Newly diagnosed, question regarding scans prior to surgery

Forherself

Asking Doctor advice.

My husband is an MD.  He advised me to ask this question of the gyneoncologist.  "What would you do if you were receiving the diagnosis I have?" It is a good way to get their opinion.   And have you ever tried Salonpas patches.  I get them at Costco.  They do contain aspirin but without upsetting your stomach.  They help me a lot with pain.  They may be part of your pain management after surgery.

 

jan9wils

I had robot assisted

I had robot assisted hysterectomy.  I stayed the night in the hospital and came home the next day.  My pain was from gas. Walking and deep breathing helped.  Pain medication did not help with the gas so I only took one tablet.  I spent 3 nights sleeping in a recliner. It was much easier getting up.  My biopsy showed grade 1 prior to my hysterectomy but the biopsy afterward it was grade 2. I did not have a scan prior to my surgery but I've had several since. I'm hoping your hysterectomy can be done laparoscopically. 

Jan

 

Harmanygroves

Ups and Downs

Physically, I am doing much better, although I still have pain intermittently. I have moments of feeling really frustrated and depressed, but am now on some anti depressants so am doing better. I just learned a few days ago that my very oldest and dearest friend has breast cancer, so I'm on edge. I think that generally, having the experience of going through cancer - with your husband - is going to make you a much stronger advocate for yourself. Similarly, I am now a much better person for my friend. I have to remind myself that I can be my best and healthiest self with some focus. I look forward to getting to know you better and will be so glad to follow you. Thanks for your kind words. I'm here for you, too. 

Momschooling

That's a good idea, asking

That's a good idea, asking the question that way. I have not heard of salonpas, thanks for that info, I will look into that. I have acid reflux so I am afraid to use much motrin or aspirin products but if it's only going through the skin, that should be better.

Momschooling

I am sorry to hear about your

I am sorry to hear about your struggles and your friends diagnosis but glad you are getting better. It seems so many people are going through cancer journeys right now, and I never realized it until my husband started his. I do think his situation has helped me understand everything a bit better, we for example are both at the same cancer center now and I know the system. I know a lot of the lingo and can understand what different terminology means compared to prior 2019. When my husband was first diagnosed I didn't understand anything and thought he might be gone in months, but he's still around and doing pretty well This gives me hope...

Momschooling

I hope mine can be done

I hope mine can be done laparoscopically to, I am scared of the other way but the dr claims the up and down abdominal cut has less bleeding than the bikini line version. I see you have really been on a journey of many ups and downs from your profile, best wishes to you on your fight.

NoTimeForCancer

Darn Momschooling, it seems

Darn Momschooling, it seems to me you have had enough of your share of cancer, and while I had hoped I was the only sister in my family to get it that is not the case.  It makes sense to compare what your husband had and how the tests apply.  I 'know' my cancer and find myself completely in the dark when looking at my sisters. 

First, this is a great group of women, as you have already found out, and they truly want to know how everything goes in surgery, if treatment is required, and lots of shoulders to lean on. 

To your point, I was 48 when I was diagnosed (dx), live alone, and only had a CT scan, some blood work, and a chest xray before surgery.  I have a flight of stairs and pretty much lived downstairs on the couch but did take it slow to get a shower in.  I took the pain pills for 3 days and then gave up.  I didn't feel much of a difference between the pain pills and tylenol. 

I want to tell you how glad I am to hear you listened to your body and got it checked out.  You also have a doctor who realized this needed to be in the hands of a gyn onc which is fantastic. 

There are many amazing and inspirational women on here to walk beside you on this journey.

BluebirdOne

You might ask again for a baseline CT or MRI

Welcome to the board, Momschooling. After my hysteroscopy I had to go to the ER due to excrutiating abdominal pain. They were afraid of a puncture from the procedure, so they did a baseline CT to rule out what was causing my pain. I did not know that it was a lucky thing I got the scan, after getting the run around from my doctor and the GO he recommended I see, we contacted Mayo Clinic for a 2nd opinion who wanted to review the scan, my pathology, etc., in preparation for surgery. I was dx with 1a serous, with LVSI. I had another CT scan upon finishing treatment, about 4 months after the 1st one in the ER. They were so happy to have had the 1st scan to compare as serous is very aggressive and they were able to see that there was no progression after surgery, chemo, radiation. I had another scan 6 months later, and again, they were able to use the two prior scans to confirm I was still NED, once with all of my organs still intact and one after hysterectomy/BSO. Perhaps this is not the case with endometriod dx, but I would ask again. The biggest difference is that you have pelvic pain that they are ignoring, you have already been dx with cancer but not staged, so I would think a scan would be very important at this point. My experience and those of a few others on this board is one of under treatment, downplaying of risk, (I had no idea serous uterine cancer was a thing until I was dx with it and was devastated after all the happy talk from my orgininal doctor who did not prepare me at all) and not taking me seriously. Good luck to you and keep in touch.

Denise

MoeKay

I would want a second opinion and scan in your situation

A few things jumped out at me when I read your post.  I had an ultrasound before surgery which showed what the radiologist concluded was a "probable fibroid."  However, it turned out not to be a fibroid at all, but the major site of my endometrial cancer.  While I hope that what are being called fibroids on your ultrasound are actually fibroids, you don't know that at this point.  Also, I had no pain whatsoever, but first saw my gynecologic oncologist for a consult on May 4th and I had my surgery on May 12th, eight days later.  I also went for a second opinion at Johns Hopkins inbetween my first gyn-onc appointment and the surgery.  I'm wondering why, despite the fact that you are in pain, you are being made to wait two months for surgery.  I was treated in 1999, and I realize many things have changed over the years, but it seems as though you are being made to wait an exceedingly long time for surgery given the fact that you are in extreme pain. 

If I were in your shoes, I would get another opinion and see if the second opinion gyn-onc will order a scan to better assess your current status. 

Wishing you all the best.

FourBee

Mom Schooling

Hi There,

I read your post and was a little surprised at how long you will need to wait. There are doctors that will do a hysterectomy via your vaginal canal so that there is no need to wait for "robotic" surgery. I urge you to look elsewhere no matter how good you feel about your doctor at the moment. Once you get a second (and/or third) opinion then you can decide whether to stay with the current plan. Remember, your cancer may be slow growing but those cells are multiplying.

Wishing you wellness.

FourBee

Momschooling

Covid delaying surgery

Hi, 

Covid is delaying surgery sadly, and yes no one seems concerned about my pain...it's actually better than it was 3 months ago but is still there coming and going My dr who did the ultrasound and the ultra sound place that did a more in depth scanning, both said fibroids and didn't call it a possibility, simply that it was fibroids and I had numerous. I don't have another option in my state, I am in the number 1 place and it is ranked. If we had better places nearby, I would seek out more opinions. Right now I am just preparing for the surgery which seems to be creeping upon me fast, and trying to keep my mind together.

Momschooling

Hi, I did ask but they

Hi, I did ask but they refused They seem to have a system and do not veer off for any reason. I am now just 5 weeks from surgery and preparing for that (bought everything recommended). Sorry I have been MIA on these boards but I started having panic attacks and realized I needed to not overload myself with information and just take one step at a time... 

Momschooling

Update: I ended up a Dana Farber after the nagging feeling and constant dread/anxiety about the other location. It was a totally different experience vs the previous place. Very caring doctors and they explained everything so well in a helpful way. They also did a read on my biopsy which said definitely there was cancer. The surgery has been a bit of a challenge, in quite some pain in one particular area and I will get checked out today to see what's happening. I had a laparoscopy with a mini lap and ovaries were spared, 2 nodes removed, I went home same day (staying at my son's place). I am so grateful I had such bad fibroids to push me to get checked out. The Dr said that definitely was the cause of all my pain and back pain. Loads of fibroids, some larger and degenerative causing miserable symptoms. If they hadn't been hurting me, I wouldn't have known about this very early cancer as I had no bleeding problems. I have grade1 stage 1a , 8 percent myometrial involved, it's 4cm. Everything came back negative for spread so I am just feeling very grateful and ready to push though this hysterectomy healing process. Best wishes to all of you on this journey ❤️

Harmanygroves

https://csn.cancer.org/discussion/comment/1692450#Comment_1692450

This outcome sounds so positive. I'm so glad you went elsewhere. Having to wait, in pain, was not good. Your Grade 1, Stage 1 A ....CONGRATS! Surgery is always so hard, but you really advocated for yourself and got to a place where they would do right by you. Happy for you.

Momschooling

https://csn.cancer.org/discussion/comment/1692458#Comment_1692458

Thank you 💓 If anyone out there thinks they don't have options (like me) just talk to these better places, you may be surprised that your insurance will cover.

cmb

I hope the pain you're having right now goes away soon, but removing all those fibroids should relieve the main source of the pain you've had for so long. I'm happy to hear that your cancer was caught early and that you were able to find the help you needed from a different medical facility. Now that surgery is over, this is a great way to start off the new year!

BluebirdOne

https://csn.cancer.org/discussion/comment/1692450#Comment_1692450

Congrats to you, Momschooling. Grade 1, Stage 1a! Such good news! Thanks for letting us know.

Momschooling

https://csn.cancer.org/discussion/comment/1692462#Comment_1692462

Thank you :), yes the doctor thinks my back pain especially was caused by the numerous large and degenerative fibroids.

Momschooling

https://csn.cancer.org/discussion/comment/1692479#Comment_1692479

Thank you, yes I know many months ago I was searching for people with similar circumstances and wanted to see the outcomes and often times there would be no updates, hoping this helps ease someone's mind.

Ribbons

I’m happy that you persevered and found a better place! It is so important to find the best facility you can. If you can find a great Dr and a great place that work together that makes a world of difference. I’m lucky I have both. Hoping you have a quick recovery.