Post # 1
Hello, regular bee going anon. I am now in the process of being tested due to suspected endometrial cancer, I just want to have people’s experiences with a cancer diagnosis, I’m having an ultrasound/biopsy soon but haven’t recieved my letter yet with an appointment. What were timelines like? I just feel in limbo waiting to see what is happening.
Post # 2
I’m sorry. Hoping it is benign. The testing/waiting part is the worst. Uncertainty can wreck havoc. Try not to get too far ahead of yourself, but do push for your care. I tried to get everything scheduled as quickly as possible so that I wouldn’t have to wait and worry too much. Started with mammogram, MRI, biopsy, then lumpectomy, chemo, and radiation. However, most biopsies are benign, so don’t assume anything yet. By The Way, that was 10 years ago and I’m doing great. Good luck.
Post # 3
thank you for your reply, I’m sorry you went through that and I’m glad you are doing well! I know the chances are it’s benign, but cancer is riddled through out my family and despite only being 23 I wouldn’t be the youngest to be diagnosed (or even die) from cancer in my family (my 12 year old cousin died of cancer from a brain tumour) so my thoughts automatically go to worst case scenario, and I’m actually in A LOT of pain. But they won’t give me pain meds because I’m breastfeeding. I’m in two minds whether to stop breastfeeding so I can get pain meds that actually work but at the same time I don’t want to stop unnecessarily.
It’s only been a few days, but it sucks to be waiting for a letter for an appointment that May change my life
Post # 4
I have no advice, but I wanted to give you a hug from across the internet world!!!! I wish you a fast appointment date and positive news!!!
Post # 5
Big hugs to you! My only intimate knowledge is from my daughter’s diagnosis. Hers was considered emergent because the pressure on her spinal cord was causing paralysis so they started treatment right away and then did the testing while she was in the hospital – it went VERY quickly. However, they did tell me that her case was really unusual in terms of timing and that most patients wait weeks/months for all of the testing to be completed and a treatment plan in place.
I do have a friend right now who is dealing with a cancer diagnosis. The timing seems to have been dragging on forever because she is waiting for a transplant and is not a candidate for chemo or other treatment options, but they are following up on repeat CT scans/MRIs regularly to check status of the tumor(s).
ETA: agree with a previous poster to push for your medical care. I used to be intimidated by doctors, but realized during the course of my daughter’s care that they’re human just like I am. Once knowing that, I felt much more empowered to advocate for my daughter and push for what I felt was best for her. You know how you’re feeling and if you feel that they’re not addressing things that are concerning you, definitely speak up!
Best wishes to you – I hope everything comes back as non cancerous.
Post # 6
Hey there, best of luck with all of this. My husband was just recently diagnosed with a rare cancer, especially rare as it’s usually an older person’s cancer and he’s in his 30’s. It took three months + a surgery to get an official diagnosis. Timelines vary greatly depending on the type of cancer, how serious it seems, etc. The waiting is the hardest part. My best advice I can think to give to you is you have to be your own advocate. Don’t be afraid to call if you haven’t received the letter yet. Learn as much as you can (I recommend SmartPatients boards online) and just know sometimes you have to be assertive to get the answers you want. Not saying you’re not assertive of course idk, I was just surprised by how much following up my husband and I had to do about scheduling tests and receiving results.
BEST OF LUCK TO YOU!
Post # 7
Thank you everyone for your replies, I’m going to ring up tomorrow and ask if my appointment has been booked yet. I can’t stand the waiting for the letter and I have no idea what im going to say to my work, I’ve only just gone back from maternity leave! How do you get the time off?
Post # 8
I am sorry that you are going through this, Bee. The waiting must be awful. Lots of positive energy coming your way.
Post # 9
Got my appointment through today, it’s on the 18th of September!! 3 weeks after being referred?! Is this normal??? It’s such a long wait!
Post # 10
Sounding you good vibes and positive thoughts.
Post # 11
The waiting is harrowing. It’s not fair. Thinking of you and sending positive thoughts your way.
Post # 12
I would call the doctor’s office and ask if there is an earlier appointment. I would also give them your cell phone number in case another patient cancels their appointment.
Post # 13
From my experience with the same thing (suspected endometrial cancer), the wait is standard. It feels like FOREVER, but three weeks makes little difference in the spread of the disease (if it is there). They did put me on the cancellation list to call me if they could get me in earlier.
I had prolific bleeding (to the point I was dangerously anemic). Indeed, it was like a VERY heavy period that never ended. I underwent endometrial ablation because of it, and they took a sample for testing. It came back as pre-cancerous.
So I had a hysterectomy, keeping my ovaries and lymph nodes with the understanding that if I came back positive for endometrial cancer I would have to have the lymph nodes and ovaries removed in a separate surgery. I was VERY lucky that things did not come back cancerous (though I still wonder if the ablation affected that), so I did not need further surgery or treatment.
You will be in my thoughts. I hope for the best for you, and that you do not have cancer.
Post # 14
I work as an oncology nurse in the US so can only tell you what I have seen in my clinic which may or may not be exactly like yours!
A three week wait isn’t unusual for a biopsy. Generally the surgery or interventional radiology (depending on your doctors, either of those departments might do a biopsy) schedules are pretty full up much closer than that. I would check to be sure and let them know you are open to being on the waitlist if they have a cancellation sooner! Where I work, a full result from a biopsy takes 5-7 days to get all the information they need. Our docs usually schedule a follow up about 8-10 days post biopsy to be sure the results are in as if ends up being certain types they run even more tests to determine things about it. You will also likely have more imaging like CT scan/MRI to look at the actual area plus possibly a PET scan which is a full body scan that checks to be sure the cancer hasn’t spread. Those usually take a week or two to get scheduled and resulted depending on the availability of the machines to do the scans.
The waiting is the worst part! If it comes back positive, they will likely schedule you to talk to a surgeon, an oncologist, possibly a radiation oncologist, genetics counselor and if you don’t have kids yet and may want them in the future, a reproductive health doctor to discuss options for fertility preservation. Depending on the size of the clinic you go to, they likely also have a social worker and nurse navigator who help you coordinate with all the other specialist.
Depending on your specific diagnosis (if it is cancer) there are usually three modes of treatment for endometrial cancers. It might include a combo of surgery,chemotherapy and radiation. The order depends on the exact diagnosis and the results of your scans.
My biggest tip to patients is always bring someone with you to appointments that can help you listen and remember what the doctor says. Don’t feel weird about taking notes, coming with a list of questions and asking if you don’t understand something. If it would help you, ask the docitors if they are okay with you recording the appointment to be able to listen to later and remember everything they told you. The other tip is if your community has support groups for cancer patients, go! Having other people around you who understand what you’re going through is helpful. Ask the clinic about what patient resources they have and utilize them.
I hope everything turns out to be benign but also know with all the innovations coming out in chemo, the availability of different modes of surgery and radiation, there are lots of really positive outcomes for patients now!
Post # 15
this is what I’m going through right now, the REALLY heavy bleeding, it’s super painful as well 😔 I feel awful and have been bleeding through super tampons and pads and still running to the toilet in the morning with blood literally dripping down my legs.
i really want to avoid a hysterectomy, I’d love a sibling for my daughter and it’s would make me incredibly sad if I couldn’t ever experience it again. Plus the fear of super early menopause is very real. The whole thing is really scary, and my partner doesn’t think he’ll be able to get the time off to come with me 😔 meaning I will be alone. Luckily I have a very loving and trusted friend who has agreed to take our daughter for the appointment.