Feeling alone

Hi everyone,

I have been so skeptical about posting on here. Last night I finally got the courage and wrote out everything I felt and somehow deleted it accidentally. I decided to give it another try.

I want to apologize in advance for the rambling.

I want to first say I've always had an irregular menstrual cycle, the doctor always prescribed birth control to regulate the cycle. This went on for years, the doctor said it was normal and though it would be fibroids. She said it was not to worry about it. I don't remember when my last smear was it could be anywhere between 8-4 years,  I know I should have been more cautious. I was just tired of always being told the same thing and getting prescribed the pill. I always felt that when I was ready to have children it was going to be difficult for me because of my irregular menstrual so as soon as my cycle would regulate I would always stop taking the pill.  About 4 years ago i remember going to the doctor because is was going through very heavy bleeding. It was bad, I had to change pads every hour or so, had clots almost the size of my palm and basically stopped my whole life because I had to stay near a restroom until it was over. Well, again I was prescribed birth control, this time along with iron pills because my blood count was so low. It helped. She also said she will put in a request for an ultra sound to check the source, I was told I would receive the appointment in the mail, I never did and I forgot about it.

I turned 29 at the end of May this year, and a couple of weeks later those symptoms I experienced years before came back. On June 9th I went to my new doctor and am so thankful for her. I told her what was going on and I told her I was done with birth control, I know something is wrong with me and I want to fix it not just be given birth control and it be forgotten. I told her I would be thinking about children within the next year and wanted to be ready. She completely understood and said she would schedule an emergency DNC to clean out my uterus, she said she though it was menorrhagia so she would have to put me on the pill for 2 weeks just long enough to stop the bleeding until the DNC. I agreed. Right before I walked out she said she wanted to check my blood count, I was sent to the emergency room right after. 

Once in the emergency room I had an ultra sound done to see what was causing the bleeding, right at the end is where they found that little smudge. Once the ER doctor saw the results he said he wanted to take a look, it took a while for him to find it but when he did he said he would be taking a biopsy just as a precaution. I was given two units of blood because the bleeding had made me extremely anemic, and was dismissed the next day. On June 12th I was called right before 2 pm, I was home at doctors request, everyone else was out going about their work day. I remember him saying to me "we found a little cancer in the biopsy. i know its hard to hear but you're going to be fine. They'll have to remove your uterus so you wont be able to have any kids but youll be fine. You will need to find a gynocologic oncologist, its not urgent but do take care of it within the next week or so." That was it, in a two minute phone call I felt my earth shatter. I think i was in shock for a couple of minutes but as soon as i came to I could do nothing else but sob. After phone calls to my boyfriend, brother and my mother my family met in my parents living room that night. I remember my father, who never cries, crying. My mother being as strong as she could be, I thought she was so good until the next morning when I realized it was 9am and she was still in bed, when I checked on her all I could see is puffy eyes and a tired face, my poor mother had been crying all night. I remember my two older brothers and boyfriend just being quiet, every so often saying everything will be ok. And finally my little sister, she lost it, she cried with me the whole time.

It was the weekend so nothing could be done until Monday, needless to say, it wasnt a very good weekend. I have a very huge family and by Sunday they all knew. I thank god for my cousin who immediately took over the process of looking for a specialist. She had become a first time mom a couple of months before and was exhausted but tried her hardest, I appreciate her even more for that.

Well let me just say that healthcare in the US is a joke. It started Monday June 15th when I called my Dr for an appointment so that I can be referred to a specialist. I saw her on the 17th, however my insurance did not approve a referral until days later. When I finally got in contact with the specialist their first appointment available would be July 1st. My cousin and I had decided to switch insurance for better coverage and that change would go into effect on July 1st which meant my insurance no longer covered the specialist assigned. Thankfully July 1st came around and I was able to see my new doctor that same day, he referred me to the specialist me and my cousin had decided on and all I was waiting for was an approval, the doctor said I should have it by monday because Friday would be a holiday. Monday came around and when I called the doctors office I discovered that my referral was nver sent due to confussion with my insurance. For the next 2 weeks I would go back and forth with these people who kept sending me to the wrong type of specialist. I finally gave up and begged my insurance to cut the middle man out and just deal with me, they agreed once they heard what i was going through. I was finally given an appointment to see a specialist on July 21st, although it was not the specialist me and my cousin wanted I was just thankful to see somebody.

Dealing with the insurance was horrible but I remember about a week after my initial disgnosis I had the most amazing dream. I dreamt I was at a specialist office and he said I was 5 weeks pregnant and treatment could be postponed until after birth. I let this dream fool me into thinking everything would be alright. So although my experience for weeks was horrible this dream allowed me to stay calm. I felt it wasnt the end.

This all changed July 21st. I went into the specialist office and he explained to me what was found, a 3cm tumor in my cervix, and what options I had. He said i had 3 options, a radical hysterectomy, chemo/radiation, and radical trachelectomy. He explained that if I wanted to carry a child the radical trachelectomy would be my only choice but he said this would be the riskiest option. He told me that cancer can return fast and stronger with this procedure and it usually does not end well if that happens. He then said these options are only possible if the cancer had not spread. This broke me, I knew spread was a possiblity but hearing him say it made it real. He then made a referral for a PET scan and said he'll see me back in his office in a couple of weeks to discuss my results and my decision on treatment. I go back August 13th.

I have a PET scan scheduled for July 31st and I am terrified. I havent stopped crying since I met the specialist. I cry myself to sleep at night and most days hideout throughout the day and just let go. I have so much support from family and friends and for some reason I feel so alone. I try and carry on with my day as usual as possible, even tried going back to work but I couldn't even complete a full day. The bleeding is still pretty unpredicted so this is a problem too, it depresses me. I feel its not fair to put my family through this. I hate that I feel like my relationship with the person I thought I would spend the rest of my life with is over, How can I ask him to give up the one thing we always wanted, a family. My boyfriend is the most amazing guy ever, we've known each other since we were in our very early teen years and were best friends for years before we realized everyone else we dated was pretty much a waste of time because at the end of the day we were all we needed and wanted. How can I ask this man to give up on a fimly simply because I cant give it to him, I cant and I wont. I fear the worst. I fear this has spread over my whole body and I will never get the chance to do things I thought I would eventually do. I feel i'll never get to visit places I wanted to visit.  I'll never get to give my parents grandchildren and will never get to see my future nieces and nephews grow up. Both my brothers are engaged and i fear I wont be able to see them marry.

The truth is I don't know much about what was found in me. All I know is a 3cm cancerous tumor was found in my cervix on June 9th and that I am terrified. I think it's the not knowing that is driving me crazy and the waiting is just making everything harder. There are days that I can look in the mirror and say to myself that this isnt going to end me that I am going to fight this. I remember the drive home from seeing the specialist when my mom said to me with tears in her eyes that she doesnt want to lose me to cancer and i try to promise myself that I wont let it, for me and for her. But still i cry myslef to sleep and cant help but think the worst.

Again I want to apologize for the rambling, I do apologize. I just needed to get this off my chest to feel better if only for a couple of minutes.

I hope everyone is doing good and again I apologize for the rambling.

god bless u dear

This brought many a tear to my eye. You and your family sound like incredible people and I just want you to know you're in my thoughts. I'm so sorry that you've had such a difficult time for so long but finally you're being listened to and now you can get on and get this thing sorted! I'm devastated for you about the children thing, but you're not asking your boyfriend to give up on a family! Unfortunately you've been dealt a really crappy hand but there are other ways that you and your boyfriend can start a family together, so don't lose sight of that. I know it's not fair and I wish you all the best with the next bit. I'm so sorry that you're going through this. Chin up and you're not alone, we may all be strangers on here but we're also one big family. Keep in touch xxxx

Hi, 

i am so so sorry you are having such a dreadful time. We may often moan about the NHS in the UK but we are very lucky to have it. It's no wonder you and your family are so upset, you shouldn't need to battle just to see a doctor xxx

you are right as well, the waiting part is absolutely the worst bit. Once you know what you are dealing with and you have a treatment plan, most people feel much better.

After your PET scan you will be given a stage which will dictate what treatment you need.  if it is a 3cm tumour and it is shown to be confined to the cervix then i think this would be classed as 1b1 which is considered early stage cervical cancer and is extremely treatable. (Please correct me if I'm wrong ladies).

 

I was stage 1B1 and had a trachelectomy 6 months ago.  

In in terms of recurrence rates with trachelectomies, my Doctor told me that recurrence rates are pretty much the same as with a hysterectomy. I also read lots of studies which backed this up.  They are extremely careful about who they give a trachelectomy too and you have to fit lots of criteria, so this is why the recurrence rates are similar. my understandimg is that they only do it if they feel it will be curative.  Plus, during the trachelectomy op, they check your lymph nodes and if there is any sign of invasion or concern they revert to a hysterectomy anyway. This is what happens in the UK anyway. I guess what I'm saying is to make sure  that you question everything. It is your body and your fertility. And remember not many doctors are specialised in trachelectomies (even in the UK) so the info givn about them can be based on someone's opinion rather than facts, studies, and experience of carrying out the procedure.

 

having said that the most important thing is your health and getting you better. Whatever the results of the PET scan it sounds like you have an amazing support network. Please remember this is a very treatable cancer and there are many women on this site of all stages who are clear many years later. I'm sure lots of them will be along soon to reassure you. Be kind to yourself while you are waiting for results...... And any questions ask on here. It's a wonderful forum and I don't know whAt I would have done without it.

 

Nellie 

Hi

firstly I am so sorry for what you have and are going through.  Like others have said we moan about the nhs and the waiting but your experience sounds truely awful esp because the waiting is the hardest bit.

i wish I had magic words to help but I know what u mean about feeling lonely as others can be there but ultimately it is you going through this.  I have been going to events and seminars at my local cancer centre which I have found massively helpful as meeting other ladies going through this is really usefull and heart warming. Plus I have found this site super helpful.

the fertility thing is so hard, I never realised how much I wanted kids until I realised I won't ever have (I'm later stage so there are no options).  It is the worst bit ur going through because you don't know what you are facing and what your treatment options are.  If you can access the McMillan website from the U.S. It's helpful and you could research your treatment options without scaring yourself with google.

I found writing down questions really helpful also explain how important fertility is to you and ask them to detail the options and why some are not possible.  They will know more after the pet scan and hopefully you will get more info.  It's prob not helpful, but because of my treatment I got asked if I wanted to harvest my eggs however this wasn't an option for me, u seem less advanced than me so that could always be an option.

i start my treatment next Tuesday and remember how agonising the waiting period is.  It will get better once you know exactly what your facing, what options you have and being able to make an informed choice.

i really hope things improve for you, please give me a shout if u want a chat rant or anything.

 

my thoughts are with you

 

Kimmy 

Hello sweetheart :-)

(((((HUG)))))

Your boyfriend sounds like an amazing guy and I'm sure he'll stay by you. Your family also sound pretty amazing and they will definitely stick around. It's probably easy for me to say that not having a family of your own isn't the worst thing in the world. Being an aunt is great fun as well.

But it's too early to give up on motherhood and it's too early to give up on life. You're going to fight this and you're going to win! Best wishes for Friday!

Be lucky :-)
Tivoli
xxxxx

Thank you everyone for your kind words. I do have an amazing family that supports me through everything but it's not the same as speaking with females going through the same thing. I just finished the PET and although I managed to calm down the last couple of days I feel today statted the emotional roller coaster again. When I was done the tech administering the test gave me a look, I dont know if it's in my head or not but it worried me. Now the wait continues until August 13 when I get to go see the specialist. I don't know how I'm going to do this. I just want to know what the results are already and start treatment as soon as possible. 

I hope everyone is doing good. Thank you all for listening. Sorry for being  so emotional. 

Hi there. Glad you've been seen so quickly for the scan.

i honestly wouldn't worry about a 'look' the tech gave you. it is perfectly natural to read into every word and expression. I did EXACTLy the same after my MRI. I was convinced they looked 'somber' and when they asked me 'if I had an appointment to get my results already' I convinced myself this was because I urgently needed to have my appointment because the results were bad. The results showed no spread and no surprises in the end. Just shows how much your mind reads into things! the people who run these tests do them day in day out and are not allowed or qualified to tell you anything about the scan. 

Please try try not to worry, I know it's easier said than done. It will get better when you have a treatment plan.

 

hugs xxx

I just wanted to send hugs and so much support. x 

Please don't apologise for being emotional, it's what makes us human :-)

(((((HUG)))))

Be lucky :-)
Tivoli

Thank you once again for your kind words. 

I was doing so good. Then Saturday night I had a little bit of a melt down due to symptoms caused by me not eating right, I talked it out with my boyfriend, brother and sister in law, it helped. I was good for days until today, I had a break down again. But I think it's my own fault. I stopped taking my iron pills because I was getting very bad constipation, today I began to take them again and I guess I forgot how hard it is on my stomach because I tried eating an apple about an hour after and not even half way through it came right back up. Sorry tmi. Also, I've had this soreness in my neck that originally started in my shoulder, it doesn't help that I sleep on that arm all night, but it scares me. I have had this pain before I was even diagnosed but now that I know what my body is fighting every type of pain I can think of I somehow associate with this. 

I had a good cry and feel a whole lot better now. I'm even going to give food another try shortly.

Only 8 more days until I see the specialist and check my PET/CT results and hopefully these last 2 months of waiting haven't caused any spread. I wonder how fast this spreads. 

I have been having a real big debate with myself lately though. The last time I saw the specialist I came out of his office convinced that I would go for the radical hysterectomy, I guess the way he talked about a radical trachelectomy scared me. I have been really researching this and I think I am leaning more towards this option now, I feel he exaggerated the possible outcome. I just keep thinking that if he spoke so poorly about this procedure then maybe he's not the right doctor to perform it.

I also have endometriosis so I was wondering if anyone knew if it will be for me to be able to conceive if I decide to not have my uterus removed. I know the trachelectomy will add difficulty but this plus endometriosis, I wonder if it's even possible to conceive and carry a child.

One thing the specialist did bring up a lot is keeping my ovaries as safe as possible. My family is full of amazing women that have volunteered to carry my child for me when I am ready, so the not having a family is not worrying me as much as it did before. It's just the me carrying my own child that I really want. I know my boyfriend will be a little disappointed if I go with the trachelectomy because the specialist scared him too. He says he just wants me to be the safest possible, and if removing my uterus is the only way then that's what he thinks I should do, but he's so supportive I know he'll be scared but eventually he'll understand how much this means to me. I just don't want to bring this up unless I know that endometriosis will not add to the conceiving factor.  I tried to look up information on this but I've been trying to stay away from google so there's not much out there.

Sorry, I ramble too much. I hope everyone is doing well and thank you all so much for your words. You have no idea how much they help. 

WOW! :-) You have the best people around you :-) Here's another hug :-)
(((((HUG)))))

Be lucky :-)
Tivoli
xxxxx