It's been 7 days since I found out I have cancer....No phone call yet from Oncologist Gynecologist..

Janet100

It's been 7 days since I found out I have cancer....No phone call yet from Oncologist Gynecologist..

Kp2018

First, my heart goes out to you for having received the news about your diagnosis.

It is awful to be left hanging and not hearing anything from relevant providers. Do you know if your doctor has made a referral to an oncologist, and, if so, the name of the oncologist? If so, I wouldn't hesitate to contact the office of the oncologist to find out when you have an appointment to discuss treatment. I can tell you from experience that once you get a treatment plan, you'll feel so much better.

Another question; Does your cancer treatment center have a cancer navigator? Such a person can be enormously helpful in letting you know what's going on and what to expect.

By all means, be proactive in making calls and nudging the communication and treatment process along. And, as you'll hear from others on this site, you may want to seek treatment at a NCI designated comprehensive cancer treatment center. https://www.cancer.gov/research/infrastructure/cancer-centers

My very best to you as you process your diagnosis and embark on your treatment journey.

Lynne-I-Am

Things seem to move at a snails pace sometimes when you are first diagnosed then surprisingly move extremely fast. I was diagnosed with ovarian cancer by a CT scan I demanded my gp order after months of being misdiagnosed. My gp then told me to see my gynecologist who in turn referred me to a gynecologist oncologist. It took two weeks for that appointment, but once I was seen and examined, it was a rush of port placement and the start of chemo. I totally agree with Kp2018 about being proactive, I might not be here otherwise. It is very important you follow up and double check any and all appointments and orders through your treatment process. Also, when you do see your gynecologist oncologist, take someone with you. Have specific questions written down you want to ask and in turn write down his responses and any additional information he imparts. The first visit with your new doctor can be a very emotional one. I want you to know, you are taking a very important right first step in having a gynecologist oncologist head your medical care. These specialists have the additional education and experience needed by those diagnosed with any gynecological cancer.

legaljen1969

I agree with Lynne-I-Am.

@Janet100- I don't know if you have gone so far in your diagnosis that you know the stage or how advanced things are. If not, please take a breath and consider perhaps it is just that they have detected "something" that warrants further examination- something that appears to be cancer. I was diagnosed with breast cancer about a year ago. The radiologist told me it was "cancer." My primary care doctor told me it was "cancer." Off the anxiety circus I went. I collected all my "worry monkeys" and prepared for the world tour of panic and prepared for the "final show." (I am not making light of your situation, but of my own). You are getting your diagnosis at a crazy time of year too. I was in your boat last year. I found out just before Thanksgiving that there was some concern. My referrals started flowing and I finally got my first appointment about a week after Thanksgiving.

My treatment team is headed up by a surgeon (yeah, like that's not enough to scare a person that the head of the treatment team is someone who is ready to operate on you.) She was amazing. Almost all of my anxiety went away after my first meeting with her. She explained to me that my mammogram seemed to indicate I had Stage 0 DCIS (ductal carcinoma in situ). It was very well contained at that time. I started doing my own "research" and made myself crazy and had almost talked myself out of surgery and was going to be adamant about it. She was very familiar with all of the articles I had read and she specifically addressed each and every point I made. She wasn't really of a "wait and see" opinion- as she wanted to be sure nothing metastasized. I had a biopsy by December 10, and it showed a little larger area but still nothing to rush to surgery. Still Stage "0." We developed the "game plan" and I felt like I was in good hands and had some control back.

Then, by my own choice, things slowed down a bit so I could enjoy the holidays- not knowing what I would be facing once the wheels were set in motion. We had a family cruise planned for my 50th and my father's 80th birthdays. I didn't want to cancel if I didn't have to do so. My doctor said "let's just get through the holidays and we can deal with this in January. I don't want to be still talking about it in June, but we can take a little breather." All this to say that maybe what your regular doctor and oncology referral are seeing doesn't indicate a "rush" and they are just getting the pieces put together.

I met my radiation oncologist and medical oncologist on New Year's Eve. As they both, laughingly, reminded me that cancer takes no holiday. My medical oncologist did say he probably wouldn't be scheduling "routine office visits" for NYE this year.

I had a lumpectomy in January, which revealed larger margins of disease. I had a mastectomy in February, but it took radiation off the table as far as need for treatment (yay me. Seriously). I had three weeks recovery time out of work, and came back to work just as the country shut down for COVID. It's been one crazy year.

I have a very diligent care team, but they are all super laid back and easy going. Maybe the fact there isn't a "rush" means the doctors don't see anything to rush. But it never hurts to be your own advocate and follow up. You don't want to wait too long or be left hanging, but it could be a good sign too.

It really stinks getting the diagnosis just before the holidays and people are in holiday mode. It's like going to the ER on the weekend. Nobody wants to do that.

The schedule will ebb and flow. Sometimes it is super slow and other times it takes off. If you need someone to chat with about the stop/start of a holiday diagnosis- I am here.

Teachertina

Sorry you’re going through this. We have all heard those words. I’m glad you found us on this site! Much support and understanding can be found here. Make some calls to find out what you need to know. Don’t wait for them. I’m sure they will have excuses for not calling you. You have to be your own advocate now. Don’t hesitate to ask for information. Your life could depend on it. Good luck to you. Keep us posted on your journey.

Jayne

Hi, Janet100 - It's terrible to sit and wait during what is most likely the most stressful event of our lives! I would call and ask for a status for your own piece of mind. Or try sending a note via your patient portal if you have one. Although I'm not prone to it, I have found that being a squeaky wheel with the appointment side of things is a necessity. I'm really sorry you are dealing with this during the holidays AND a pandemic. As you can see there are other very knowledgable and supportive folks on this site. I am a metastatic colon cancer survivor but we all have similar perspectives on the cancer experience. Sending good thoughts and wishes your way.

Bengal

Agree heartily with all the others. First, so sorry you are facing this. Hard enough under "normal" circumstances (nothing normal about it) but facing this now in 2020 must be daunting. The waiting is the worst. I have a different type of cancer but I remember I never saw or talked to oncologist until after my surgery. I thought it a little strange at the time but until the surgery and pathology she couldn't decide her plan of treatment. Patience is hard. And, for sure, you have to learn to be your own best advocate. Best of luck and know you are not alone.

legaljen1969

Please understand that I am not saying "Let it ride." Yes, we have to be our own advocate. I know the past seven or eight days have probably seemed like 7-8 weeks or maybe even 7-8 months. That time drags. That said, you definitely hit this at a weird time. If you literally got your diagnosis 7-8 days ago, then consider that many, if not most, doctors offices were closed Thursday through Sunday for the Thanksgiving holiday. That puts you and them at a 4 day "disadvantage." It may be taking longer to get the referral processed with the days people were off. While the doctors offices may have been working on limited hours, my bet is the insurance folks probably took the full holiday. I don't know. Does your doctor have a web portal where you can see what has been done? Your insurance? That helped me a lot to see who I needed to be contacting to see where things might be hung up.

I am making some assumptions, and some of them may be way off base. I am assuming you are waiting for an initial visit with the gynecologist/oncologist. If you are waiting for a referral, perhaps you can call someone at your main doctor's office and find out from them if the referral has been processed or if it's waiting for approval or what. As soon as you know the referral has been made and/or approved, make that initial phone call. I had my medical records, images, referral papers and everything ready to drop off a hard copy as soon as I knew the referral was approved. I was all over it. LOL

If you have already seen this person and you are an established patient, it's definitely time to be the squeaky wheel with them. I am the personality that usually tries to deflect though or soften my request. My first phone call was "I know everyone is busy with holidays and their patient load, but I saw that my referral had been approved and I am supposed to see Dr. M. I hadn't heard from anyone yet, so I wanted to be sure you weren't waiting for a call from me to get things going."

TerriL

I'm sorry you are dealing with this. I would definitely call the referring doctor's office to make sure things have been started. If the referral has been sent, you can definitely call the oncologist to make an appointment. I have had to be the squeaky wheel many times when dealing with referrals. I know the waiting at the beginning was the hardest for me. Once there was a plan in place I felt much better.

Jane1212

My GYN made the set up with the Oncologist and they called me probably a week after the call from my GYN for the appointment. With Thanksgiving and Covid, they might just be behind. I'd give the GYN a call and make sure they have called the ONC. Then there was a wait for the ONC appt. It was to be another couple of months before my surgery but I got a cancelation so surgery was like 3 weeks after the appt with the ONC.

Carool

I have nothing to add to the excellent advice everyone’s given here. I just want to wish you all the best.

alivenwell

Sometimes technicians cannot tell you anything until the oncologist examines results. If the doctor knows, he/she may need to decide on the best form of treatment/surgery for your quick recovery. I would think they would want to know if it spread somewhere else which may require a CT Scan. They usually start out with an estimate of the cost and whether insurance will approve payment for treatment.

CookiesMom

Call and ask if you've been referred first. Then, call that Dr./Onc. to see if they have a scheduled appointment for you. It may seem slow, but they need to review your files and with COVID-19 out there, as above, things are at a slower pace for everyone. There are tests that need to be completed, possibly genetic testing required and discussion. Ask about a 2d opinion in the first meeting. Take someone with you if you haven't gone yet. You will be overwhelmed, its normal. And don't be afraid to ask questions, ALL you have. And if you don't get answers, ask them again until you get answers AND understand them. If you're techie, you could ask Dr. if you could record the conversation. My Dr. told me initially he would refer if I wanted, as it could bring more information if for no other reason. I asked for that 2d opinion and did get further information. And my treatment did change based on test results reviewed and my own lifestyle and whatever else. Once things start, it will seem like a roller coaster with all the appointments, treatment visits, and followup appointments. You can do this. Keep telling yourself that. Prayers. And don't be afraid to ask ANY question. They've heard it all.

CookiesMom

I reread one comment above, Try not to google your cancer (yet). I know how hard it is to wait. I had to for 2 weeks after I left hospital. Staff Dr. says you have cancer - period. Not what kind, how bad, nothing. You'll scare the dickens out of yourself! Ask your Onc. when you do get an appointment and see Dr. what are the best sources of information that are trustworthy. Ask exactly what type of cancer-the name, and the sub-category if there is one. They usually know websites out there and can give you some ideas. Or even the nurses, PA, NP associated with the office. My Dr. gave me 2 and strongly suggested I do not go deeper in the beginning because I would scare myself. I googled for 3 days straight afterwards. One thing I learned, no matter your form of cancer, make sure to check the Copyright Date usually at the top of any 'article' or information page. With so much research there have been many new things even in the past 3-5 years from testing, to treatments to length of life. Some will tell you 1 year and today could be 15-20 or more years. That 1 year could have been published many years ago, some articles/information pages go back 20 years and have not been updated. Stay away from those other than learning about symptoms and general information. Treatments are changing everyday for many cancers for the good.

Carool

Hi, Janet100. Have you spoken with your oncologist and gynecologist? Do you have a treatment plan or some idea of what comes next?

legaljen1969

Janet, have you heard anything else yet? We are all thinking about you. We hope you will be back. No pressure. Whenever you are ready. Know you have lots of prayer warriors here for you.

alivenwell

I was fortunate to have a health coach. That person helped me avoid nausea, introduced me to an abdominal binder, and gave me medical terminology for a wig (cranial prosthesis). The formal name for a wig can be covered by insurance.
I had Oxipalatin. Side effects could be avoided by eating all the foods I avoided prior to chemo (simple carbs such as white rice, potatoes, bread). Ginger candy was recommended. The chocolate I ate during treatment tasted like the foil was never removed. We had a running joke about platelet cookies. Our local bakery made cookies that mimicked platelets. During treatment, if my platelet count was too low, I would leave. Otherwise, they would proceed to pump chemo in me. I had a port in my shoulder. They made me get surgery to have the port inserted before treatment; surgery to have the port removed after treatment. On my last day, we brought platelet cookies.