Newbie question

Hello,

I am seeking advice from those who have been on this path. I am not 100% confident in my local radiation oncologist. I live in a small town where there are no options. I am considering going out of state for care. 

Which would you put as first priority:

 quality of care or comfort of home?

Thank you for sharing your experience. 

Karen

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Quality of care.
Kbmcv likes this comment
Karen, I am sorry that you are in need of this type of support! But welcome! I this is a great group of supportive and caring people. I just finished treatment in February and can say that there were a few weeks when leaving the house was not possible, and I had a very good experience compared to most.. Also consider that your immunity will be compromised and being around school children might put your health at further risk.

I am also from a small town and saw a radiation oncologist that I just do not like at all. His staff was great and the treatment was successful so far, but I do not care to see him anymore. I think that if I had it to do over again I might go to a cancer center where all treatment is under the same roof and doctors are on the same page and there is someone to manage your team besides yourself. That being said I am a homebody and did not want to add travel etc to the stress of treatment.

Good Luck and keep us posted
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You are so kind to share your experience. I am having that exact struggle. I’ll let you know what I decide.
I fought to get a second opinion at Moffit Cancer Center which I'm glad I did but they confirmed the treatment plan would be the same so I felt better about getting it done locally. You will be going daily for 6 weeks so if that is an option for you and your insurance will pay it for out of state care that would be something to consider. I actually thought about driving daily 3 hours to Moffit but so glad I did not. You might check with CCOA in Newnan Ga. I talked to them and they had a good out of state program with lots of assistance available but my insurance would not pay out of state. I'm in week 5 now and very glad I stayed home but that may not be the best option for you.
Olga, Kbmcv like this comment
Definitely quality of care! And seek out a major medical center, if possible one affiliated with a university. Quality of care can make a huge difference in outcome.
Kbmcv, Cleo like this comment
Hi Karen. I would ask your home radiologist about detailed treatment plan: how much Gy he wants to use for your rectal area, how many times, does he want to radiate your groin, and if he does, how many times, what margin he wants to take around your tumor. I would compare it with the treatment plan of out-of-state radiologist you want to go to. If both radiologists follow national guidelines, probably you will get the same results. I had a similar situation with my Cyberknife treatment of my liver metastases. In my case one doc who was only 30 min drive from my home offered 30 Gy, another one who was out of state and one hour of drive offered 50 Gy. I had to talk to my home radiologist to change my dose to 50 Gy because according to some studies there are better outcomes with the higher dose. My home radiologist agreed to do that, so I got the same service but closer to home. I hope it helps. Hugs.
Kbmcv, Lily like this comment
I'm sorry you have a reason to join our group, but so glad you found us! I was fortunate to be near a big city with good doctors when I was diagnosed in 2008. I would go for the facility that offers the best treatment based on that facility's reputation and doctors. Being at home is great, but you must feel confident with your doctors. I wish you all the best as you sort out your options.
Kbmcv, Cleo like this comment
Hello Karen...sorry you have to join this group but it will get you through ANYTHING...tomorrow is my 9th anniversary of joining the BFAC, two days after I finished treatment...so much trouble would have been avoided if I'd found it earlier!

I worked through my treatment...had a half-time/three-quarters job and a supportive group at the museum. My oncologist suggested to have the radiation in the late afternoon as it would make me feel tired, and that helped. It was so good to have the comforts of home. Question...why are you not 100% confident...have you talked with other patients?
Happy anniversary!
I have been thinking about you in El Paso and hoping that
family and friends are safe .
Thank you for the warm welcome. Congratulations and Happy Anniversary. The reason for me not being 100% is...His practice, he and one other doc, have treated 10 anal cancer patients a year. Also, he has a medical blemish on the record from 20 years ago that I can’t get out of my mind.
Hi Cleo...I was not near the mall in question that morning, but often am in that area...have friends who were shopping nearby and just the police operation was scary...another friend is visiting one of the injured, who lost his father in the attack...the scars from this will be for life, but the city is resilient and funds are being raised to help the families of the victims, etc. Thank you for asking...
where are you located? 10 anal cancer patients a year is not that insignificant...do they have up-to-date equipment IMRT. Do they work as a team with medical oncologists, colorectal mds,etc.

A second opinion at an academic center might be useful. Trust is important and you shouldn't repress your concerns. Do you know people that have been treated at this center? Do you have a trusted family Dr or someone that would give you an honest opinion? (this is difficult as drs cover for each other and are reluctant to be critical of other docs)
These are all questions I am asking. I am not sure what equipment they have but he assured me it was as good as the academic centers. I have an appointment at a large city cancer center for a second opinion. Thank you for giving me a lot to think about. This is a big step in my life.
Hi Karen, I'm adding my comments to both your posts. I didn't like my oncologist and was at a specialist cancer centre. I gritted my teeth because I thought she was competent and I didn't want to delay treatment of a fast growing cancer by a re referral at that point. The minute I'd got the 3m check up out of the way I got referred somewhere else and completed my checks with someone I liked.
Secondly, I'm older than you and this was my second cancer so maybe I didn't start out fighting fit, but I definitely couldn't have worked. I wouldn't have felt comfortable in the public eye through most of the time. Towards the end and for a couple of weeks afterwards I was sleeping about 16 hrs a day. I know you want life to be normal, and it will be again, but you just need to go with this and take care of yourself. Enjoy the unhealthy food you wouldn't normally eat (and the quantity)and know we're all with you.
One more comment...I was uncomfortable with my radiation oncologist, who had told another anal cancer patient, with her son in the room, that anal cancer was ONLY caused by anal sex...she had terrific hang-ups about sex, never once mentioned the issue of vaginal stenosis, etc. But she was skilled in her work and I did go with her. It's so hard to know what to do...keep asking around and the answer will eventually be there.
Cleo, Olga like this comment
I tend to veer towards quality of care if at all possible. Some dont have this option and have no other choice. For me, it is so important to choose a team that is willing to work with me. Treatment is about 6 weeks altogether. If u have to go away from home for treatment just make sure there is someone who can care for you. Hope u will be on your way to healing soon.
Quality of care. I opted for close to home and felt comfortable with my choices. But I have chosen to do additional follow-up care with a doctor I should've have consulted with in the beginning. I was close to home for treatment and going into a major city would have been a hassle and taken more drive time, but i think I might have fared better with the radiation. Unfortunately I will never know. My nurse was great but came to find out she was filling in for the normal AC nurse who was on maternity leave. Would have been good to know beforehand. Definitely ask the questions about their experiences with this treatment - and include the medical staff as you will have more interaction with the nurses.
yes, it's all about the nurses! The Drs diagnose, plan treatment and moniter
treatment progress and problems. n terms of self home care, nurses are the best source of what creams to use and how to deal with side effects,etc
I was in constant communication with the nurse practitioner via the online
medical health record
I went out of town and got my second opinion from a university hospital. The doctor was fantastic, knowledgeable and reassured me that getting treatment at home would be fine. I thought this might reassure you. He did say if I needed advise or support to contact him at any time during my treatment.
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August 2, 2019

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Anal Cancer

July 17

0.1 - 1.0 cm

Mitomycin

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