I do travel - 1850 miles round trip. I fly about every other month - sometimes more, sometimes less - to Houston to be treated at MD Anderson. I have been doing that since 2008. I think it's worth it because I'm still here. I don't think I could have made a better decision.
If you really think there is a place you can get better treatment than your current facility, you owe it to yourself to at least check it out. Schedule a "second opinion" visit. Then decide if it's worth it to invest in moving your care plan there.
Luckily I live right near Duke. I started at UNC but they were letting me die. I would have died three months after surgery. Duke does cutting edge treatments and clinical trials. I am three years out. I had cancer in 14 places now I have it one and it is shrinking. This is a serious cancer and you need the best care you can get. I am now on a drug just approved by the FDA for BRCA patients. As soon as it was approved they got me on it. Duke cares about all of you. I was starving to death at UNC. The first thing Duke did was get a nutritionist on my case and give me fluids and blood. They would do none of that at UNC.
Also look where you are treated. At UNC it was in a hallway. Nurses and patients were so crammed in there you could touch the chair next to you. The nurses kicked your IV going patient to patient. Duke has a beautiful chemo facility with rooms where you and your guest could be private.
I think a second opinion is important. I was so freaked I just went with the first doctor. He turned out to be MIA the whole time I was there. He saw me the first appointment before surgery and never again. I had never had a doctor not see me before surgery or the six days I was in the hospital. He was in a rock band making a concert film about Ovarian Cancer.. I had a bad feeling about him but did not listen to my gut. The first visit he was all ego and no compassion. His game plan was to wait until I finished chemo to see me six months out. I had no other doctor. No one told me this. When you are told you have late stage cancer you do not want to be left hanging.
Ask how much involvement the doctor has. Ask to see the chemo area. Ask who you call if there is a problem. Some people like the doctor to just tell them what to do. I like a doctor to involve me in my decisions. My second doctor was paternalistic. He wanted you to do what he said with no argument. He called me crazy when I said no to a treatment he suggested. My new doctor gives me the facts and lets me decide. I like that better. If you find you just do not gel with a doctor you can change. I am not a doctor hopper but this is my life.
My new doctor sees me every time I go in. She follows my case closely. If I have an issues she gets right back to me.
I am not in Atlanta area but I would make some generalized suggestions based on my experience and hope it can be helpful. If you need a specialized gyn/onco surgeon, I would start asking your ob/gyn for a reference (that is if you have a good and trustable ob gyn, of course). They are in first-line for your gyn health and - if any good - she/he will do best with referral. Second, as I uderstand, there may be not many gyn/onco surgeons in your area even though it is a major metropolitan area. My ordeal with OC started last year in ER. The resident gyn/onco surgeon of the affiliated hospital suggested immediate total hysterectomy and omentectomy. My gut feeling told me to decline it but I asked if he can give me names of other good onco/gyn's. To his credit, he obliged saying "there are only 300 of us in the usa and we all know each other as we go to the same conferences etc". I was amazed to hear such a small number ( don't know if it true though) but he gave me 3 names in my area, I cross-checked them with my ob gyn and found the one whom I felt confident with. I am not sure though what you are looking for: gyn/onco for surgery, for postoperative follow up or for an oncologist for chemotherapy. The purpose should dictate the qualification criteria in screening, IMO. Good luck, Alla
Thank you, Alla... That is great advice... My OB has been somewhat dismissive, but still suspicious, and wants to watch and wait... I'm frustrated now by the pain and being unable to live my normal lifestyle- so I am pushing to get definitive answers now.
That is good advice... I know that MD Anderson is very good. I'm so glad it is going well for you :) How old were you when you were first diagnosed, if you don't mind my asking...
That sounds awful... your nutrition needs are so important. What goes into your body nutritionally supports it and your immune system- it really helps in keeping your strong and healthy as possible while enduring chemo... I can't believe they were treating you in a hallway, that is so demeaning. He was doing a rock concert? And he put that above his career seemingly focused on saving lives? He would def be off the list!
I feel your pain on the one talking down to you... That is exactly what is still happening here now. I called today and know they got my bloodwork and counts back- they said they had the wrong number on file so couldn't have called me, which is not even possible... She said she would have someone call me back to go over them with me, but never did... I'm just going to go in on Monday and get the results and copies of anything else... Then back to my gyn and have her do the next ultrasound now, for comparison- because I shouldn't be in so much pain... Then, I have an appt scheduled for the 13th w/ a local oncologist... I am going to have them run every test under the sun before then...
How do I push for the CT scan of my pelvis/abdomen, would it show a clearer picture? Isn't the colonoscopy recommended?
Thank you again... so much!
I just came across your other post where you described your symptoms, sorry I haven't read it before. I have to tell you that your gyn does not sound good for solving your problems (nor professional neither compassionate). Not addressing such level of pain? Forgetting to follow up with blood test? You mentioned that you have a Dr friend who helped you with blood test. I would use her as a resource for good obgyn reference first. From my experience (and I am almost twice your age), they all know each other and it is particularly difficult to find a good obgyn. I went through many ob gyn's while being healthy, for annual checkups until found one by trial and error. Criteria: pay close attention how they perform pelvic exam. You should feel his fingers going thorough and firmly through every inch of your belly. No rash with exam. I dismissed many gyn's just from the way how they do it. Also: how they listen to your complains, what questions they ask if no complains and if they rush out the door.
About your symptoms: I am not an expert but I would suspect you have much higher likelihood of having inflammation origin rather than cancer origin. Inflammations in pelvic can be quite painful I heard. My friend had a cyst that got twisted, with terrible pain. In opposite, most gyn cancers are silent until very late stage. I do not know about other cancer types but ovarian hits mostly post-menopausal women. It is very low chance that you develop such an advanced cancer in such young age. At your age, I would be cautious with gyn/onco's ( not suggestingyou should not seek them) as they may err on side of unnecessary organ removal as others in this forum experienced. Even elevated ca125 and presence of pelvic mass may not be prognostical in your case, there are case reports in literature about that. Sorry for long post. I understand your state of shock from being in perfect health to such extreme pain. I was in the same situation only having advantage of being much older. Imagine wat it is at 35! I wish you well, I am sure you will overcome this.
I agree... Neither she nor my primary asked me any questions and rushed me out the door- she didn't even weigh me. I insisted she check me for any inflammatory issues like infections bacterial and viral- even yeast.. She said there was nothing... She checked for a hernia, that wasn't it either... But with my pelvis inflamed and aching and the pain and swelling in my abdomen on the right, there must be something... I am going to go back tomorrow and have her do another ultrasound to compare my right ovary from the first one. I really think they need to do a scan of my entire pelvis area, check my colon, and my appendix. I should not be having any stomach pain with my diet- and the pain is only in my lower abdomen, concentrated on the right side. I know you can sometimes have a chronic appendicitis... it's really the only other thing I can think of that would cause such similar symptoms... Thank you for all of your experience and advice...
Hi Nat, you have pain on lower right side. Have they explicitly ruled out appendicitis? I browsed using "appendicitis diagnosis" , they make it too unspecific. Many years ago, before ct-scans, they did a simple "obdurator sign" test which correlated well with acute appendicitis. Google it, there is even video on YouTube. No mention of it now in "standard appendicitis tests". It is well known that MD's in the US are not good diagnosticians. They rely heavily on imaging and sample tests and do not develop analytical skills to resolve complex cases from nonspecific syndroms. In your situation, I would seek second opinion and look for an old age physician, the "old style" physicians may be better at it. Also, try to appear cold and collected when talking to MD. When they see an emotional woman, they may dismiss real symptoms as "woman imagination/nerves/stress etc". My colleague died of heart attack at 45 ! For two weeks they were telling her she just had "upset stomack".
Test for site.. Not updating
I was thinking the same thing... When I was in for my last appointment I saw my gyn and a general surgeon. I had been in pain and nauseas the night before- so I thought maybe chronic appendicitis for that type of pain and elevated WBC... They ultrasounded and checked everything again and determined my cysts hap ruptured and that they had been fluid filled, so it couldn't be ovarian... They asked a lot do questions about my diet and don't think it is my appendix though, that my eating seeds would aggravate it. They kept examining my and figured out the pain/inflammation is actually coming from my right pelvic/hip/tail bone (I thought it was all tender as a side affect). With finding that.... They want me to do a CT scan of my abdomen, to check pelvic area and any possible affected organs. See a GI to look for any possible digestive issues (for the weight loss). And see an orthopedic to check out the pelvic bone... Then determine from there if I should do a PET scan to look for any possible hot spots. The concern has shifted to possible chronic leukemia or a bone cancer (bone cancer is the one that runs in my family :/)
If you have noticed that seeds (and/or nuts) cause or increase pelvic pain, that could be a symptom of diverticulitis.
Another thought - Do you possibly have endometriosis? That can only be definitively diagnosed via surgery.
Hi, congrats with having them finally getting serious about your symptoms and ordering serious (much more powerful than Ultrascan) imaging methods. That should help in sorting out things. Ouch for bone cancer suspicion but that is only that - a hypothesis at this point. You shouldn't "distress yourself with dark imaginings", as a poet said. Given that hypothesis, However, I would research the web to find out - if there are bio markers established for bone cancers and what is the genetic research advancement on this - are there genes and their mutations identified by science and if those tests can be done ( at least for someone with hereditary pattern). Just to be in the knowledge and a step ahead. Just in case if a visit to an oncologyst is suggested at some point. Wish you good luck, Alla
Thank you for your thoughts into my situation :)
I don't have any issues with nuts or seeds... In fact, I eat them almost everyday. I'm a chef and focus on nutritional healing and special needs diets- I have worked with diverticulitis but never one for appendicitis. I didn't know they were so similar!
She mentioned that there could be some endometriosis-but that would require a scope to diagnos? Also, that I had a 'pattern' on my ovaries for polycistic ovaries (looked like a pearl necklace?) and that she thought she saw a small fibroid. But she didn't think it was necessary to do the scope test right away... I've had every blood test available... My thyroid and hormone panels all came back good. So, I'm a little confused about the polycistic ovaries...
Now that the cysts have ruptured, it's definitely obvious mine is bone pain. I feel like it's stemming from my joint and radiating. I noticed a hard bony lump on my right tailbone a couple of days ago, I'm not sure if it's related or not yet... I'm seeing the orthopedic Thursday- I don't think I have ever looked so forward to an doctors office visit!!
Ha! Thank you :) I felt very lucky to have seen a different doctor that day (along with general surgeon) that really took time with me to start figuring things out. I'm scheduled to see the orthopedic (and hopefully GI) on Thursday- really hoping to get some answers!! I decided to wait on the CT scan until after that... It seems they can see a lot of bones growths and cancer just from a X-ray, so I thought I would try that first to avoid the extra radiation just in case I need more scans later. Trying to be patient and calm :) I don't want to make any panicked fast decisions that may impact my health later... I hope you are doing well and feeling fantastic :)
Glad to hear you are making progress. You seem also to have started getting things under control, good for you. You are certainly right to limit unnecessary x-Rays, the orthopedics will certainly order one for you whatever he would deem the best. Cheers, Alla