bassett Cancer Center.Basset Medical Center is where I also work. I only recently retured to work on April 6th walking into an invisible disease while trying to deal withthe slient one.My stress level is very high  especially after  being home for two months recovering  and not expose to  anyone or anything,I work on an locked unit in patient psychiatry while pts are being screened tested and isolated quarantine. I am frustrated my doctor did not put me on intermitant leave,I had asked him the response was" business as ususal."

 I do not think you are over doing it at all.I  was upset when I came in wearing a procdure mask due to having a slight cold and allergies and had to ask my team to wear face masks, they treated this like it was no big deal. I am frustrated  in the lack of any supprt other than the American Cancer Society and Cancercare.org  due to living in  a rural community with only the main hospital and the outside regional hospitals.

Please keep doing what you are doing and advocate for yourself to make sure your team is taking all precautions to keep you safe.

 

zsazsa1
Posts: 549
Joined: Oct 2018

I'm hearing more and more stories of friends, and relatives of friends, who ONLY were going to the grocery store once a week, and they caught it.  But this is in the NYC tristate region, and in cape cod, to which a lot of people from affected areas fled.

June, I am afraid that your job is putting you at risk.  I would see if there is any way that you could work from home, or be furloughed with pay and insurance, or be back on disability, or be transferred temporarily to a job that doesn't put you at such high risk.  The problem with inpatient locked psych is that these are people who are very possibly unable to have taken isolation precautions because of their psychiatric disorder.  Someone will bring it into the unit, and it will spread like wildfire, the way it spreads through nursing homes.  Even if you were masked and hand sanitized constantly, once it is in the unit, everyone will get it.

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