Please Help A Devastated Daughter...

[heyjulie]

Christmas of 2019 is the worst nightmare that I've ever had.

I haven't fully recovered from the postnatal depression when I suddenly heard that my dearest dad is diagnosed with prostate cancer...he is only 61, with a PSA 4.68, a Gleason score 3+4 and besides Pca, they also found intraductal carcinoma in the needle biopsy...My hands are shaking when I type these...

I spent every day crying. I hate myself for being so vulnerable, but I love my dad more than anyone else in the world, even more than my daughter. I would die for him.

He is not in the U.K at present and as he has private insurance, I am thinking about getting him referred to the hospital in the U.K for further treatment. The United States is also an option. But I really don't know if there is any difference between these two with regards to surgery, post-surgery, etc. Or do you think he should stay at home to get treated?

Please kindly advise, if there is a good surgeon here, I would really appreciate it! Is Royal Marsden a good choice?

I cannot thank you enough.

[GP24]

I understand that you are very worried but your dad does not have aggressive cancer. Here is a trial that monitored patients with Gleason 3+4 cancers and similar. Only 1% of the patients that did nothing for 10 years died from prostate cancer.

nejm.org/doi/full/10.1056/N...

I also had intraductal carcinoma that was no issue once the prostate was treated.

[6357axbz in reply to GP24]

Good response GP

[heyjulie in reply to 6357axbz]

Thank you!

[heyjulie in reply to GP24]

Thank you so much, GP24!!! I burst into tears when I read your response. Thank you thank you thank you! I am so worried that it is even hard for me to breathe these days. Now I am more relieved. Do you think Royal Marsden is a good choice? I don't know if we need to go that far to the States for treatment as it would be quicker and easier here in the U.K.

[GP24 in reply to heyjulie]

Yes, Royal Marsden is a good choice. But your dad has to make the right decision and avoid side effects from treatments. He will have to live for maybe 20 years or longer with these side effects.

The usual reaction is to try to attack the cancer as fast as possible with all the available guns. There is absolutely no reason to do so now and it is much better to take time and get informed about prostate cancer treatment and the options you have. The disease will not change in the next months.

[heyjulie in reply to GP24]

I see! Thanks so much. I will definitely search for more options and talk to more oncologists concerning this. Thank you again!

[Tall_Allen]

Royal Marsden is a great choice.

Intraductal increases his risk level slightly from his "favorable intermediate risk" prostate cancer. It means that "active surveillance" is off the table, and he will require treatment. All treatment options have about a 90+% chance of curing him. You seem fixated on surgery, but that may not be his best option. Just what his best option is depends on the side effects of treatment he is willing to put up with. In addition to surgery, the radiation options that are curative include SBRT and brachytherapy. I'm pretty sure that Royal Marsden offers all of those. He should talk to specialists in each of them because a surgeon, for example, will be relatively uninformed about SBRT. He has time to meet with doctors and make an informed decision.

[heyjulie in reply to Tall_Allen]

Thanks a lot Tall_Allen for your very informative advice! The urologist at home seems very fixated on surgery so I thought that was the only option we get. Thanks for providing such detailed info on other options! I would certainly discuss that with specialists at Royal Marsden. Thanks again!

[Tall_Allen in reply to heyjulie]

Royal Marsden is running the PACE trials comparing surgery to SBRT and IMRT to SBRT. You may want to enquire about it there.

pcnrv.blogspot.com/2019/04/...

[heyjulie in reply to Tall_Allen]

Thank you Tall_Allen! I can see that the PACE trails provide very promising outcomes. I've penciled it down on my notebook. Will definitely talk with the oncologist regarding this. Thanks again!!!

[LearnAll]

Dear loving daughter...I think your father is likely to live for a long time. Put all your love into acquiring right knowledge about most suitable treatment for him and try to stay emotionally calm and ..you already know..Knowledge is Power !

[heyjulie in reply to LearnAll]

Yes you are absolutely right! I will try my best to learn it all Thank you!

[SooHwa99]

Inquire about getting some genetic testing done of the RP specimens. Decipher or whatever. It could very well inform your father as to his treatment options. Even though 3+4 is generally stated as being "intermediate favorable", the interductal portion of the biopsy would be concerning and may warrant further investigations as to treatment options.

[heyjulie in reply to SooHwa99]

Hi SooHwa99, thanks so much for the suggestion! One of the oncologists that I consulted at home also suggested genetic testing. I know the presence of the intradutal will increase the overall risk, so I am extremely worried about the genetic testing result, fearing that it may be something horrible. Do you think we should get genetic testing done first or the treatment first? I heard it would take a long time for the result to come back. By the way, when you mention RP, do you mean radical prostectomy specimens, not the needle biopsy specimens? Thank you thank you!

[oldbeek]

Urologists are surgeons. That is their specialty. Don't let the URO talk you into surgery. Listen to Tall Allen. He is very knowledgable. Take time . Breath. Study all the treatments.

[heyjulie in reply to oldbeek]

Thank you oldbeek! Yes you are absolutely right. It's always wise to listen to more options.

[DeanNelson]

Breathe...... breathe....... the men AND women of this group will support you unconditionally. I know it.

I experienced it, I’ve only been here a year. Look at my first post l, see every how every told me to breathe and sent me suggestions.

And lastly breathe...

P.S. he ain’t going anywhere . With a warrior like you on his team. This beast at got a chance!

[heyjulie in reply to DeanNelson]

Thank you DeanNelson! I've been here for only one day, and I am already so moved by your kindness. Talking to you calms me down.

[jrodrig]

Four years ago I had a similar diagnosis, I am now 61 like your dad. There are plenty of treatments. Follow the instructions of your doctors. Be calm and enjoy your life.

[heyjulie in reply to jrodrig]

Thank you jrodrig! I will try my best to stay calm and explore all options.

[Jimhoy]

As others have stated.... don’t rush into anything!!! His is not a lethal Dx!!!

Remember that Urologist cut and Rad Oncologist cook! Either way, one will make money of this and one will not!! Sort of asking a mechanic about replacing your car / verses asking a salesman about fixing it. They don’t necessarily play well together!!! Don’t forget second opinions. A repeat of your test are not necessary, just a separate set of eyes on it.

Jc

[heyjulie in reply to Jimhoy]

Thank you Jimhoy, I will keep your words in mind! Honestly, I've been through this myself and know how tricky it could be. Do you think I should consult a oncologist first, and a urologist after that? Thank you!

[Jimhoy in reply to heyjulie]

I don’t think it matters. More knowledgable members may chime in. Once you get all the info you can gather regarding the options, his quality of life issues, combined with life style must be weighed in as well. Things like sexual activity, activity working, physical condition and activity level may or may not be effected by his decision.

Where as the aPC outcome are similar, the above conditions vary.

You have a really good start by joining Malecare aPC where you get a wealth of knowledge that you won’t necessarily get from your healthcare professionals.

Remember, the only stupid question is the one you don’t ask. Reach out often even if it’s to blow off some steam!!!

God speed

Jc

[bellyhappy58]

I am 62 this year..dx in Nov 2018...There are a lot of treatment options available and the good people in this forum can also provide you some guidance. Work with a good oncologist...that you trust. God bless

[heyjulie in reply to bellyhappy58]

Thank you bellyhappy58! Glad that I come to the forum and meet you all.

[Sandy752]

His numbers are slightly lower than mine 10 years ago when I was 65. Advice from others is good. Review the options. available. I had 40 treatments of external beam radiation with no side effects. It didn't cure me but hormone treatment (Lupron) for past six years has kept cancer in check (current PSA .22).

[heyjulie in reply to Sandy752]

Hi Sandy 752 thank you so much for providing your case. When you mentioned external beam radiation, is it photon, or proton or carbon ion? The insurance company suggested proton or carbon ion therapy in Japan, but I am really not sure if these two offer any more benefits than the traditional photon therapy.

[Sandy752 in reply to heyjulie]

I had Image guided radiation therapy (IGRT). It is a form of 3D-CRT where imaging scans (like a CT scan) are done before each treatment. This allows the radiation oncologist to adjust the position of the patient or re-focus the radiation as needed to hit the tumor and limit other damage. By he way my Gleason was 4-3, PSA 6.8 with 10 of 12 biopsy samples cancerous. I live in Ontario Canada with government health insurance.

[Hidden in reply to Sandy752]

A decade is very substantial .. congrats 🎉

[heyjulie]

Thank you dadzone43! I am so happy to hear that you recovered so well. I will be strong and support my dad whatever happens. The only thing I am concerned is the intradutal thing...and I am not sure if that will make him an urgent case.

[dadzone43]

"Urgent"? No. Emergent? No. Significant? Yes.

The book I have most relied on has been The key to prostate cancer.Mark Scholz. 2018. Available on Amazon. Written for the patient and his family.

[dmt1121]

I think that the posts here have been accurate about risk level for your father's illness. It appears there are some very good treatment options for him with evidence to back them up. he will likely have a long life ahead of him.

Much of getting past the initial fear and panic is about becoming well-educated about the disease, treatment options and results of clinical trials. Using only the most respected sources for information online is critical to getting reliable information.

On a more "big picture" note...it's great that you love your dad so much and want him to have the best care. I would suggest that you pass information onto your dad, so he can become well informed and involved. It's important for him to feel he has an active role in his own healthcare decisions and research. It provides a sense of control over his future.

You might consider either sharing the healthcare advocate responsibilities with another family member or maybe another family member or close friend could take on that primary healthcare advocate role, so you can live your own life with your family. You can then still be involved but know he will be in good hands on a day-to-day basis.

As a new mom who has recently gone through postnatal depression, the dual burden of you being the primary healthcare advocate for your dad and attending to your baby could become overwhelming. I base this on my own experience raising my daughters and also now seeing my oldest daughter and her husband raising their daughters, while holding down full time jobs. My observations and suggestions are general, as I don't know your specific situation and this is of course entirely you and your father's choice.

I do know that most dad's want their children and grandchildren to be happy (even when we are sick) because we love them and because their happiness gives us joy too.

I hope you find the best care for your dad and the balance that works best for you and your family.