Follow-Ups and Putting My Foot Down
I also second-guess myself but I put my foot down today and hope I made the right decision. I had my surgery last June and 5 brachy treatments too follow. I started my 3-month follow-up with my gynecologist oncologist last October (although she saw me a couple of times after surgery) and saw her in late January and will see her agin in late April, etc - every 3 months. The radiation oncologist saw me about a month after final brachy in September and scheduled me to come back in February but I had to move that visit to today. My September visit with him was very stressful. The exam hurt (although not with my women GO) and I ended up with a UTI afterwards that took 2 rounds of meds to get rid of. As it is, going to the GO every 3 months is stressful so him wanting to me multiple times a year makes it like every 2 months and I was super anxious today. My BP was high and I was stressing out. Note - I am doing great to date. My exams/tests with GO have been great. I have lost almost 20 pounds, I am eating healthy and exercising, I did 15 sessions with a pelvic floor PT and am up to size 6 dilator using 2-3 times a week. I feel good, no issues and am in as good a place as I can be mentally and emotionally. No side effects from the brachy that i am aware of. When he came after the nurses 15 minutes of questions I asked him why I needed to see him. He said he always has his patients follow up with him every 3 months the first 2 years. He knew and I mentioned to him that I am doing 3 month follow ups with the GO and that this would be double the number of annuals visits for standard of care and it would like very other month and just too much for me. He said it was my choice if I did not want to see him. I said I didn't understand the medical necessity if my checkups with GO are ok and I am not having any issues. I I have not come across anyone having that many checkups by both oncologists. I told him that I would continue with my GO and obviously if anything changed she or I would reach out. I like him as a doctor and I know he is tops at what he does but not sure of the reasoning. I do go to a teaching hospital medical center and wondered if it was more geared towards that or something. I think I had asked once before if anyone had ongoing follow-up with RO and no one did so I feel I made the right decision but as noted I always second guess myself so looking or some affirmation I suppose. I thanked him for understanding and said I hoped I would not see him again but will I hav a black mark next to my name for declining follow-ups with him? Thanks.
Comments
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Hi, Woodstock
I’m so sorry you’re a little unnerved by this! I would be, too! I like your “put your foot down” action! Bravo!
I can’t speak to your dilemma/decision about the radiologist specifically because I didn’t have radiation, but it does seem excessive. I think seeing your GO every three months sounds right and should be plenty! And I completely empathize with the stress and anxiety associated with those appointments! NO one wants to go through that four times a year, let alone EIGHT! I would go by whatever the GO recommends. And his answer….cuz that’s what I always do…didn’t seem like a decent answer to me at all! And, excuse me, but isn’t his expertise in directing radiation and looking at pictures, not actual flesh? I’m just sayin….
Hugs & love,
Alicia
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You don't need to do double visits. Way to advocate for yourself.
I always wonder, with stuff like this, a. do they need the money? b. are they just disgusting like my initial gyn onc, who I've written about extensively?
I would follow directions of your female gyn onc. BTW, I see my rad onc and my gyn onc, rotating check ups. I see ONE of them--not both--every three months.
xxoo
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Thank you. I just cannot understand this. My husband and with me and he expected some pushback when I questioned it and was surprised there was none and no indication of why he needed to see me as well as the GO. ???
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I really don't know and he really did not provide a justification. Sadly this radiation center is always busy and imo his time is better served seeing someone newly diagnosed or in active treatment. He is really a good guy and well respected so I am unclear. The GO was adamant about her 3 month check ups and I could see the alternating but may I ask why? Wouldn't (at least theoretically) the GO be more likely and experienced at detecting anything than an RO on an exam? I think he is great at his area o expertise but I am more comfortable in general with my GO. It's exhausting. Like I don't have enough doctor appointments to go to between all my ailments! Thanks.
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That's right! Honestly, I've thought that the rotating appointments could be a clever way to get different eyes on my issues, so that in the event a doctor missed something, the other doctor might catch it. Hard to know. Maybe they're "sharing the wealth" after the newly diagnosed have been taken care of via surgery and radiation.
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I had 6.5 weeks of external radiation and 3 brachy and my RO never once gave me a gynecological examination. I saw him weekly and the exam was always external stuff such as checking for enlarged lymph glands etc. I received my dilator from his nurse and my final exam was external only and he told me my care would be directed by my GO frim now on.
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I definitely agree with your decision.
I had 6.5 weeks external radiation and 3 brachy with my RO and he never gave me a gynecological examination. I did have weekly exams that were external such as checking for enlarged lymph glands etc. My dilator was given to me by his nurse and upon my final exam, my RO told me all future care would be directed by my GO. This was just as I liked it. My GO exams then began their 3 month cycle.
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Thank you. I really worked myself into a frenzy over this and was very stressed out last night. I spent a couple of hours googling EC post-treatment follow-up again and could find nothing that spoke to anything more than the 3 month cycle by your GO the first 2 years.
I did not come across anything about follow-up with an RO unless you had specific issues relating to radiation treatment which I do not. Of course I want to be checked for recurrence which all the literature speaks to is almost always found by exam or symptom reported by patient particularly the first few years but could find nothing to support any increased intervals or frequency.
I will talk to my GO when I see her again in early May for my next check-up. I know I made the right decision as I can find no medical necessity for duplicate visits as I am having no post-brachy issues at this time but I am still feeling distressed over this and being out in this position.
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And I am afraid to look in MyChart at my visit notes from yesterday to read what he wrote!
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Woodstock,
Oh, yes! My Chart visit Notes/Summary anxiety! Take 5 nice slow, deep diaphram inhales and forceful exhales. I trace my left hand. Inhale up at right of thumb and exhale down and then inhale up right of your index finger and exhale down and so forth to pinky X 5.
((Hugs))
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That sounds good. I did a short meditation this morning when I did Mr. Dilator but still feel stressed and deep breathing always helps!
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It’s nice to see you here, Primavera! I’ve thought of you often and wondered how you were doing. How are you?
❤️, Alicia
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Yes, we are always so happy to see our friends pop up. ❤️
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I see the gynecological oncologist and the radiation oncologist every 6 months, but not in the same month. They both do a pelvic exam and I don't mind since the vaginal vault is frequently the site of recurrence. But every 3 month would be too much for me.
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Hi Alicia and BluebirdOne! For some reason I didn't see these notifications. I come here once in a while to check on all of you. I'm glad you're doing well.
What a year it was: Red devil almost killed me, then Taxol was a breeze. Then mastectomy in April; it went well and surgeon said they found no cancer anywhere; but then I got shingles!
Had reconstruction breast surgery in December and the last Herceptin/Perjeta in January; then I took a break from everything.
Taking Arimidex/Anastrozole and tolerating it well. They diagnosed osteoporosis and Anastrozole will make it worse, but what can you do? I'll start treatment for that soon.
Will go back to breast oncologist in April and I'm sure I'll have the scary scans sooner or later. I wonder if the nodules in my lungs have grown or if my liver cyst is still the same size. But since there's nothing I can do about that, I try not to think about it much.
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Primavera, So. It has been quite a year for you, sorry you had so many challenges. I am glad you came back to update us. This new website design is not optimal so we just do our best to work around the flaws. I also have a lung nodule, liver cyst and a thyroid nodule that they watch, scan is in May. Thanks for popping in! Keep in touch.
Denise
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Oh, yes, Primavera! Thank you for popping in! I knew you had a a lot on your plate with breast cancer and the gyno, also. I was worried about the Red Devil! Soooo glad you got through it! “Taxol was a breeze”….everything is relative, isn’t it? You are to be admired!
I’m so glad you’re doing better!
Denise is right about us adjusting to this new website! Not easy!
Keep coming back!
Hugs ❤️❤️❤️, Alicia
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\Hello. I know this was a post from awhile back and hope this finds you well and cancer free. I was diagnosed in May 2023 with Adenocarcinoma Endatroid . Lining of my endometrium very thick more than likely due to 1 mg of estrogen for many many years without progestogen. I am 75 yrs. old and have never had surgery anesthesia. I was beyond depressed and terrified. Long story short referred to Ongologist GYN who was God Sent!!!! I had robotic surgery, total Hysterotomy. Pathology came back Grade 1 , Stage 1A Figo. Everything seemed great, lymph nodes, etc., etc. BUT..... Found a small amount Lymphovasular invasion (not lymph nodes). In veins near site of orginal cancer cells. Margins benign. I met with the Ongologist/Radiologist and I am scheduled for 3 sessions (Mon, Wed, Fri) of Barachytherapy High Dose to prevent Vaginal Vault from getting cancer. I am not afraid of getting this. I have gone through soooo much already I want to be totally cancer free!!!! I was told I WILL NOT LOOSE HAIR ON MY HEAD. Radiation may make you loose hair only where radiation goes. Is this true? This had been quite a roller coaster ride for me. First pipeline biopsy in May was inconclusive although I had severe vag. bleeding. Did another biopsy with my regular GYN in june and that is when it came back with the dreaded news. I was not surprised. I feel that if I was on Progestrone along with estrogen all these years my lining of my uterus would have not grown soooo thick and abnormal. But, water under the bridge. My surgeon now will be my new Dr. Young and amazing. I feel blessed what an amazing surgery he performed and count my blessings.
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