|
Scheduled Onc visits at 2nd Year of NED
I am a newbie to this site and was diagnosed with triple positive breast cancer back in June 2009. I underwent the works: surgery, chemo, rads. I'm now on Tamoxifen. I was wondering how often patients go in to see their oncologists at the 2nd year of NED( no evidence of disease)?
Your input is much appreciated. Thanks! Ines |
Re: Scheduled Onc visits at 2nd Year of NED
At that point, I was going every 4 months. I am 7 years out and my onc still sees me every 6 months.
|
Re: Scheduled Onc visits at 2nd Year of NED
I was dx nov. 09. I'm looking forward to celebrating my 2 year this nov.!!! I see my onc. every 3 months. I'm not sure when this changes. I also see him every 6 months for zometa. Gods blessings to you and your family.
|
Re: Scheduled Onc visits at 2nd Year of NED
I stopped seeing an oncologist at about 3 years out, when I stopped the Arimidex. I think I had to have a yearly visit for 5 years, to fulfill my agreement with the clinical trial folks, and those last ones were done by my PCP. I didn't see anything important or protective about visiting with the onc -- we usually just chatted about non-medical things. We agreed I'd report in if I had any worrisome symptoms but neither of us felt the need to schedule arbitrary visits.
Debbie Laxague |
It Depends
Like DebL and Becky, I was diagnosed stage 1 and have stayed NED. I have only seen an onc when I have had questions -- such as when I was interested in a clinical trial for Tykerb as a preventative drug. My PCP has handled everything else, including prescribing whatever imaging or other testing like CA 15-3's that we agreed upon.
But had I been diagnosed at a higher stage, or if I had higher risk factors such as if I had been BRCA positive, for example, I might have chosen to see the onc a little more often. So.... it depends. A.A. |
Re: Scheduled Onc visits at 2nd Year of NED
Just to clarify (AA), I was stage 3a, definitely not early stage (I'll leave my signature below).
The way I saw it, the visits to my onc didn't offer protection, and they didn't offer solace. I liked to visit with him -- as we enjoyed somewhat-eclectic conversations about things like the benefits of exercise, and weight control, and looking our mortality in the face -- but he had no protection to offer me at those arbitrarily-timed visits. Indeed, "early" detection of mets offered little protection to me (brain mets excepted, and since I didn't get Herceptin, those were unlikely to be my first site of recurrence). I knew what symptoms were concerning, and I did make special visits for a few of them. Later on, my PCP responded to a few concerns with appropriate f/u (an MRI for persistent migraines, and a BRCA referral for a new discovery of pancreatic cancer in a maternal cousin and 2 previously-hidden breast cancer diagnoses in maternal aunts). All those concerns proved to be groundless (negative MRI of brain, and no BRCA mutations found). I am not saying that this (avoidance of medical encounters) is the right style for everyone. But I do think that it's a fine style for some of us. Vigilance and frequent testing may reassure some -- not a bad thing. But it probably will not affect the ultimate outcome, should we have a recurrence. If any one of us feels more protected by frequent onc visits and testing, then I am fine with that person pursuing those options. But it is also true that there is no evidence to support that style of care, and so for those of us who are more comfortable with fewer medical interactions, it is perfectly reasonable that we follow our gut, or instincts -- and inform ourselves of what symptoms are concerning and should be reported, while eschewing those arbitrary onc visits. I'm curious if there are other on this forum who share my approach. My perception of the culture here is that "more is always better" is the majority-opinion. Which is fine. We are each the best person to make that call, for ourselves. I only post this evening to be sure that if there are others who might feel differently, they feel okay to express their opinion. Debbie Laxague |
Re: Scheduled Onc visits at 2nd Year of NED
Hi Debbie. Thanks very much for posting the correction, and I am very sorry that it was necessary to spell it out. It was clearly my mistake, unintentional but not helpful on my part.
AlaskaAngel |
Re: Scheduled Onc visits at 2nd Year of NED
Dear Survivors/Warriors,
I thank you kindly for your responses. I appreciate your input. As for me, I am done with treatment( surgery, chemo, rads) and I am trying to move FORWARD with my LIFE. I work at keeping my Temple( mind, body, soul) STRONG! I am doing what I can to better my overall life and not think about what the future might have in store for me. I can relate to the Survivors who shared that less is more in terms of medical follow up. I know the 5 year plan and beyond is for my good. My oncologist and other team of healers are my safety net. God, I have to say, is my number one Healer. What I struggle with is the idea of going back to the place that holds so many awful memories. Don't get me wrong, my doctor and the nurses who helped me with my recovery were/are wonderful. Oncology is a tough line of work and not for wimps, that is for sure. The thing about the wellness check-ups is that I am trying to move forward with my life and every time I have to step into the building it's like reliving bad memories all over again. It's a psychological game of sorts that I am working out. I suppose it's all part of the anxiety and stress that comes along with having to undergo labwork, scans, and doctor visits. There is a balance that I have not, in any way, mastered. I feel the need to say that I do go to my scheduled appointments and I do take the meds prescribed for me. I have completed two years and have several more to go, but I know that doesn't mean that will be it for me. I am sure more is to follow after the 5 year time frame has been completed. I told my husband that this is not the kind of attention I wanted. What to do, this is my new normal. Take care, God bless to all. Ines PS Becky... I have to say that I LOVE your quote. I might have to borrow it for another site that I am a member of as well. Hope you don't mind. |
Re: Scheduled Onc visits at 2nd Year of NED
Like Becky I go every 4 months now.
6 yrs. out. But that is what I requested from my onc. He goes along with me ...I tell him I love him too much to go without seeing him any longer. He laughs at me and says every 6 months is what I should be doing. But I want 4 and my insurance does not mind. Best Wishes, Jean |
Re: Scheduled Onc visits at 2nd Year of NED
Truth be told... I saw my oncologist for the 1st year of treatment. Once I reached my 2nd year of NED, I was assigned a NP and saw her every 4 months, oncologist annually. The plan is to continue seeing the NP until a years time and then I will see my oncologist. I have one more visit, I have been told, with my radiology oncologist. She is a gem as well.
Best of luck to all. |
Re: Scheduled Onc visits at 2nd Year of NED
I am 18 months out from diagnosis, and have not seen my Onc since April. I have not received any letters from the hospital for a follow up appointment- should I be requesting more regular appointments?
|
Re: Scheduled Onc visits at 2nd Year of NED
As you can see Dr. handle appointments differently. I was seeing my onc every three months, graduated to every 6 months and now see her every year. But I see my surgeon every year also. I see my onc once a year in June and my surgeon once a year in December. So technically I am still on a 6 month schedule. It eases my mind to see them even after 5 years.
Donna |
Re: Scheduled Onc visits at 2nd Year of NED
I'm seeing my oncologist every 6 months currently - just passed 4 years mark in June since mastectomy in 2007. After my initial lumpectomy, chemo, and radiation in 2003-2004, I was seeing the oncologist every 3 months for the first year, and then gradually prolonged to 6 months and then annual. My mammagrams were always painful but 'normal' until I finally requested one through the surgeon. [I was very 'sick' and couldn't go back to work for several days.] That's when the 'scar tissue' (never had been told by anyone except the mammagram technician blurted out after the procedure that day) was finally confirmed to be recurrence all along.
What I'd like to caution others is that lab works usually give better indication of what's going on. My lab report always showed some strange stuff, but was brushed off as 'that's just me'. I was losing weight - always an indication of some type of serious problem, and had to use prescription skin medicine - another sign of something's not right. I was lucky that the 2, 3 car accidents I had during that period were all minor. Because I'd also had brain tumor (unrelated to bc) surgeries, we attributed everything (fatigue, forgetfulness,...etc.) to my brain tumor history and neglected the possibility of bc recurrence. Not trying to scare anyone. Just wanted to share my own experience that we have to be vigilant and pay attention to our own physical condition. |
Re: Scheduled Onc visits at 2nd Year of NED
MuscleGirl to Emmastarr:
Absolutely! Contact your oncologist and schedule an appointment. It sounds like the clinic fell asleep at the wheel. At this stage of the game, quarterly visits are recommended for you. You deserve the best possible care available, Emma. PS. I am a newbie and I am learning how to navigate this website. It has so many features. I will eventually be able to jazz up my page. |
Re: Scheduled Onc visits at 2nd Year of NED
@ Jackie07. Thank you for you input and honesty. Yes, it's true we do have to be vigilant about our health. Glad to hear you are going STRONG!
Ines |
Re: Scheduled Onc visits at 2nd Year of NED
I'm six years out and triple pos too and think in the second year I saw my onc every six months but now see her yearly!
I dont feel the bad memories you do when I return though and am just so pleased to be walking through there as a survivor rather than a patient:) |
Re: Scheduled Onc visits at 2nd Year of NED
I can't remember exactly, but I think I saw the oncologist very four months for three years, then every six months year four and five. Now it's every year. I was miserably sick during treatment, too. But for some reason I think of the cancer center as a place of healing. Go figure. Thankfully I have no trouble going back.
|
Re: Scheduled Onc visits at 2nd Year of NED
I am 6 years out and I still see my Onc every 6 months.
|
Re: Scheduled Onc visits at 2nd Year of NED
I am two years out and just now sorting out when to see who, when. It was surgeon every 6 months, onc every 6 months, radiologist every 6 months...The not so fun part was that everyone's six months hit at the same time. I tried to schedule a group session, but they wouldn't buy it :). So I would get examed, get dressed go down the hall, get examed, get dressed go down the hall.... Last visit the onc said he would contact surgeon to see if they could share the 6 months visits so that basically I would see each of them once a year. I see onc on Tuesday...see surgeon next week (basically to learn the "plan" because she is retiring at the end of the year...so who's gonna hold my hand? :\
|
| All times are GMT -7. The time now is 09:57 PM. |
Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021