Link between Small call and BRCA2 ??

[positive-thinking]

Is there any link between having the BRCA2 and it turning to small cell? Are the odds higher for this to happen if you have the BRCA2 germline genetic mutation?

[positive-thinking]

Sorry not sure how to edit or if I can edit , I meant Small Cell in the title

[skiingfiend]

I have treatment emergent small cell. I do not have BRCA2.

teSC results from selective pressure on the cancer from the mechanism of action of the treatments. Up to 20% of mCRPCa patients have developed a small cell component to their cancer.

Catching it as quick as possible is important to patient survival. If it metastasizes to viscera there are not many good treatment options after chemo.

EDIT --

You can edit your post by clicking the more select control at the bottom of the post and selecting edit.

[positive-thinking in reply to skiingfiend]

Thanks for your response , I did know that lots of people get small cell and did Not have BRCA2, I also new that small cell has be caught really quickly . I was just wandering if there is more of a connection with small cell and BRCA2. ? Higher odds when my husband becomes mCRPC. Hope you are doing well and enjoying life to the fullest . Bless you

[skiingfiend in reply to positive-thinking]

Here is a case study.

ascopubs.org/doi/10.1200/PO....

It implies there may be a link between BRCA2 and SC. This is not evidence of a link.

I visited my MO yesterday, who is one of the top researchers in Canada and Internationally recoginized, he stated that the mechanisms of small cell prostate cancer are not well understood and this is currently an area of research. By this he means investigating the science behind SC - which is way early in the pipeline to developing SOC treatments and drugs.

This is the extent of my knowledge, maybe somebody with a more definitive answer will chime in.

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I wouldn't stress yourself worrying about things that might happen. Also if BRCA2 causes SC and your husband has BRCA2 what can you do about it in advance? Probably nothing. Regular diagnostics and monitoring changes in your husbands condition and reacting to them in a timely fashion will help you catch it early if it does occur.

Hopefully early enough that surgery is an option.

[positive-thinking in reply to skiingfiend]

Thanks for your reply, today is our very last day of seeing the Chemo doctor, I call her the chemo doctor because I think that's her special training she has here where I live is for chemo and a bit more knowledge than the average regular doctor here. After that she says she will turn our care back to our regular doctor. He is the one that did not send my husband to a urologist for the years and years he complained of having issues with peeing. I'm trying to make a case that just getting PSA blood work is not good enough. She wants that to be all he gets going forward with gleason 9 mets over the 5 count to bones and BRCA2. She says she knows nothing about BRCA2 and we do not have any scans here except Cat scans ( better than nothing ) . We have to fly to get another bone scan , ( that's all they will give us ). But she says scans are not necessary till PSA changes. Thanks for your information

[skiingfiend in reply to positive-thinking]

Shes wrong. I checked myself into emergency to get a CTscan proving that my cancer had progressed to sc without a change in psa.

SC does not emit psa so other diagnostics are required to catch it.

Remember 20-25% of mCRPCa men develop SC and this can not be detected with psa.

[positive-thinking in reply to skiingfiend]

I know she is wrong and every time I speak at each blood work appointment I get the furry eye brow because I'm just the wife and not a doctor ! The oncologist from Vancouver prostate centre gave us a whole 2 telephone appointments that lasted a few minutes. We have no oncologist now, this is another thing I'm going to try and push for, I'm scared !!

[skiingfiend in reply to positive-thinking]

Looking at your bio, it looks like:

1. Your husband is newly diagnosed (6 mos)

2. Currently on triplet therapy

3. All your #'s are moving in the right direction.

At this point nobody is worried about your husband's condition and he might get years on this treatment before castration resistance.

It is standard of care at BC Cancer that once they stabilize you - they move you to a 3-month cycle of minimal consults. In fact the oncologist will probably hand you off to an NP and you may not see the MO for a year.

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Two things can happen here:

1. Everything is great until PSA starts rising and you move to the next stage (80% of patients). This is the SOC most common path.

2. You develop SC and nobody catches it using SOC diagnostics (20% of patients).

They are not going to change their SOC practices because you are worried about a lower probability future event.

To handle case 2 you have to be proactive, if you detect or think you have developed a change in your condition and the MO/NP/PFP won't do anything. Check yourself into Emergency describing your problem and ask for a diagnosis (including a CT scan). Tell them you're a Stage 4 cancer patient and BC Cancer policy is for you to check yourself into Emergency in the event of a change in condition.

It is BC Cancer SOC to check yourself into emergency in the event of a significant event between consultations - ie increasing or unbearable pain. This is stated on the 1st page of the BC Cancer handout you should have received listing all the important phone #'s.

If you are coming down from up north I can recommend Lions Gate Hospital in North Vancouver. It is modern and nowhere near as busy as VGH. Show up early in the morning (4:00 am) and you will breeze through.

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Finally

1. it sounds like you are stressing too much on this issue and worrying about all future possible outcomes, which is not uncommon when you receive a new Stage 4 cancer diagnosis. Relax and focus on your current problem.

2. BC Cancer is not your only option, there are also community MO's that are not affiliated/employed by BC Cancer. You are still covered by the provincial health plan for all SOC options and you may get better service. Or you can stay with BC Cancer and still consult with a community MO. The community MO's may be more likely to order additional diagnostics since they are not constrained by BC Cancer bureaucracy and policies. BC Cancer is a machine designed to process a high volume of patients in a cost effective and timely manner while meeting SOC guidelines. This is not conducive to highly personalized treatment.

EDIT --

I'll add one other thing:

Browsing this site you encounter a lot of Americans (which in my opinion is a good thing, as well as our friends from all other parts of the world like maxone73 👍).

Canadian SOC is not the same as American SOC.

American SOC has a lot more diagnostic options and they test more frequently. American SOC also has more treatment options.

You need to learn and work the system you find yourself in.

[positive-thinking in reply to skiingfiend]

This reply is very informative and a lot of this I do already know but I did not know that we can also see a MO in a community ( not sure how I get referred to one ? Or even know which one to be referred to ) . I do unfortunately suffer from anxiety ( for years now ) so this is a challenge for me to go through , also my husband wants nothing to do with researching or even knowing about cancer. This is the only way I know how to help him stay with me, unfortunately my wish to have the cancer versus him is off the table. So I keep up on as much as I can and let him have the best QOL as long as possible. I thank you for this informative reply. I hope anyone that is seeing this and is seeing a MO outside of B.C cancer can let me know who they are seeing and how we can navigate to this. Have the best day

[skiingfiend in reply to positive-thinking]

Here is the search tool for Registrant Directory of the College of Physicians and Surgeons of BC.

Click on the Switch to advanced search button (if not already in advanced search) and use the search criteria in the image below to list all 146 Registered Practicing MO's in BC.

cpsbc.ca/public/registrant-...

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Search Criteria, - leave the name and city boxes empty

[Mascouche in reply to positive-thinking]

Sorry for what you are going through. Having cancer or being the spouse of someone who does can create anxiety in even in those who are not prone to anxiety. It is a life changing event.

Your husband is lucky to have you to investigate what he won't do himself. Not wanting to know might be his coping mechanism.

I am seeing an oncologist in QC but that is across the country from BC so not much of use to you.

For my part, I do have a BRAC2 mutation but no indication of any small cell situation at this time.

[positive-thinking in reply to Mascouche]

Thanks for replying, hope you are doing well with your care. Everything is too far from here ( Yukon ) . Appreciate the kind words . The very best to you

[skiingfiend in reply to positive-thinking]

The map on this page describes the range of Oncology services available throughout BC - available thru the hospital system in partnership with BC Cancer. In general, they will always try to service you as close to home as possible - at the lowest Tier that can deliver the treatment plan.

bccancer.bc.ca/health-profe...

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1 Tier 6 - vancouver

3 Tier 5's - surrey, abbotsford, kelowna

1 Tier 4 up north - Prince George

etc.

[positive-thinking in reply to skiingfiend]

Thanks so very much for all the time you spent replying and all this great info. I will be doing some research , this is all so very helpful !!

[EvFC in reply to skiingfiend]

This is all very helpful, thank you! I also live in BC. We aren’t connected to BC Cancer yet, as my husband just got the diagnosis a few weeks ago. We have met with a surgeon and have an appointment with a radiation oncologist on Apr 29. I feel like we have contact with so many different people I am not sure where we really belong at the moment. It would be nice if when you get the diagnosis someone could lead you through the system!

[positive-thinking in reply to EvFC]

In a perfect world that's how it should be , is unreal to me ! This is Cancer !

[skiingfiend in reply to EvFC]

The standard path is:

1. Your doctor diagnoses potential PCa using frontline diagnostics.

2. You are referred to a Uroligist who confirms the diagnosis and confirms the grade and stage. The U may order various tests including blood work, bone scan, CT-scan, prostate biopsy, etc. The Uro may also route you to other specialists for consultation. This determines your treatment path:

a. Early stage < 4 --- treat with curative intent (surgery, radiation, drugs).

b. Advanced stage = 4 --- treat with pallative intent (systemic therapy: ADT, chemo, ...)

3. If a) the Uro may lead your treatment and bring in other specialists as required. Or the Uro may refer you to BC cancer to lead your treatment.

4. If b) the Uro will refer you to BC cancer and an MO will lead your treatment.

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You are at the sorting and sifting stage where they are trying to figure out how bad you're cancer is and where they are going to route you for treatment.

[positive-thinking in reply to skiingfiend]

Well today is my husbands last day of chemo, yesterday was the last day seeing the GPO ( general practitioner in oncology ) . She said that there will be no scans at all till my husbands blood work shows a doubling or he has some serious problem that causes a scan to be done. Blood work moves to every 3 months after the summer and no one follows his case but our general doctor. There was no discussion on this, so that's our medical system now in a nut shell. His case is aggressive cancer that was already spread at diagnosis because his doctor did not send him to anyone when peeing was a huge issues for years! I have been waiting 2 years to see 2 different specialists. Our system is broken , there is not even anyone else to go to cause you need referrals for all of them. Sorry feeling very discouraged and alone right now. Scary medical system Canada has . No basic care, I'm so glad I can see everyone's else's care outside of Canada to see what should be happening . We were also told that the Nubeqa he is on is having issues getting registered to for his criteria . She wrote on his blood work form NED ? How can she write no evidence of disease when he only had a bone scan last October before he even started any treatment? So nothing much to stress about . Thanks again for all your help and knowledge .

[skiingfiend in reply to positive-thinking]

That's the model as I pointed out to you earlier, it doesn't matter if you are in Vancouver or Prince George. This is true in the US as well. Also, they are not going to schedule scans without a reason. That reason is always a real worsening condition. This is standard as well.

Self education is your primary tool now and learning when you need and how to go around your local providers as I pointed out earlier.

Compounding your problem is you live in a lightly populated remote area that can only support minimal service levels. So you don't have an easy option to seek alternative opinions. You are never going to get Mayo, or City of Hope, or Vancouver Tier 6 levels of service in the Yukon. This means you may have to travel.

If you're still concerned you have the right to seek a second opinion. Use the tools I gave you to identify the MO in Prince George - the nearest Tier 4 to you, and ask your GP Onc or your family doctor for a referral.

One thing I'm curious about - does Yukon have a deal with BC for health care services?

If you're willing to pay for diagnostics - Alaska may be an option.

Good luck and welcome to the journey.

[positive-thinking in reply to skiingfiend]

Everything in the Yukon is all connected to everything that B.C does. So yes we have our medical system connected to BC for healthcare. If we can not get something done here we are sent to B.C . Thanks

[j-o-h-n]

BTW As I've said this many times before............ Many men are babies regarding Illnesses and doctors. Women are the adults......... Keep up the good work there P-T....

Good Luck, Good Health and Good Humor.

j-o-h-n