So I have debated with this for sometime about what I wanted to do, if I should blog about this particular "adventure" in my life or not. But the more I thought about it the more I came to realize it is highly unlikely I am alone and therefore my experience will hopefully someday help someone else.
This is where the disclaimer comes in. From here on out this becomes very personal. There may even be some mention of female body parts and reproductive organs so if that isn't for you please stop reading. For everyone else here goes...
For anyone that truly knows me knows that the love I have for children is profound. One of the immediate first questions/concerns I had when I found out I had cancer and would be undergoing chemotherapy was, "Will this affect my chances of being able to have children?" Aside from wanting to remain alive being my #1 concern/objective, I have to say children/fertility was #2 on my list from Day 1.
Because of the nature of my lymphoma there really wasn't time to waste before I needed to start treatment. There also weren't many option discussed as far as fertility preservation. So due to the time constrant my only option was to get a shot of a drug called Lupron. Lupron is a hormone therapy drug that causes the female body to stop making estrogen therefore stopping ovulation. The idea behind getting this before treatment is that it will help protect the ovaries from the harmful effects that chemotherapy can cause. In my case one shot lasts approximately 3-4 months and since my treatment only ended up being slightly more than 4 months I only got one shot.
So I completed my treatment and at my first 3 month check what do think was one of the first things out of my mouth? That's right I was asking when my periods should be returning. My oncologist told that it was very luckily to take up to about 6 months for anything to return to normal. Well I was giving him exactly 6 months. If things weren't progressing by my 6 month check up he was going to hear about it. Lucky for him my cycles returned two weeks before I was scheduled to go see him so I was thrilled about that!
Everything continued pretty much like clock work for another 4-5 months. I honestly could've set a calendar to it. However this is also the time that I started changing everything about my physical person. Changed my diet, changed my physical activity, etc. I had lost a significant amount of weight. After about the 5 month mark things start to go haywire. There were times were I would go for 2 months with no cycle or when I would get a period it would be for weeks (yes I said weeks as in 14-20 days). It got to the point where I told my primary care doctor that I wanted to go see an actual gynecologist. During this time I also became even more concerned about my fertility so I also convinced her to do hormone testing, which came back normal for someone my age, etc.
All this continued for quite sometime. There were times where I was put on progesterone to stop the bleeding it had been going on for so long. After talking to my GYN it was decided that I would start taking the pill in an effort to help regulate things. So I did.
While all of this was going on I made it a point to keep my oncologist in the loop and voice yet again all of my concerns with what was going on. A lot of it was attributed to the recent weight loss and not so much my treatment.
I stayed on the pill for about 6 months. When my prescription ended in March 2013 I decided I wanted to see what was going on and if this had helped at all. Well since March of 2013 I have not had a single period and no I assure I am not pregnant. This has obviously been quite concerning to me as this irregularity had now been going on for almost 2 years.
So when I went for my 2 1/2 year check up with my oncologist I explained what had been going on, after a very lengthy conversation he said, "Well intially when we started your treatment the likelyhood of RCHOP affecting your fertility was very slim. However having to change your treatment to R-CODOX-M/IVAC which is a more intense treatment could have possibly had some effect." At this point I had to control myself as this has been a topic of conversation since day 1 like I said earlier. We both decided it was in my best interest that I should go to the fertility clinic!! Finally I was hopefully going to get some answers and hopefully some good news!!
I was setup with Dr. Irene Souter who is the director of perimplantation genetic diagnostis program
with the fertility center. She was absolutely amazing!! Of course the first meeting was like pretty much any other medical meeting, lots of bloodwork and going over the plan. She explained that lots of times with cancer patients their oncologists see the return of periods to mean that fertility was unaffected. However you can have periods return and still have some affect to the ovaries and hormones. I was some what relived to know I wasn't crazy!! We did all the bloodwork before we left the office and the ultrasound was scheduled for a few days later.
In fact I had the pleasure of doing an olympic triathlon and then waking up at the crack of dawn to drive into boston on a busy Monday morning to have an ultrasound done. Let me tell you how excited I was about that! I luckily had a friend go with me which was nice support. During the ultrasounds they were amazing at explaining exactly what they saw and what it meant. Oh yea and I forgot to mention that this was an internal ultrasound, that was a fun first time experience. There were a few things to note, 1.) There was a simple cyst on my right ovary which are apparently quite common, usually come and go and are certainly not cancerous. 2.) My left ovary was very difficult to view so they made a note that it was smaller then it should have been. 3.) The lining of my uterus was still quite thin which meant that even though I hadn't had a period since March there didn't appear to be one coming in the near furture either. I left there feeling concerned about the cyst and the small left ovary.
Fast forward SIX WEEKS later (yes I did have to wait 6 weeks). I finally get to meet with Dr. Souter. The good news is that all of bloodtests including genetic testing and hormone testing came back good. The hormones were slightly off but nothing that can't be helped and I am certainly not in early menopause which was my biggest fear! However Dr. Souter did say the size of my left ovary was abnormal and that she believes based on the ultrasound and bloodwork that my chemotherapy treatment did have an affect on my ovaries. But that she also thinks with some fertility treatment I will still be able to have my own children! That was a huge relief for me!
Then she told me about what was next. I needed to have more bloodwork and what they call and HSG (hysterosalpingogram) which is basically a live x-ray of your uterus and ovaries where they inject some dye to watch the picture and make sure everything looks the way it should, there are no blockages and the fallopian tubes are working the way they are supposed to. This one scared me a little!
To prepare for this I had to go in the day before and get bloodwork done to make sure I wasn't pregnant. I also had to have another internal ultrasound. Luckily this showed that the simple cyst was gone, however my left ovary couldn't be seen. That night I had to take an antibiotic because the HSG is considered to be invasive and they use that to prevent any possible infections. While at home there were two things going through me head. First being, aside from my oncologist who has never seen any part of my body other than what isn't covered by clothing, I have never had a male doctor so I was hoping the Radiologist was not a man. and second I never thought I would be having the conversation with my husband about how the situation was down there. Did I need to shave or something of that nature.
Now on the day of the HSG I arrive in Radiology ready to do this. I get changed and then they take me down. They go over the procedure, how it will work and all the potential side effects. I sat there calm as could be as they told me they were going to be inserting a small catheter through the cervix into the uterus so the dye could be injected for the x-ray. All without any kind of pain medication, now doesn't that sound fun? So as if I wasn't nervous enough in comes the doctor who I am sure you guessed by now was a man. I was just about mortified. However I kept my cool and just told myself, "well it needs to happen and the likelihood of ever seeing this person again was slim so just deal with it." They have me lay on the table with my legs in the lovely knee stirrups 100% spread eagle for a long time. Finaly everything is ready to go and they start. They sterilize everything and insert the speculum. Then comes the fun part the catheter. He tells he is going to insert that and proceeds, surprisingly enough it wasn't as bad as I imagined slight discomfort but nothing over bearing. Then they have to slide you down the table to be the right position for the x-ray. Well while this was going on you will never guess what happened. The catheter came out. So I got to start the process all over again.
Same thing new sterile dressing, new catheter, everything. This time when he was done he had to hold my legs while they slid me down so I didn't engage any abdominal muscles which would make the catheter come out again. This slide was a success! They started the live x-ray and injecting the dye. That was more painful but I think it was due to the speed at which the dye was being injected. About 5 minutes in he left the room and came back with another doctor. Explaining the image he was seeing was a little unusual. That comment made me nervous. You also guessed correctly if you said this second doctor was also a man. They continued to inject to dye but by doing that caused some hardcore cramping/spamism and again the catheter came out.
So this is now the third time we are doing this. Now I get the pleasure of not only doing it again but with an entirely different male doctor poking and prodding down there, FANTASTIC! after I was all set up again and had been slid back down the table they again started taking pictures. He injected the dye much slower so there really was no pain/discomfort which was a relief. When all this was said and done he told me it appeared both my fallopian tubes were open and that there didn't seem to be any abnormalities. That was very good news and I suppose worth all the anguish I went through. A normal 15-30 minute event took me an hour and half! At least I got many praises of being an excellent patient during the whole thing!
That is where I am at right now in my adventure to find the fruitful lands. I decided to write about this in hopes it will some day help someone else who finds their fertility has been affected by chemo. I am currently waiting for my follow-up appointment to go over all the results and see what the next steps are. I assure that my later posts will not be this long. I welcome any comments, questions or just general support that anyone would like to share.
My one thing to leave you with is when faced with something that could affect your fertility or sexual healthy be your own advocate, ask questions and push for what you want! :)