Hello all

Agania

Hello all,

This is my first time posting but I have been “stalking” the board the last couple of weeks reading some new and old treads to get an idea of what treatments and success rates others have had.   It seems that I am having a little bit of a different treatment plan than others but wanted to share my story, concerns, etc.   This is a little long - sorry about that but wanted to introduce myself and my journey thus far.  

I was diagnosed with low grade stage 1 uterine cancer in November of last year at age 29.  I was diagnosed after a biopsy in my gynecologists office.  I had been bleeding abnormally (hadn’t stopped bleeding in over 2 months), had severe cramps and blood clouts.  My gynecologist did a pap which came back clear.  A couple of weeks later I was sent to the ER on a Saturday because I had extremely bleeding (my doctor was afraid I had lost too much blood). The next week my gynecologist ordered a ultrasound and did a biopsy.  She wanted to cover all bases but thought it was my PCOS “acting up” and nothing to be concerned about.  It turned out to be cancer.  Helpful hint when your doctor calls and asks you to come in to go over test results, you should go in.  I asked for the results over the phone because I was at a conference and the next day I had a bunch of meetings planned I couldn’t (really didn’t want to) miss.  Bad idea. 

I was diagnosed 8 days before Thanksgiving and therefore I had to wait a couple of weeks to see a gynecologic oncologist.  He recommended doing hormone therapy to treat the cancer (Mirena IUD) instead of surgery.  Some of the reasons are because of my age, the fact that I would like children, or at least the option to have children one dad, and that the cancer was caught early. 

I then went into Dana Farber Cancer Center in Boston for a second option.  There I met with the head of the gynecologic oncology department.  He ordered a MRI as a “double check” that the cancer was not in the muscle of the uterus (it wasn’t) and then recommended the same treatment (Mirena IUD). 

I had it inserted 2 days before Christmas at the original oncologists office. 

In March I had a follow up and the tumor had shrunk, everything was going great.  In July I had my next checkup and the cancer had not grown but also had not shrunk at all.  The oncologist said it this was not normal but also not abnormal.  He wants to wait until my next appointment and then see what happens.  Some of the options we discussed depending on what the next test results are, are to keep going with the same treatment (if it has shrunk), adding another hormonal drug or other more “extreme” treatments.  I am assuming this would be surgery and possibly some type of chemo or radiation but we didn’t expressly discuss it. 

I am now waiting until October for my next round of tests and to see the oncologist again.  I am nervous and feeling uncertain about everything.  My current oncologist is retiring so I will meet the doctor who is taking over my case.  I have also been experiencing a slight increase in bleeding and an increase of the amount and severity of cramps (or pelvic pain as the oncologist calls it).   Both these make me nervous but at the moment it’s a waiting game. 

Through this entire experience I have been surprised how much of the process is about waiting and having to be patient.  I thought as soon as I got diagnosed I would be in to see an oncologist within a couple of days and treatment would start ASAP but it took a couple of weeks to just see someone and even longer to get in for my second opinion. 

I have days where I feel 100% fine and almost (but not quite) forget I have cancer and other days I am in so much pain I can barely more or am so tired I can’t keep my eyes open.  I know I am thus far lucky that I don’t have crazy side effects from either the treatment or the cancer.  Mostly what I am dealing with is bleeding on and off, pelvic pain and tiredness.  The tiredness usually happens after I have had pelvic pain/cramping. 

So that’s my story (so far).  I am sad (not quite the right word but will do) that I have joined your group but am happy to “meet” all of you. 

Kvdyson

Patience is a Virtue

Hi Agania, sorry to hear of your diagnosis. As you noted, patience is a virtue once you become a cancer patient. It sounds like you are having treatments at a a large cancer - which is good - and that you have taken care of getting a second opinion. At this juncture, it really is about keeping yourself occupied with things you love doing while the medical experts do their jobs and try to keep you as healthy as possible. Try to stay focused on the future. Make some fun plans. If additional treatments are necessary, you'll know that you're in the right frame of mind to decide accordingly. Good luck and keep us updated on how you're doing. Kim 

TeddyandBears_Mom

Welcome Agania,

Welcome Agania,

So glad you found us and sorry you had to.  I agree with everything Kim said.

I think your doctors are doing the best for you. Normally, grade 1 cancers are very slow growing so you have time on your side from that perspective.

Only you can determine if something more radical needs to be done when your pain gets to be too much. I hope it doesn't get to that for you.

Please come back and let us know how you are doing and ask us anything. Someone will most likely have an answer.

Love and Hugs,

Cindi

Nellasing

Hi Agania,

Yup, it's all about the waiting!!!  You aren't alone- it is SO HARD and there is a lot of it.  Glad you found our board the folks here are so kind and helpful- feel free to come keep us posted,  share whatever is on your mind. ask questions, vent- nothing is off limits and we are happy to be a safe place.   (((HUGS)))

NoTimeForCancer

Agania, I am so sorry you

Agania, I am so sorry you have found yourself having to deal with all this at such a young age.  Wrapping your head around all this at any age is difficult, but to be young and also wanting to have the options of children with this disease just adds to the anxiety.  You are with a great cancer center, Farber, and if you have concerns then I would recommend calling the office and telling them about the pain and bleeding - there is no need to wait to get those addresses.  

Waiting is the hardest part.  Like you, I thought it would all go much faster and when I met my gyn onc and he talked about surgery I said, "What are you doing tomorrow?" I would suggest to just take it all a day at a time right now.  

MAbound

Not a fan of watch-and-wait

Hi Agania, welcome to the forum, but I am so sorry that this is happening to you when you are just getting started with your life. Cancer is so unfair!

My PCP took a watch-and-wait approach with my late menopause and that didn't turn out so well for me so when I read: "I have also been experiencing a slight increase in bleeding and an increase of the amount and severity of cramps (or pelvic pain as the oncologist calls it)." I see a big red flag waving in my face and worry about you just carrying on with it while waiting for an appointment in October. 

Changes in bleeding and discomfort is the body's alert system for us to know something is going on that needs to be looked into before it gets worse. I'm guessing it's most likely an issue with the IUD itself rather than the cancer. It wouldn't hurt to have that checked out and you shouldn't have to wait in discomfort for a month or more for that to happen.

I have no experience with an IUD, so maybe this is something minor or to be expected when using one, but it may be better to err on the side of caution and at least talk with your doctor's nurse about it. She may be able to decide if you need to be seen earlier than your October appointment or not. When you call in, ask to speak with the nurse so that you don't end up explaining your issue to a receptionist.

Questions you would need to anticipate being asked would be things like:

When did you notice the change in the amount of bleeding? is it just during your period or in between?

How long does the increased bleeding last? Is it that your periods have gotten longer or is it happening between periods?

How much blood is it? That can be quantified by thinking about what kind of pad are you using, how often you have to change it and how that compares to what you normally do.

Are there any clots in the blood when it's not your period?

When do you notice the stronger cramping and when is it in relation to your period?

Is the increased cramping just when your period starts, constant (like all day every day) or intermitent (some days but not others)?

On a scale of 1 to 10 how much worse is it than what it was before?

Is it a twisting, stabbing, or achy throbbing pain?

My intent is not to alarm you about this since you said these changes are not dramatic. I'm just of the school of thought that it can be risky to not pay attention to the signals our bodies give us when something is brewing. There is no harm in alerting our caregivers to things when they change. 

Agania

Hello all,

Hello all,

 

Thank you so much for taking the time to respond to me.  I am sorry it has taken me so long to respond.  I thought I would get a notification when someone responded to my post but that did not happen.  

 

Your feedback and support are very much appreciated.  It can be awkward talking to people - even family and close friends - about how I am feeling and what symptoms I am experiencing.  Part of it (really most of it) is self inflicted.  I do not want to bother anyone even though, rationally, I know I wouldn't be.

 

I see my primary care doctor this week and will mention some of the symptoms I am experiencing and see if she recommends I call my oncologist.  I am trying to be better about noticing when things change or what triggers certain things.  I leave for vacation at the end of next and want to make sure I can enjoy it.