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Newbie questions and work after diagnosis and during treatment?

MSLMSMU's picture
MSLMSMU
Posts: 2
Joined: Jun 2016

Hi.  My is Michele.  I'm 56, single,  live alone,  no kids or family closer than 3000 miles.    I was diagnosed with primary peritoneal cancer 3/11/16. I had surgery within a week - full hysterectomy, removal of fatty tissue layer and appendix.  Lots of fluid removed from abdomen and lungs.  Spread to Lungs,  diaphragm and lymph nodes.  Started chemo the next week - 6 treatments 3 weeks apart.  I have my final chemo in 2 weeks.  My initial CA125 was 1800, after two treatments 600, after 3 treatments 375 and now after 4 is back up to 451. Neither of my doctors are great at giving info or even answering direct questions.  My chemo doctor made it seem like things were really going so well,  which until my surgery doctor said even 300 was still very high and indicated alot of remaining cancer.  My chemo doctor said he had no plans to do any scans after my chemo was over because it really wouldn't show anything.  That didn't sound right,  so i asked the surgeon and he said he would put in for a PET scan after.  I've asked both what happens after Chemo and how long before they can start another round since the numbers are high and neither had any kind of answer.  The chemo doctor said we'll know from monitoring you.   Not even a could be this or this or best case/worst case.  I'm so frustrated.  

Anyway,  as my title suggests,  i would like to know of you guys,  how many are working or have been working since diagnosis and thru treatment.  I've been off since i had surgery.  Work for me would be a 11+ hour day due to a minimum 3 hours commuting.  My return to work date as of right now is 8/1, two weeks after my last chemo.  I am looking into going back part time,  but the way it works with state disability pay being non taxable i may make less working than being on disability.  I don't know about 5 weeks from now,  but based on today there is no way i could manage an hour 11 hour day 5 days a week.  I also don't have any sick leave left.  

Any thoughts on anything I've written will be greatly appreciated.  

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 My dear Michele ~

 Okay Michele, I missed seeing your second entry, so allow me to answer you here as well.  I’m writing with a history of Peritoneal Carcinomatosis and Ovarian Cancer Stage IV.  I don’t know how much research you’ve been able to do on “Primary Peritoneal Cancer”.  It is a rare cancer, and helpful sights are almost as scarce as “hen’s teeth.”  That being said, if you’re not from the Southern part of the United States, you might not know that this is a colloquial expression—hens don’t have teeth!  But I’ve listed several sights below my name that are both enlightening and sometimes frightening at the same time.  To be able to make the best decisions, we have to be as informed as possible.  It is evident by your letter that your oncologist isn’t very forthcoming with helpful information.  So since I’m not a doctor, only a Stage IV cancer patient, you will want to consult with some caring physician that is willing to help you find out more about your diagnosis, treatment and prognosis.  I’ve given you a few links to help you in that regard. 

 Since you asked if anyone had thoughts on anything you have written, here goes!  And in the tradition of “Fools rush in where angels fear to tread”, may I start by saying, “I’m glad your oncologist is NOT MY ONCOLOGIST.  How does he know how effective the chemo treatments have been if he isn’t going to do a follow-up scan?  Can you change oncologists?  What would it hurt?  This one isn’t thorough enough for my liking.  You can see by my other answer to you, that I’ve had at least 11 CTs since my initial diagnosis, and have needed every one of them. 

 So am I to understand that the surgeon will order a PET scan for you after completion of your last chemo?  Usually a follow-up CT scan is done ROUTINELY in order to access the extent of effectiveness.  If your oncologist doesn’t order one, he will certainly not know if tumors have been reduced, or grown larger, or perhaps new ones have cropped up.  That’s precisely the purpose of the CT scan.  Good grief—it’s not like HE is paying for them! 

 That’s good because the PET will show active cancer activity.  May I suggest you ask for a copy of the actual disc and the completed report, because you may want to seek another oncologist with which you can communicate more effectively? 

 You’ve indicated that your oncologist nor your surgeon offer much information, nor do they ask direct questions.  Well, I would say that the surgeon’s work is usually limited to the “operating” end of the spectrum, while the oncologist is the one charged with keeping a watch on you for as long as you have cancer.  So I think you would be wise to check out other oncologists in your area.  You didn’t mention what drugs you were on, but usually Carboplatin is prescribed with another companion drug as well.  As for chemo drugs, there are some patients that are platin-resistant while others are platin-sensitive.  So sometimes drugs will be changed to something that hopefully will prove to be more effective in killing some of the tumors and slowing its progression.

 Has the oncologist mentioned any “clinical trials” that might be open for which you qualify?  And would there be any conveniently located to you?  Just wondering? 

 In my case, the Carboplatin/Paclitaxel (Taxol) has worked, but it may be that your drugs should be changed.  However, I would be surprised if this oncologist wants to do much.  How is he going to monitor you if he isn’t going to do a CT scan?  Usually the CA-125 count will continue to go down even a bit lower after the last chemo treatment.  My oncologist listens more to me and my “complaints” than just the CA125 count alone.  My count has never been extremely high. 

 As for counts, anything less than 35 can be considered “normal”. My CA-125 count was down to 10 on 12-17-15.  Now it is back up to 252 on June 2, 2016.  And I just had another one yesterday.  I’m sure it will be higher because the CT scan that I had on June 2, 2016 indicated I had Pleural effusion and a slight enlargement of existing cancerous nodes. 

 In times past, even as my count rises, my oncologist and I discuss it, and if I’m not having any specific recurring pain, we both decide to just “watch it.”  After all, I was Stage IV with a Peritoneal Carcinomatosis diagnosis to begin with, even before it was discovered 3 weeks later to also be in my ovaries.

 Prior to my Cytoreductive Surgery @ University of Pittsburgh Medical Center on July 1, 2013, I had neo-adjuvant chemotherapy (means before) then surgery.    The chemo reduced the size of my tumors enough that an operation could be performed.  In that surgery, my ovaries, fallopian tubes, gallbladder, spleen, omentum was removed as well as sections of my intestines.  This surgery was performed in order to have a “pre-emptive” strike against the advance of the cancer.  These were called “non-essential” organs to which the cancer could eventually spread.  Now granted I can’t do without my Liver or Lungs, and they are places to which the cancer can spread. There has never been a time that I was cancer free.

 That said, with the conditions you describe, is not your diagnosis Primary Peritoneal Cancer with metastasis to the Lungs?  Now as for cancer patients who are Stage IV, curative surgery isn’t the goal, but rather curtailment of further spread, or long periods of “progression free survival” (PFS) as I understand it.  So that is why I want to stay in a “holding pattern as long as possible, because with each subsequent “treatment”, my quality of life will not be as good.  This is just to let you know my own situation.  Doctors didn’t bother to quibble over “which came first, the chicken or the egg”, as far as the Peritoneal and Ovarian cancers were concerned.  All that mattered was that it was definitely Stage IV.  And since both are treated with similar drugs, that being primarily Carboplatin and Taxol, this was the route I took.

 So your oncologist should certainly be “leveling with you” as a best/worst case scenario.  However, it appears he must think it’s not necessary.  You should not be “kept in the dark.”  Sure, you’re frustrated—rightfully so!    

 Now since I know that other Stage IV cancers qualify for disability compensation, I don’t see why you would not as well.  Isn’t the criteria something to the effect that one cannot ever be able to return to a cancer-free normal lifestyle, and that their physical condition is not conducive to continued employment?  I’ve not checked into it, but I would if I were you.  Believe me, I know how you feel.  You’re only 3 months out from surgery, and chemo is anything but a “pepper upper!”  I remain in a state of fatigue even though I am still a high-energy kind of person.  However, I can’t walk very far without tiring out, and ride in a mobile cart if I go grocery shopping, or to one of the big warehouses like Costco.  So I know you’re not a bundle of energy, and if I were your doctor, I would not expect you to be pulling an 11-hour a day shift.  For months afterward, when I road in an auto, I felt every bump in the road.  I found that riding with a pillow pressed against my stomach helped ease it, but it was extremely painful to be jostled around. 

 I’m not certain of the type of incision you had, but mine was from the sternum to the pubic area, then I developed a massive infection.  The incision broke open, and I was on a “wound vac” for months afterward, and it took about 8 months for it to close up completely.  I was in the hospital for 42 days. 

 As for the disability decision, your quality of life should be criteria #1.  Michele, with lung metastasis, you will not be symptom free if I understand your diagnosis.  I agree with your surgeon that 300 still indicates the presence of cancer.  And with a Stage IV diagnosis, I will never be cancer free, but I want to have the best quality of life I can.  Close communication and understanding between my oncologist and me is vital. 

 Another thing to consider in reference to applying for disability?  What would you do if you had an emergency situation that required time off from work, or even hospitalization?  And what if further chemo treatments were prescribed?  How would that fit into your work schedule?  Seems that would be problematic—agreed?

 If you have no more sick leave, and you don’t feel like going back to full-time employment, and I think I know how you’re feeling about now, then it seems like submitting a disability application would be the right path to take.  If I were in your shoes, that would be the choice I WOULD MOST LIKELY MAKE.  And I would make it now.  Now understand I’m not a doctor, but only speaking as from one Peritoneal Cancer patient with metastasis to another one. 

 It is not good that you don’t have some family close by.  I’m sorry to hear that.  The least you can do is have a caring and sensitive doctor with whom you can communicate closely and have all your questions answered.

 Perhaps my comments will at least let you know your frustration is justified, and I hope that you will have a “breather” between chemo treatments, because there could well be more in the future.  Sorry I don’t have a magic fix, just a sympathetic ear. 

 Michele, with a Stage IV diagnosis that includes metastasis to the Lungs and lymph nodes, there is to my knowledge, no chemotherapy that will prove to be 100% therapeutic so that you can return to your normal lifestyle and work schedule and be totally cancer free.  That seems to be one of the criteria for eligibility for disability payments with cancer patients.  At least that is true in my case.  Of course, miracles do happen, but we have to make good choices in case we aren’t blessed to have one.  I consider it a miracle that I am still alive 3 years after my surgery.  And I’m thankful for every good day the Lord gives me. 

 Now once again, you’ve asked for our thoughts and these are my thoughts.  I’m comparing your diagnosis to my diagnosis.  I won’t be surprised to find that eventually it may well spread to my lungs, but it chose the ovaries first.  But I’ll cross that bridge when I get there.  And I always have to say, that as a Christian, I have the same sentiments as David, the Psalmist who expressed himself so eloquently in Psalm 139.  In effect, David said, there’s no place that I can go that YOU (meaning the Lord) are not already there.  Day and night, dark and light, height and depth, are all alike to You.  You even saw me when I was being “knit together” in my mother’s womb, and in Your Book, all the days of my life were written when as yet THERE WERE NONE OF THEM.  And I draw consolation and comfort in knowing that despite what medical problems I might have as time goes on, I will not die one day sooner or live one day longer, than my allotted time on this earth, and I know He loves me and He has given me peace in the midst of my cancer.  So I hope this letter isn’t too depressing, but it is intended to help you know steps to take that will benefit you most.

 With love, Loretta ~ (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) diagnosed November 2012

Helpful references for PrimaryPeritoneal Cancer

 1.  http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/

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2.   https://clinicaltrials.gov/ct2/results?term=primary+peritoneal+cancer&recr=Open

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 3.  http://www.medgadget.com/2016/06/peritoneal-cancer-clinical-trials-market-research-report-reviews-key-trends-size-growth-shares-and-forecast-research-report-2016.html

 “…Major key players in Peritoneal Cancer Clinical Trials Review, H1, 2016 are

 – F. Hoffmann-La Roche Ltd.– AstraZeneca Plc---– Sanofi---– Eli Lilly and Company---– GlaxoSmithKline Plc---– AbbVie Inc.---– Novartis AG---– Merck & Co., Inc.---– Bayer AG---– Amgen Inc…”

 Michele~ Now it appears that several companies are conducting clinical trials relative to Peritoneal Cancer, but this site seems to want us to purchase some kind of report.  That I don’t intend to do, yet it does indicate that there are trials being conducted in several places, and with drugs produced by these different companies.

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4.   http://www.macmillan.org.uk/cancerinformation/cancertypes/primaryperitoneal/primaryperitonealcancer.aspx

Michele, I have great difficulty finding specific information on primary peritoneal cancer.  This site is as good as any, but other links below will reference it as well.

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 5.  http://www.vitals.com/locations/oncologists

 You might be able to find your oncologist on this site, and see what kind of reviews and training he has.  Since I don’t need to know where you live just type in his name, and be sure of the correct spelling. 

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 8.  https://www.healthgrades.com/specialty-directory

 Here’s another site that helps grade physicians.

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 7.  http://health.usnews.com/top-doctors/articles/2011/07/26/how-to-find-the-right-doctor

 Just in case you decide to look elsewhere. 

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 8.  http://www.lifescript.com/doctor-directory/condition/p-primary-peritoneal-carcinoma.aspx?

 Doctors who treat or diagnose Primary Peritoneal Carcinoma -  Select a state

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  9.  http://www.disability-benefits-help.org/disabling-conditions/cancer-and-social-security-disability

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 1o.  https://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm

 “…E. When do we need longitudinal evidence?

 1. Cancer with distant metastases. We generally do not need longitudinal evidence for cancer that has metastasized beyond the regional lymph nodes because this cancer usually meets the requirements of a listing. Exceptions are for cancer with distant metastases that we expect to respond to anticancer therapy. For these exceptions, we usually need a longitudinal record of 3 months after therapy starts to determine whether the therapy achieved its intended effect, and whether this effect is likely to persist.

 2. Other cancers. When there are no distant metastases, many of the listings require that we consider your response to initial anticancer therapy; that is, the initial planned treatment regimen. This therapy may consist of a single modality or a combination of modalities; that is, multimodal therapy (see 13.00I4).

 3 . Types of Treatment

a. Whenever the initial planned therapy is a single modality, enough time must pass to allow a determination about whether the therapy will achieve its intended effect. If the treatment fails, the failure often happens within 6 months after the treatment starts, and there will often be a change in the treatment regimen.

 b. Whenever the initial planned therapy is multimodal, we usually cannot make a determination about the effectiveness of the therapy until we can determine the effects of all the planned modalities. In some cases, we may need to defer adjudication until we can assess the effectiveness of therapy. However, we do not need to defer adjudication to determine whether the therapy will achieve its intended effect if we can make a fully favorable determination or decision based on the length and effects of therapy, or the residuals of the cancer or therapy (see 13.00G)…”

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 11.  http://www.cancertreatment.net/articles/gastrointestinal-cancer/peritoneal-cancer-survival-rate

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12.  http://www.primaryperitonealcancer.org/

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13.  https://www.ucsfhealth.org/conditions/peritoneal_cancer/

 “…Peritoneal Cancer

 Peritoneal cancer is a rare cancer that develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum. The peritoneum is made of epithelial cells. By producing a lubricating fluid, the peritoneum helps the organs to move smoothly inside the abdomen.

 Peritoneal cancer looks and behaves like ovarian cancer, but the ovaries are minimally involved. Women who develop ovarian cancer after having had their ovaries previously removed likely have peritoneal cancer.

 The surface of the ovaries also is made from epithelial cells. Therefore, peritoneal cancer and the most common type of ovarian cancer, called epithelial cancer, produce some of the same symptoms and are often treated in the same way. In addition, women who are at an increased risk of developing ovarian cancer, particularly due to the BRCA1 and BRCA2 genetic mutations, also are at increased risk for peritoneum cancer…”

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 14.  http://www.webmd.com/cancer/peritoneal-cancer-prognosis-symptoms-treatments

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