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I Don't Know What To Think Of My Oncology Appointment-Need Opinions

Pat51
Posts: 130
Joined: Feb 2011

I was recently diagnosed with UPSC. I had a total hysterectomy and surgical staging done on Feb. 18 and received the results a week ago. I was staged at Stage 1B(by the old staging chart) and Stage 1A (by the newer staging chart)I was not told what grade tumor but think it is probably grade 3. Before surgery I had a meet and greet with a local regular medical oncologist who left me with the impression that he had never seen a UPSC case before. I then made an appointment at a larger medical center about 2 hours from my home with a gynelogical oncologist for a second opinion, hoping that more cases of UPSC were seen at a larger facility. I took all of my reports and CT scans. The gynelogical oncologist told me that I had now known for a couple of weeks that the diagnosis was UPSC and should be use to it, even if I did not know the stage. The standard of care would be 6 rounds of carbo/taxol, he would not recommend radiation as it usually did no good. There was a 50% chance of recurrence and if I did chemo it may reduce the chance of recurrence to 35-40%. There would be no follow up other than a regular physical every 4 months....no CT scans, chest X-ray or CA-125 test (which he said he did not believe in). My daughter asked how we would know I had recurred and he said we wouldn't until there were symptoms. My thoughts were....wouldn't it be better to know if there was a lung met or other met the size of dime rather than waiting until there were symptoms and it was the size of a lemon?? I also had my tumor sent to Caris Life Sciences for assesment, which he told me was a total waste of time and money!! He made me feel like I was wasting his time since I already had pathological staging and knew I had UPSC and I shouldn't be asking questions! Just do the chemo and shut up and wait!

He was listed as one of best gynelogical oncologists in the state(there are only a few). I also have an appointment at Mayo clinic, which insurance does not cover. Am I wasting my money (I am told about $4000.00)by paying for another EXPERT opinion....should I expect a repeat of today? Or should I find a teaching hospital/facility within the state that would be covered by insurance? Is this the oncology experience everyone has? Or am I expecting too much??

I am very grateful for the Stage 1 A/B staging, which is much better than I anticipated. I intend to do the chemo to increase my chances and pray that it does it's job. However, does everyone just wait around to become stage 4 before checking anything?

I am sorry if I sound like I am whining, but this oncology appointment was not what I expected and wanted to know what others on this board have experienced. I would appreciate any input.

Pat

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Hi Pat,
Unfortunately your experience is pretty much what can be expected with a UPSC diagnosis, but Hooray for your Stage 1A diagnosis! I can tell you from my experience at a large cancer hospital that the treatment that has been recommended it standard of care. Radiation is usually not given for your stage as it is usually reserved as a second line treatment in the case of a recurrence. As for follow up, mine was stage IIIc and yet my gynonc only images if I have symptoms or an elevated CA125, which for me is not a good marker. Most insurances don't pay for routine imaging for UPSC because they don't make a distinction between endometrioid and papillary serous histology, and they both code to uterine cancer.
And to answer your question about waiting? I don't want to sound too gloomy, but yes. We wait and hope for the best.
I hope your chemo goes uneventfully. I kind of enjoyed the experience, because I was forced to slow down and be a little selfish.
Take care of yourself and you'll do just fine.
Laura

Pat51
Posts: 130
Joined: Feb 2011

Thank you for your reply.

I am very happy about the Stage 1A diagnois. I was originally told to expect stage 3, so stage 1 was a nice surprise. The CA125 may not be a good marker for me either since mine was 22.2 prior to surgery.

Thanks for explaining the standard follow up for UPSC. It is just scary thinking that there will not be much monitoring for progression of disease. I know that every ache or pain will give me symptoms...either real or imagined! I am not sure how I am going to handle that. I am VERY worried about the chemo and what side effects I will experience. I have to go back to work in a few weeks. OK, lets face it.....I am worried about everything....does this ever get better?

Thanks again for your reply.

Pat

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Pat, I'm sorry you had such a negative experience with the gyn-onc. He may wonder why you are consulting him after the staging surgery, rather than before, since that is one of the main areas of expertise for this specialty - they are trained for the extensive surgical evaluation of potential metastases of gyn cancers. Even as a second opinion, it may be expected it would have been prior to having surgery. How does his long term followup compare with that of your surgeon? Would he/she be following ca125, doing any scans? Was you ca125 elevated prior to surgery?

I was referred to a gyn-onc by my med onc and reg gyn, and he has managed my care including chemo and also not recommending radiation (however at Stage 4 it would be a bit pointless). However in your case, if all cancer is contained in pelvic area, it could well be the appropriate treatment - there are others on the board who could better address this than I.

If your cancer grade is 3 as most UPSC are, then the carbo/taxol chemo is a good treatment plan to hopefully eradicate any remaining cancer cells. And there is a newer protocol of giving taxol in a dose dense regimen weekly that is considered more effective than the every three week routine of old. Cancer cells could have escaped detection in surgery and this systemic treatment covers that possibility.

You should be thankful at this point that the cancer was discovered at such an early stage. However, if it was me, I would definitely go with the chemo. It's not a walk in the park but in the long term well worth knowing that you have given yourself the best odds for a cure. No one wants to have cancer and but if it happens, the best of all, then, is No Recurrence.

Annie

Pat51
Posts: 130
Joined: Feb 2011

Thank you for your reply. You replies are always a wealth of information for me and greatly appreciated. I am very thankful for the lower stage 1 A/B that surgical staging revealed. Pelvic washings, all nodes, peritneal biopsies, lympathic vascular invasion were all negative and the tumor was contained to the uterus.....all things that I am very grateful for.

At this time, I am searching for a gyn/onc but there are none in close proximity to my home. My gyn/surgeon made an appointment for me with a regular medical oncologist and when I asked for a gyn/onc, told me that the regular oncologist was comfortable handling my case! So I guess that I will not be getting any assistance from my gyn/surgeon! It seems that this will be a trial and error process. My regular GYN has not talked to me about ANY follow-up at all, it seems that he feels the oncologist will be in charge of all follow-up. The oncologist I saw today was not doing any follow-up other than a regular check up every 4 months....no CT scans, Chest X-Ray or CA125 tests at all without symptoms.

I do intend to do the chemo, as my ultimate goal is for no recurrence. I would like to take the easy way out but I know that would not be the BEST way. That is why I was a bit surprised by the doctors reaction to my sending my tumor to Caris Life Sciences Lab for assessemnt. I thought that it would be a step ahead to know what chemo would be most effective on my particular tumor. This doctor told me that tumor assesement was a waste of time and money. That the lab preyed on people like me looking for answers!! I am not sure if I should be taking his statements at face value or not. I know I have A LOT to learn about UPSC cancer.

Thank you again for your reply. It is inspiring to know that you are doing well.

Pat

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I think you need a Gyn/Onc at least for consultations. A medical oncologist can give chemo but he or she needs a Gyn/onc for consultation. My Gyn onc gives me all my chemo. Some of the medical oncs don't like that because it is competition. A medical oncologist can give you chemo; I would choose one that called or emailed a gynonc. Also, I believe you need chemo. If washings are positive I would ask about intraperitoneal chemo also. I believe you need to get started onchemo before those cells start seeding.

You can do this. It's tough. One at a time. If the Docs won't hold your hand and hug you let me tell you we will!

Love,
Diane

susangr
Posts: 64
Joined: Oct 2010

I was diagnosed in September 2010 with UPSC stage 1A, grade 3. In staging everything was negative except for some lymph vascular space involvement meaning there were cancer cells in the lymph space that had not as yet travelled to the nodes. The invasion of the myometrium was less than 50%. I had similar issues in finding a gyn/onc to care for me in the city where I lived. I requested a referal and was treated at MDA in Houston. I am one of those individuals who had the dose dense chemo protocol. I had Taxol weekly with concurrent pelvic radiation 5 times week followed by 3 brachy treatments to prevent vag cuff recurrence. After 1 months rest I had 4 additional chemo treatments 21 days apart administered by a local oncologists following the protocol outlined by MDA. I have now completed all treatments. My followup has been CTs pelvic, abdomen, chest 6 months after treatment with CA 125 and other bloodwork and physical. S o far so good. Checks every 3 months for first year, every 4 months every 2nd year, etc. with physical exam, CA 125 and CTs likely every 6 months or as indicated. My view of treatment was that it would be better to treat it aggressively initially to try and prevent recurrence than to look back and wish I had.

My best wishes are with you as you begin this journey. This site is a terrific source of information and support! Susan

Pat51
Posts: 130
Joined: Feb 2011

Thanks for the reply. Our diagnosis is similar but I did not show any lymph vascular space involvement. I know that MDA is a top medical facility. I am glad that so far you are doing well, I hope that this continues for you and that you will not have to deal with UPSC again.

Pat

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Songflower. We are both UPSC like you. A good healthcare TEAM has a good relationship with each other. I definitely think you need a gyn-onc; Regular oncologists don't have the expertise for this type of rare cancer.

I wonder what your gyn-onc doc would say if you told him that you'd like to stay with him but you need to be able to ask questions and needed a more open relationship. He does sound like he has a bad attitude and has some strange views - the assay was a very good thing to do and my CA125 rise coincided with spread of my UPSC and helped me and doc decide when to start tx. My doc does routine blood work and exams 3-4 months and scans only when indicated- not for screening. He told me I would be the key person to pick up recurrence - told me to notify of any changes that lasted a week or more.

Even if he doesn't believe in it, you can request things. I have requested regular HE4 tests along with the CA125 and doc has gone along with it. But I guess, bottom line, you should feel comfortable and confident in your doc.

My best to you. Mary Ann

Pat51
Posts: 130
Joined: Feb 2011

I found a new oncologist. The new oncologist that I found is a medial oncologist but is very patient and more than willing to answer any and all questions that I have. Before my first appointment with him, he had consulted with a different gyn/onc at a larger facility. The consulting gyn/onc is also affiliated at a medical college. It made me feel more comfortable that the oncologist I am seeing was very willing to send me to this gyn/onc so that I could consult with her face to face. He is going to continue to consult with the gyn/onc about my case and treatment. He spent over 2 hours with me on my first appointment. He also told me that he had a follow up schedule worked out with blood tests exams, chest x-rays and CT once per year. I feel much more comfortable with this oncologist than the first gyn/onc that I saw. I am starting 6 rounds of carbo/taxotere tomorrow morning. I am also scheduled to see a radiologist tomorrow.

I do feel comfortable with the new oncologist but I am still very nervous about starting chemo tomorrow.

Pat

Pat51
Posts: 130
Joined: Feb 2011

Thank you so much for your reply.

The GYN/ONC did not impress me and I have decided not to see him again.

I saw a medical oncologist that was suggested by my GYN. When I got there he had already went over my case and consulted with a GYN/ONC at a larger hospital and a medical college in our state. He has a much better bedside manner and seemed well prepared. I was impressed that he went ahead and consulted with a gyn/onc and was willing to refer me so that I could speak to her personally. After research, I seem to have found that regardless where I go, the treatment will be the same for me...the "gold standard of treatment" for UPSC. This oncolgist wants to start treatment immediately. The chemo of carbo/taxotere starts tomorrow morning. I have to admit that I am very nervous.

Thank you for the support.

Pat

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Pat I hope you are getting a port for your treatments. I did not get one right away, and was sorry that I did not get one at the beginning. I had very good veins before treatment started. I thought my veins would recover while I got radiation, so I could get my last three chemo treatments after the radiation. But I found out the veins do not recover.

Your port can be used for lab draws as well as chemo. If you get a smart port or power port it can be used for CAT scans, too.

I am glad you found an onocologist you are comfortable with. The fact he is consulting with a gyn/ono should make you feel your are getting the best treatment also.

I certainly understand you feeling nervous about the treatment. I think we all felt that way before we started treatment. The fear of the unknown. I hope you do well with your treatments and you have minimal side effects. We are here to answer and questions or concerns you have. In peace and caring.

Pat51
Posts: 130
Joined: Feb 2011

I am not getting a port put in....at least not at first. I was also told that my views were good, but I guess we will see!! The doctor mentioned a picc line, which I told him I would do if they sedated me. I was in the room when they tried to put a picc line in my husband. They dug around in both of his arms for over two hours and were NOT able to get a picc line in!!!! A nurse looked at my arms and said that I would not need a picc line...my viens were good but ....we will see!! My arms are still bruised from a blood draw taken before I could leave the hospital nearly 3 weeks ago.

I am very anxious about starting chemo in the morning. You are right....the fear of the unknown!! I am also hoping for minimal side effects.

Kaleena's picture
Kaleena
Posts: 1875
Joined: Nov 2009

Hi Pat:

Sorry you have to go through this. It is bad enough getting a diagnosis and then on top of it to deal with a doc like that. I know because I had one. Although my diagnosis was endometrial adencarcinoma, my original doc retired and I got a new one in the group who first, didn't look at my chart, didn't ask me anything and because I was NED at the time didn't care or examine me on my first visit with him. It wasn't until a year later that he got "excited" because he thought I had a recurrence.

Before even testing, he wanted me on chemo, told me I would have a permanent colostomy, surgery, then more chemo, etc. etc. I decided to get a second opinion and he wrote on my chart "Seeking other treatment". Next doctor in another hospital ended up giving back to the first doc and kept saying he couldn't believe I couldn't get along with that one. Also, they told me I needed radiation and that they couldn't operate.

I ended up going out of state (3 hour drive); ultimately had surgery Feb 2010, all negative, except one microscopic cell in one lymph node they removed, no chemo - no colostomy. Since then I have had two PET Scans (all negative).

He was a high profile doctor but his bedside manners were terrible! If he thought he couldn't get a "cure" he would just tell patients to go home, there was nothing he could do. I also noticed his waiting room the patients all looked gloomy, whereas before my first doctor retired, people would be chatting, laughing, asking questions.

Pat, it seems you know what you need so go with that instinct. After all, we are the ones that are going through it. Also, I still don't know what they can tell at those checkups! Other than thickening or feeling a mass. Usually they would give you a CT scan like every six months and stretch it out longer if there are no changes.

I am glad you sent the samples to the lab too! Keep with your actions, Pat.

My best to you!

Kathy

Pat51
Posts: 130
Joined: Feb 2011

The first gyn/onc also had a very good rating. I did not like his bedside manner and attitude and will not be seeing him again. I am sorry that you also had a negative experience. From your experience, it is obvious that it pays to get second and third opinions.

I did find a new oncologist recommended by my gyn. I do like the new oncologist and he is very patient and fields any and all questions and is consulting with different gyn/onc about my case. I am starting 6 rounds of carbo/taxotere tomorrow morning. I am anxious about the chemo, not knowing what to expect.

I am still awaiting the results of assay, but hope that it will be helpful.

Pat

Kaleena's picture
Kaleena
Posts: 1875
Joined: Nov 2009

Dear Pat:

How did your first day of chemo go? I hope everything went well for you.

(((Hugs)))

Kathy

Pat51
Posts: 130
Joined: Feb 2011

I had a severe reaction to the taxotere and definitely got the doctor's and nurse's attention! They were able to stabilize me in a little while and pumped me full of drugs so I slept through the remaining 5 hours of the chemo. I felt great the following day. I had a Neulasta shot on Friday and I am fairly achy and feeling down today. Hopefully they have the doseage and timing corrected and things will go smoother for the remaining treatments. Thanks for asking.

Pat

Kaleena's picture
Kaleena
Posts: 1875
Joined: Nov 2009

Pat:

Sorry to hear about your severe reaction to taxotere. I also had a severe reaction to taxol. They had to change my chemo and I ended up getting Carbo/Gemzar.

It was great they were able to stablize you. Sometimes a reaction is due to how fast they pump it in or they need to reduce the dosage.

You may feel really tired two days out from your chemo. It is only natural. Just rest.

My best to you!

(((hugs)))

Kathy

Pat51
Posts: 130
Joined: Feb 2011

Since this is my first chemo treatment it is a learning experience for me. The bone pain started about 24 hours after the Neulasta shot. Extra Strength Tylenol did not even touch the pain. I was extremely tired today. I am extremely fatigued with only the slightest activity. It is good to know that these are normal reactions.

Pat

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I too had a reaction to Taxol with my first treatment. And then I had a reaction to Carboplatin with my second treatment. I am able to get both drugs, but at a much slower rate than most people can take it. My taxol goes over 5-6 hours and the Carbo did go over 2 hours. Now that I am past the 6 doses of Carbo it goes over 3 hours. So my chemo days are very long, but I am thankful I can get the Taxol/Carb as that is the "gold standard" treatment for UPSC.

I read where is you take Claritin (can use over the counter version) before your Neulasta shots and several days after your shot, it will cut down on the achiness. I felt it did help me when I took it before my 6th chemo. I have not needed Neulasta with this round of chemo treatments.

Wishing you the best for your next treatments. In peace and caring.

Pat51
Posts: 130
Joined: Feb 2011

I had not heard or read about the Claritin before, but I will be asking if it is okay to try it with the next Neulasta shot. The achiness is terrible and the extra strength Tylenol does not begin to even touch the pain. So far the reaction to Neulasta was worse than the reaction to chemo.

Thanks for the tips...they are appreciated.

Pat

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

If you only have Tyelonal Extra Strength for pain, I think you need to ask for something stronger. I had some Oxycodone from my port being inserted, so I took some of that and it helped.

My onocologist had not heard of taking Claritin either. She said it would not hurt me, so she was okay with me taking it. It did reduce the post Neulasta pain significantly. Hope it works for you, too. Luckily I have not needed the Neulasta with this round of chemo. It was after radiation that I had trouble with my last 3 chemos.

Good luck with your next treatment. In peace and caring.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Pat, i am surprised you are getting Neulasta this early in chemo protocol unless you already had blood count issues. It is usually only given if it appears your bone marrow is not bouncing back fast enough to maintain treatment protocol. In first round I did not have low counts, but after a poorly drawn blood sample was extremely low, followed by a normal count the next day, Dr rec'd Neulasta 'just to be sure' I kept on schedule. If it is not necessary it would save you the discomfort -- i did find it worse than chemo side effects for the two cycles I received it.
On another note, i am glad your chemo is underway so hopefully you are on your way to a longterm affair with NED :-)
Annie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I was diagnosed with UPSC stage III-C in 1/09. I completed 6 rounds of Taxol Carbo and 28 radiation treatments, along with a 28 internal radiation treatment in8/09. My first check up in October 09 showed an increase in the CA 125. My CA 125 has gradually increased over the last 19 months. I had CAT scans done every 2- 3 months. I have never had any symptoms. I was symptom free before my diagnosis also. So I would not like it if no tests were ever done. My last CA 125 was 1530 and I started another round of Taxol/Carbo in 2/11. My CAT scans have shown 4 lymph nodes that have very slowly increased in size since I completed my first round of treatments.

I would want to find a GYN/ONO would would do some follow-up with lab and scans, as many times there are no symptoms with recurrence. Good luck in finding a doctor that will do the tests you want done after treatment is completed. In peace and caring.

Northwoodsgirl
Posts: 478
Joined: Oct 2009

Pat, please get a second opinion at Mayo. Most insurers pay for the second opinion. There are really good gyn-oncs out there. You are the consumer and you have the right to be empowered with as much information as possible to make an informed decision. You have a million questions as we all did and somedays still do depending on where we are in our journey. Take back your power!
Lori

hopeful girl 1
Posts: 454
Joined: May 2010

I have a very reputable gyno-sugeon-oncologist and he primarily follows CA125 (if it is a good marker for the patient-which in my case it is) as well as exams, and symptoms.

He will do a scan if CA125 goes up. He is not a big believe in scans because he does not believe in exposing his patients to extra radiation if not needed.

Cindy

Pat51
Posts: 130
Joined: Feb 2011

The oncologist that I am seeing now says that he uses CA125 as a good marker of problems. My CA125 was 22.2 before surgery, I have not found out what it was after surgery. I have a doctors appointment and blood work on Thursday, hopefully I will find out something then.

Pat

RoseyR
Posts: 471
Joined: Feb 2011

Dear Pat,

While competence is the chief trait we seek in an oncologist, we also need someone we can communicate with; we may be under treatment for several years so need to feel that, while respecting doctors' time, we can also raise important questions.

Am grappling with this problem to such an extent that am considering changing instiutions for my own treatment.
Under care at a prestigious urban cancer center since September, I don't doubt the competence of my team. My radiological oncologist is lovely, even giving me her email address. But my surgeon/oncologist, in five months of care, has yet to sit down with me for even a half-hour face to face consultation. Appointments occur right before chemo; a one-minute pelvic exam is followed by 'Do you have any questions?" as she paces about the room, giving the impression that she is merely in a hurry. Just three times since September have I asked her secretary to forward her an email about an important question. She never answers but just forward my questions to the chemo nurse, who phones with adequate, or inadequate, responses.

I now realize that I have sought several opinions on my treatment less from the need for more OPINIONS, per se than the EXPLANATIONS I receive from other oncs on the pro's and con's of varying treatment options.

Two oncologists at nearby institutions who gave me second opinions spent 40 minutes with me in a sitdown consultation--more time, ironically, than I've ever received from her.

Is it unreasonable to hope for a treatment style that considers me something of a participant, rather than passive complier, in treatment decisions? The chemo nurse (who has to field so many questions!) recently sighed that she wished I wouldn't do so much of my own research ("it just makes you nervous") and that I would "just trust that we want the best for you." I find this incredibly condescending. I have not expressed even tacit criticism of anyone treating me, but would she want her OWN daughter, diagnosed with a serious disease, not to do any of her own research or raise vital questions? (No I am not a physician, but were it not for my own online research, by the way, my own tumor would have been diagnosed a year earlier than it was!) We women need to be highly proactive, in my opinion, to be sure we are being treated with CARE.

It's easy to get to my highly rated treatment center and I like and trust my radiological oncologist, so hate to change course in midstream. But am feeling frustrated. Am I being too critical, expecting too much? Have any had similar experiences?

Thanks for any input,

Rosey R

Harrber's picture
Harrber
Posts: 9
Joined: Feb 2011

As a patient and also as a psychologist who has worked in oncology for many years - it is very disturbing to hear about your experience with your doctor - and nurse (usually the nurses are somewhat better )
There is so much research that indicates that the better the communication and relationship between a doctor and patient, the better the "outcomes" - not necessarily in terms of disease, but in terms of satisfaction and adherence to treatment as well as general quality of life. Being a partner with your medical team is so important - not that you need to or can ever know what they know medically - but that you are included in decision making, educated about your situation and generally feel that you are part of the team - since you are! Med schools are trying to train docs in communication and patient relationships but it has not made nearly enough of a dent - and of course there will always be doctors who are not interested in their relationship with their patient or the psychosocial issues a patient has concerns about.
If it is at all possible, I wonder if you could have a frank discussion with your team - sharing that you feel a bit condescended to, that you do best with information and understanding your disease and the treatments, and that it is very important to you that you be a part of the conversation - You can ask, if you want to do your own research, what does he suggest (always go to sites that end in edu, org or gov (although not all the org - non-profit sites are realiable.) - that way indicating that you respect him and would appreciate his guidance in this.
You need to navigate this in the way that works for YOU - and it is okay to ask questions and also expect to be treated with respect - And if there are other gyn/onc where you live, you can also consider a change of doctor if the relationship is not working for you and only making you more anxious or feel badly about yourself - that is the last thing you need - but if you do not have other options, it is worth a try to speak up - too often we don't say anything and without feedback, doctors can't know the impact of what they say - good luck with this

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