A question for ladies in remission

I always see the Dr.
atleast where I am. I have never seen anyone else. I am glad to hear you are in remission and if you have doubts..get second opinion,,you know your body better than any doctor or nurse..val

dreamer007 said:

Karen,

I feel the same way...when we are in treatment, its like being a member of a Royal
Family, then we become almost invisible...
I get a ca125 every month, and doctor appt. every 3 months... the first visit to onc doc's
office after "official remission", one of his residents saw me, but she consulted with him
My onc doc is also an asst. professor, so he trains the young doctors...it didnt bother
me, except the freakin pap smear hurt like hell...i thought it was bad technique, but
some say it hurts more because of having cancer, and "no hormones"

My onc doc RN keeps up with me by email, and is the best!!!
its so nice to have someone listen, understand, show empathy, and friendly, too
With my ca125 being 170, onc doc considers that a recurrence, and does not feel
need to do PET, or any scanning at this time... I am supposed to take armidex everyday,
and within a month, be evaluated... if the level goes up, i am sure more chemo recommended
The arimidex sux for me, but i am doing what they asked of me...

Today is the first time I have said "why me", but i am not going to let that make me
pity myself...im just going to get positive, meditate, pray and all those good things...
I am a stage 2C, so i thought i would be in remission longer than a year... sometimes,
i do not understand how some with later staged ovca are in remission for years...or that
a stage 4 person is doing well... my sister was diagnosed in 1996 with stage 4 ovca,
and died within two years....
i keep up with reading, internet, and places like this website to be informed and to
reach out to others...i am such a free spirit, its hard for me to deal with others...people
think you are weird, if they cannot "figure" you out...

The first time i saw my primary doc, after chemo was over, she would not even look me
in the eye, she was not her usual cool, nice self, and acted like she wanted to get me
out of there... she never acted like that before... i have not seen her since because i
dont really have a need to... just once a year for refills on my meds, if nothing else is
wrong

The next time i see her, i have to address this concern, and see if she feels guilty in
any way for sort of overlooking my complaint... my left quad and groin area were hurting
a lot more than usual, and i had told her that... about a month later, went to ER and got
the diagnosis... i want her to know that i do not blame her for missing some signs of
ovca... she knows my sister died from it... i have arthritis and diverticulosis, so i think
she figured that is what my problems were, and the fact that i am in my 50s in menopause...
looking back, i do wish she had said: make sure you call us, if you think something is
just not right... hopefully, we can work thru this, and not feel awkward on future visits

I am just glad to have found discussion boards, chat rooms, and others going thru
cancer... looking up stats and facts is not enuf...my offline support is kind of spotty,
now that i am not in treatment... i think most do not want to bother, or upset us,
maybe dont know what to say...plus, they have work, kids, things to do, life to live

ok, enough blathering from me!

dreamer

I can identify with all of
I can identify with all of you, in one way or another. Yesterday, I went with my husband for his check-up (his idea, not mine) and while we were there, the doctor (we use the same primary and it was he who diagnosed my OC), asked how I was. I said I was good. He asked, "Are they still keeping that Ovarian Cancer under control?" Very upbeat. I made some very vague reply, because I have never forgiven this man for the way he told me the results of my sonogram, which I thought was to confirm a bad gall bladder. He called me from his cell phone, on his way out of town, and said, "It's not your gall bladder. It's pretty much certain that you have Ovarian Cancer. There is only about a 30 percent survival rate, after five years. I want you to call the office and have the girls set you up an appointment with Mark Messing." We have since talked about that conversation, and he remembers it differently, too. But that's what he said. I did not pull those statistics out of the air, though I did Google them after I recovered from the shock. He thinks he was "more sensitive." Trust me, he wasn't. Recently, I called his office and got a recording. It said he was out of the office until such and such date, but "the girls" (I hate that he uses that expression) would be available for prescription refills, etc. Then he said, "If you have a true medical emergency, call me on my cell phone," (and he recited the number), "but it better be a TRUE emergency because I am going to Chicago to see my son." I have not changed doctors because my husband is devoted to this guy, and he will call in scripts for you, almost anytime you ask.

I have been in remission for 18 or 20 months now, and I see ghosts all the time. I think every headache is mets to the brain; every pain is a recurrence. I hate that I am the way I am, but it's pretty late in the day to change. My gyn/onc wants me to come in for an exam and CA125 every 3 months. We negotiated it down to every 60 days. Come Spring, if nothing has shown up, he is going to want to bump it up to every six months and I will be so not onboard with that. I get a CT scan every 3 months because of the clinical trial I'm in (different doctor), and will for the next 15 or 16 months (if I don't have a recurrence).

If you're thinking "bloating", as in ascites, rest assured that if it's ascites, it gets worse very quickly. If it's a stable kind of thing, it's not ascites. If the pants you wore last week still fit (or at least aren't too small by 2 or 3 inches in the waist), then it's not ascites.

Dr Sabbatini, who is the research physcian at MSKCC doing my clinical trial, told me that in all the years he was in general practice, he never diagnosed a single case of OC and it haunts him, to think back to some of the symptoms that some of his patients presented with, and that he might have missed it. Your doctor might be feeling some of that, too, Dreamer.

Cancer has changed my life forever. I never used to be sick. I refused to be sick. I was never prone to complaining and now, I feel like a hypocondriac. Because I'm scared, of course. I'm terrified of a recurrence, terrified of going down that road that, ultimately, does not look like it's likely to have a happy ending. And I really resent that the disease is able to ruin what might be the best of what's left of my life.

Carlene

froggy1 said:

Right with you, Karen
I am much in the same place. I have been battling this disease going on four years and am just coming out of my first recurrence, during which they managed to get me a remission(7 chemos and then a month of radiation with more chemo for a straggling para-aortic lymph node)
Anyhow, shortly after I finished treatment I started having excrutiating joint pain. On my last visit, I mentioned it to my oncologist and he just shrugged it off and said go see your PCP, sounds like arthritis. (Kind of like, "I got rid of the cancer, go away.!")
My PCP doesn't even mention my cancer when I go in! The first time after debulking, he said "Wow, you lost weight and your blood pressure is down." Duh, and I am dying, too!
He is totally incapable of working with my oncologist and doesn't have a clue about cancer/chemo related symptoms.
I called my oncology nurse..she feels I have neuropathy, told my PCP that and he said he would do nothing unless I went and got a nerve conduction test(no neurontin or meds)
Well, I had that today and I have very mild neuropathy, nothing that would cause my severe joint pain.(So the onc nurse was wrong) The neurologist recommended all the arthritis labs be done, which my PCP ignored. The neuro also said he was very unfamiliar with chemo-induced neuropathy and this is the neuro group recommended by the oncology practice! Arghhh!!!!
I, myself, made an appointment with a rheumatologist, but can't get in for a month. I also am trying to see an orthopaedic doc, in the hope they can help me.....
I DO NOT FEEL CARED FOR!!! I also am paranoid about bone cancer, as one of my chemo buddies got that as a secondary cancer.....
I also can't get "good" pain meds without going to a pain management clinic, as I live in a state of pill mills and the docs are all running scared.
To sum it up. These Doctors need to have coffee together. I feel as if I am my own PCP!
I do see on the boards some great PCPs and oncs, who seem to do it right. I just don't have them. Dr. Oz doesn't live here! LOL
Good luck to you... Ginny

About bone mets
Dear Ginny

If you can get someone to do a simple blood chemistry panel (usually includes glucose, sodium, potassium, calcium, creatinine, BUN, alk phos, & liver enzymes such as AST & ALT). If you have mets to your bones, both the calcium & alk phos will be high. Hopefully not.

carolenk said:

About bone mets
Dear Ginny

If you can get someone to do a simple blood chemistry panel (usually includes glucose, sodium, potassium, calcium, creatinine, BUN, alk phos, & liver enzymes such as AST & ALT). If you have mets to your bones, both the calcium & alk phos will be high. Hopefully not.

Calcium and alk phos
I know my alk phos is almost always high, not as high as it was during chemo, but high, because I am losing bone density. I also tended to have higher than normal Ca in my blood, because I was taking a calcium supplement, to help my bone loss. Yet, I'm not showing any indication that there is mets to my bones. Just don't want Ginny to freak out if her tests come back high.

Dear Karen
I can relate to what you're saying. You were lucky with the treatment you received from your medical oncologist. The med oncologist I see now only sees me for less than 10 minutes. Where I go, they want you to talk to an RN first or a resident and tell them how you feel, side effects, etc. Then they in turn talk to the doctor for you. I find this totally frustrating, as I don't need for someone else to talk to the dr. for me. Then, I find I have to repeat again to the dr. because he's the one I want to talk to. I don't really get much satisfaction, so I have found that when I see my primary care doc once a week, he listens, is very understanding of what I'm going thru and prescribes the necessary meds to help me with any side effects I may be having that are chemo related.

Over the past 7 years, I
Over the past 7 years, I have always beeen seen by my oncologist while doing treatment, but was downgraded to a nurse practioner afterward. It never bothered me though, as I figured since I was in remission, the other ladies needed his services more. I was actually comforted to see the nurse practitioner come through the door, as opposed to the doctor, as I knew if he showed up, we had a problem!!!!!

carolenk said:

About bone mets
Dear Ginny

If you can get someone to do a simple blood chemistry panel (usually includes glucose, sodium, potassium, calcium, creatinine, BUN, alk phos, & liver enzymes such as AST & ALT). If you have mets to your bones, both the calcium & alk phos will be high. Hopefully not.

Thanks
Thanks for the info. 'Will tuck it in my back pocket...

Karen I know the feeling well
I feel like I am hanging out here suspended and no one is watching me. My friends and family seem to feel that I am fine now and my Dr.s appt. is every three months. I will have a cat scan done 1 time a year. I do feel good right now and I am doing ok. People always ask me so your cancer is gone right. I can only answer them as far as I know it is for now. I guess I feel that no one is watching over me close anymore and it is scary. Sorry to ramble.
Sharon

Susan53 said:

Karen I know the feeling well
I feel like I am hanging out here suspended and no one is watching me. My friends and family seem to feel that I am fine now and my Dr.s appt. is every three months. I will have a cat scan done 1 time a year. I do feel good right now and I am doing ok. People always ask me so your cancer is gone right. I can only answer them as far as I know it is for now. I guess I feel that no one is watching over me close anymore and it is scary. Sorry to ramble.
Sharon

I know how this feels.
I know how this feels. Sometimes I think it is hard for the family and friends that do not feel comfortable with the cancer thing. My mother in law visited a couple of weeks ago from out of town, and she just kept going on and on about how wonderful I looked and how great I was doing, even as I was having dry heaves on the couch! "You just look so pretty!" she kept saying....huh? I am hairless, bloated, and I dress in the loosest fitting things I can find....Pretty? I have to laugh. It's hard though because I know how uncomfortable she was being at our home. I also get the question "after this your cancer will be gone?"...or "you'll be fine in no time"....etc. I think they just don't know what else to say or they just can't find the words.

I also know what you mean about "no one is watching over me close anymore". After I finished my first treatment regimen and was considered in remission, I felt like "now what?" I went from constant appointments and support to days of just me and the quiet...the waiting. Where did everybody go? I recurred in less than 3 months, and started again with all the "royal treatment". I have to admit, it was kind of a relief when I was able to see everyone again....ask my questions, get the attention I needed. Sad when it takes something like that to feel we are being heard and validated. I think when we enter remission, we need a special doctor....like an in-between....somewhere in the middle of an onc' and a primary.

The advice I can give is to call the American Cancer Society and ask them to send you one of their booklets on "after treatment". I've had many of their booklets mailed to me and they have helped a lot. They are free, too! I liked the one concerning "after treatment/when treatment ends"....it did cover the subject of how we may feel once we enter remission. I think it will help. Support groups like this one are also a wonderful place for us to fill that need.

My prayers to you Susan and Karen

Tethys41 said:

Cancer Society Booklets
There has been a discussion about the after treatment booklet put out by the cancer society on another board. The information is outdated and downright misleading. I know that not everyone here agrees that diet is important in managing this disease, but there are many resources out there that indicate otherwise. One gyn/onc I talked with supported this view. Yet, the pamphlet the cancer society distributes recommeds the exact types of foods that will stimulate tumor growth, to gain weight lost during chemo. They also recommend avoiding cancer fighting foods, such as broccoli and cauliflower, to avoid the discomfort of gas. A woman on another board said she confronted the cancer society about the exceptionally bad information contained in their pamphlet. They replied that they only update them every 10 years. So, the bad information will continue to be distributed until the end of that 10 year window.
I know a woman who acheived remission after first line chemo for OVCA. She folowed the advice in this pamphlet and ate a lot of sugar and flour laden foods to gain weight back that she had lost. 9 months later, her CA-125 shot up and she was back in treatment. After her second line of chemo, and another remission, she made some moderate changes to her diet, cut down on sugar and flour, ate more organic, and started taking only one supplement that controls inflammation (curcumin). She has maintained a longer remission this time around, and although her CA-125 has crept up to one point above normal, it is holding steady. Imagine what her results might be if she incorporated a more comprehensive plan.

Oh no! I am so sorry for
Oh no! I am so sorry for recommending them then! I had no idea. I hadn't really used them for the nutrition aspect...more for the psycological; the feelings involved, etc.

Thank you for correcting me. I would hate to be giving wrong or poor information.