The one thing about Dr. Cakmak that I think someone should know is that he can be a bit aggressive/stuck on his treatment plan. ... He does argue his points with me, but will give me the information and his opinion and will defer to my choices. ... We are in the middle of our second cycle and I would actually say I probably feel like more of a number now, oddly enough as I feel like we were sort of thrown into our second cycle with much less guidance and hand-holding.
Know that you will see whoever is on call for that day [UCSF], but it is your doctor who is going to be making the treatment plans and making the big decisions for you. ... about 5 days before the first monitoring appointment (when we'd have to pay), we got notice that to use our insurance, they were going to charge $32,000, and given that we had a lifetime max of $15,000 (and not taking into account we had already used some of that for the visits, ultrasounds, and meds), we would have to pay $17,000.
How was your experience with Hakan Cakmak at UCSF?
The one thing about Dr. Cakmak that I think someone should know is that he can be a bit aggressive/stuck on his treatment plan. I am undecided so far if this is a good or bad thing. I typically see whoever is on call when coming in for my monitoring visits. Last year, they found fluid in the ultrasound that appeared to be in my right fallopian tube. This would have canceled the plans to complete a fresh transfer. Dr. Cakmak was not convinced that it was in my tube. At the retrieval, there was fluid in my uterus, on the right side. All indications that there likely was fluid in my right tube. He left it up to me, but we had so few embryos, I didn't want to risk doing a transfer with a potential hydrosalpinx. He ordered another HSG, and the report stated that the left tube was "clearly patent" and the right was "likely patent". To me, this was not a clear answer that the tubes were clear, but to him it was. We are in our second round gearing up for another retrieval, and I noticed the fluid again. We just saw him today, and he is still not convinced that it is in the tube. When we were going through it last year, we were so emotionally invested in it all going "well" and were so hard hit by any deviation from the plan, that it was comforting when he wanted to barge ahead and not deviate from the plan. But looking back, it seemed that all of the other doctors we saw on call were more hesitant and cautious than he is. I trust him as a physician. I know he knows his stuff and I have seen his published research and studies. However, this "gung ho-ness" (can't think of a better word, feel free to edit that if necessary :) ) is the thing that has made me consider switching physicians. Simply because I am not sure this is the best fit for me. However, knowing this, I have made an effort to be more knowledgeable about options and vocal about my choices for my treatment plan. He does argue his points with me, but will give me the information and his opinion and will defer to my choices.
What's one piece of advice would you give a prospective patient of Hakan Cakmak at UCSF?
As discussed in the previous question: Do your research on your options, listen to his points and ask questions, but don't be afraid to advocate for your treatment choices. Be prepared for how rigid he can be in the treatment plan. As we learn when we start treatment, things change CONSTANTLY as there is no way of knowing what your body will do. Know your options, and be flexible, as in my experience, he is not as flexible.
During treatment, were you treated like a number or a human with Hakan Cakmak at UCSF?
Dr. Cakmak sat at our first appointment and stated that he had reviewed all of my medical records, and I had sent over quite a few releases so that they may have all the info needed. He then verbally reviewed all of my info to verify that he had a good understanding of everything. He then gave his recommendations and why he thought each step was the one we needed to take. It wasn't until our failed cycle that I understood that the first IVF is kind of a crap-shoot because they have no way of knowing until then what your issues are or what kind of cycle you really need. We are in the middle of our second cycle and I would actually say I probably feel like more of a number now, oddly enough as I feel like we were sort of thrown into our second cycle with much less guidance and hand-holding. However, it is hard to say if this is because it is my second time around or if it is because my nurse resigned prior to me starting my second round, so the nurse I have now is a nurse for another doctor on staff.
Describe the protocols Hakan Cakmak used in your cycles at UCSF and their degree of success.
1 IVF: Antagonist, planned to be a fresh transfer. Can't remember the dosing, but I was on birth control in the prep month (and estrace? can't recall), then menopur, gonal F during the cycle, cetrotide to suppress, and had planned on using an HCG/Lupron trigger, but my estrogen levels indicated that I should not do the Lupron trigger, so it was just HCG. High number of eggs retrieved and my estrogen levels put me at risk for OHSS, but luckily did not develop this. Due to potential hydrosalpinx and low number of embryos at day 5, I elected to change it to a freeze-all. Then FET with 1 embryo (only one left on day 6 that was also euploid).
2. (current cycle) Long agonist (doctor decision based on poor quality embryos at last cycle--25 retrieved, 18 mature, 16 ferilized, 8 embryos on day 3, 4 on day 5, 2 made it to blastocyst on day 6, one euploid, one anuploid). 10 units Lupron during prep month. 150 Gonal F, 150 Menopur (decreased to 75 on last day of stims), 25 units Omnitrope (human growth hormaone- to address egg quality thought to be the reason fro poor embryo quality). I will be triggering tonight with 5000 HCG. Planned to be a fresh transfer (day 3 if not at blastocyst criteria, day 5 if they do meet blastocyst criteria), but I will request they look for fluid in my uterus at the egg retrieval.
Describe your experience with your nurse at UCSF. (Assigned nurse: Audra during my first cycle, Maria during my second)
I was glad to have an assigned nurse at this clinic. My first nurse was attentive and responsive. She had joked that she was a "stalker nurse" and would be calling me all the time, but really this was helpful and appreciated. She was a bit clinical during my miscarriage (not at all insensitive though). My second nurse is on loan from another doctor in the practice as Audra left. The day I called to say I wanted to get started and report my day one of the cycle, was her last day. My second nurse, Maria, has also been out of the office for parts of my cycle. When I have called her directly and emailed her, she has always called back or emailed and has let me know when she would be out of the office. I appreciate that she works later hours as it was frustrating trying to make sure I called Audra before 3 or 3:30 as she typically left for the day then and inevitably something would come up a 3:45. Maria has been friendly and personable. I generally have had no issue getting in touch with anyone on the care team. However, there was a day during this cycle that I had significant cramping throughout the day on a day I did not have to go to the clinic for monitoring. I was concerned that I was developing an issue, possibly ovarian torsion as it was localized to one side. I called the care team line as I knew Maria was out of the office and never received a call back. This was unusual as this had not happened before and of course happened on the day I was concerned about a serious side effect of the treatments.
Describe your experience with UCSF.
I don't know if people can request certain doctors. I just called and was sent to the first available, I think, but it'd be worth it to ask and to check out all the doctors who have been reviewed to see who is a good fit for you. Know that you will see whoever is on call for that day, but it is your doctor who is going to be making the treatment plans and making the big decisions for you. I did not mind seeing other doctors. I felt like it gave me perspective about my own doctor. I was appreciative that my care was not passed off to a nurse practitioner like at other clinics. However, it may be important to others that you see your doctor at each visit, in which case another clinic may be a better fit. The billing department is a nightmare.
Describe the costs associated with your care under Hakan Cakmak at UCSF.
My visits were covered. Follow-ups are free if you are on the self-pay. We initially went to this clinic due to insurance coveraage. The only clinics that were "in-network" for my insurance were in San Francisco. So we billed insurance for office visits and my water ultrasound. However, once we got ready for the cycle, about 5 days before the first monitoring appointment (when we'd have to pay), we got notice that to use our insurance, they were going to charge $32,000, and given that we had a lifetime max of $15,000 (and not taking into account we had already used some of that for the visits, ultrasounds, and meds), we would have to pay $17,000. Or we could chose the self-pay option, bill none to our insurance and pay $16,000. Insurance was the whole reason we went to this clinic, and in the end, it was cheaper not to use it. Our second cycle, when I informed my nurse we only had $4,500 left and we'd be using it for meds, she said we should utilize the 340B medication program. What Freedom pharmacy had charged my insurance $6000+ only cost me $250 through this program. She stated that we could then use the $4500 left on my cycle. I knew this was likely not the case, but I figured we could save that money for something else since I didn't like that Freedom wasn't transparent in what they were charging my insurance, so ordering through them with a limited amount of funds left meant I didn't have any way of knowing what I would be charged in overage after the $4500 was gone. Our first monitoring appointment was on a Saturday, and the billing department sent me a letter of financial obligation on Friday at 3PM. Turns out, I was right and we can't partial-bill, so there's no way to use that $4500 toward a cycle. They were gracious and understanding and are letting us pay at a later date rather than at the first monitoring appointment. We are still looking at about $16000 for a fresh transfer cycle with monitoring and egg retrieval. $4000 for a FET. Plus medications.
Describe Hakan Cakmak's approach to eSET (elective single embryo transfer) vs. multiple embryo transfer at UCSF.
My doctor and the geneticist I met with at UCSF both really wanted me to implant one, but are allowing me to implant two. They educated me on the risks of implanting two and the risks of carrying twins.