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Another with USPC

cindy0519
Posts: 173
Joined: Nov 2015

I was diagnosed with IDC (Invasive Ductal Carcinoma) in May 2015.  I had a masectomy of the left breast with immediate tissue expander and Alloderm placement.  After many, many, many infections and other trials the tissue expander was removed in late August.  I began hormonal treatment with Tamoxifin in late July.  I saw my medical oncolgoist for a check up in mid Sept and she recommended that I be followed by a OBGYN instead of my primary care doctor since I was on Tamoxifin.   She gave me a referral to a OBGYN.  I had an appointment with the new doctor on the 24th of Sept.  I was due for a PAP so we decided to do that and a quick ultrasound to look at some spotting that I had developed within the past few weeks.  Up to this point there had been zero signs of bleeding or a period since I started taking Tamoxifin. 

When the OBGYN did the PAP she said, as she clipped it off, "Oh, you have a small polyp hanging from your cervix.  Don't worry I'm just taking it off" and she held it up in a small speciem dish.  My face tells a story and my panic certainly showed!  She immediately said "don't worry! These things are very rarely anything other than bengin.  We will send it to pathology "just in case" but don't even give it another thought."

Fast forward a few days, I get a call from her while at a conference in CA.  It is indeed cancer -high grade endometrial adenocarcinoma with necrosis and components consistent with serous (not on the path report but the pathologist that she spoke with hedged on whether serous cells were present).  Needless to say...a second cancer diagnosis in less than 4 months was incomprehensible. 

I had a radical hysterecotomy (Da Vinci) on Oct 9.  Everything was removed including 27 lymph nodes (pelvic and aeortic).  The final pathology confirmed the serous cell tumor (4.0cm) which had invaded the myometrial 17/21mm.  One of the pelvic lymph nodes was also found to be positive but all other areas were clear of invastion.  Final staging IIIC1, Grade 3. 

The current plan is a sandwiched treatment like many of you have undergone.  3 chemo rounds with Taxol/Carboplatin 21 days apart, followed by 25 external radiation treatments, and 3 additional chemo cycles.  I had my first chemo cycle last Wed.  Side effects are well controlled by meds given pre chemo and by prescription.  Days 3 & 4 were horrible with bone pain but it seems to have lessened in the last couple day.  I actually feel pretty good today (knocking on wood :) ). 

I meet with a radiology oncolgist the 4th of December to put together a plan for radiation.  I am also meeting with two other oncologist (one breast, one GYN) the 10th of Dec. to talk about treatment and get a second opinion.  It seems that much of the treatment for USPC is "on a wing and prayer" so to speak so meeting with another onocologist for a second opinion seems critical in my mind.   I'm also meeting with an interventional specialist to discuss and schedule meeting with a dietian, accupunturist, and massage therapist during treatment.

I work full time and just returned to work yesterday from my medical leave due to the hysterectomy.  I'm hoping to continue to work throughtout treatment. 

Anything I have overlooked or any pointers on getting through this???   I'm doing okay most days but going on 5 months of mutliple surgeries, treatments, and long periods of limited or no activity have taken their toll - phyically and mentally at times.  I'm ready to get back to life!!

 

pinky104
Posts: 574
Joined: Feb 2013

It sounds like you're being really thorough.  I tried the accupuncture and it didn't help me, but I've heard it does help many women.  I went through 6 rounds of carboplatin and taxol for my stage IVb (over 5 years ago).  Do you take any vitamins?  I've heard that Vitamin D helps protect you, and I've also heard that Vitamin E can predispose you to getting cancer (although the study of that is still ongoing).  I discontinued my Vitamin E when I heard about it.

I've had at least 6 cervical polyps over a span of probably 25 years.  They were all benign.  I also had an endometrial polyp that was benign, removed by D&C.  My final polyp in the endometrium 10 years after the first was malignant, where my OB/GYN thought it would also be benign. 

I'm sure a lot of women on this site would recommend turmeric.  I haven't taken any of that. 

Do you eat any processed meat (bacon, sausage, cold cuts, etc.)?  They have been shown to cause cancer.  Also, it's looking like red meat (beef and pork) may also be a contributor.  Gluten may also cause inflammation in the body which sets you up for cancer, from what I've heard. Potato chips are also bad, as are so many other foods.  You should google the "dirty dozen," a list of problem foods that changes from year to year. You'll find strawberries and other fruits on it.  I was told that you can't even wash the pesticides off of them.  Buy organic if you can. 

I can certainly see why you want to get back to your normal life.  I wish you luck in your treatments.   

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2714
Joined: Mar 2013

Wow - welcome and it sounds like you have the plan!  

Cindy0519, while everyone is different, I did have a chance to meet with a dietician who specializes in helping patients undergoing cancer treatments.  When it got to the radiation, the side effects had me terrified.  She recommended probiotics, which I already had been taking before this all started, and she showed me a study where 400 cervical cancer patients were involved.  Half that took probiotics had less "loose" stool and hospitalization for dehydration than women who did NOT take probiotics.  

As I looked at the slides, while graphic, it was definite evidence to me that it would be (and was) helpful.  

As for the lengthy time of all the treatment, and multiple surgeries for you, it does feel like you will never return to normal, but you will.  It takes a little longer than you think, remember - this was MAJOR surgery!  But you will do it.  Be kind to yourself and accept the rest as restorative.  

EZLiving66's picture
EZLiving66
Posts: 1400
Joined: Oct 2015

I had a totaly hysterectomy using the Da Vinci robot on September 30th and am going to have round 3 of 6 rounds of Taxotere/Carboplatin next week.  My doctor doesn't know yet if he'll recommend radiation yet but it's a possibility.  It sounds like getting a second opinion is a good idea with two different kinds of cancers going on.  

Take care,

Eldri

Donswife48
Posts: 326
Joined: Nov 2015

Hi Eldri, I had Da Vinci surgery on Nov 6th, and will just be starting chemo on Dec 10th.  You are so much further in your treatment than I am, I wish I were that far into treatment.  My doctor originally said only chemo for this cancer, but when I talked with him a couple of weeks ago, he said he wouldn't rule out radiation.  I'm probably more worried about the side effects of radiation for USPC than anything else. 

 

Cindy, two cancers, wow!  You are incredibly brave, and I wish you the very best on your newest treatment.  I hope that your surgeries have got all the cancer, and that there won't be any cells left after your current treatments end.

cindy0519
Posts: 173
Joined: Nov 2015

Thanks everyone!  I am a very anal accountant who must have a plan for everything.  I am finding however that cancer doesn't care what my plans are and isn't afraid of totally crushing them :)  So I'm working on having an overall plan but being flexible and going with the flow more day to day....some days I'm good at it ...other days I stink.

Tomorrow is chemo cycle two and then my appointment at another cancer treatment center on Thursday to get a second opinion on my current treatment plan.  I don't expect any earth shattering difference of opinion, especially since there really isn't a ton know about the "best" waay to treaat UPSC - but having someone else confirm that we are doing the best with what we have been dealt will give me some much need peace of mind.

I'm glad to have found all of you and am so impressed with your knowledge, determination, and strenght! Thank you for sharing your experiences! It is so very helpful.

Cindy

 

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi Cindy,

Just wanted to welcome you to the forum and wish you well with your next chemo, which you've probably had by now!

It never hurts to get a second opinion.....I did (UPSC stage 1) and my doctor recommended I do that. 

It gave me peace of mind (as much as I could get at that time) and I knew we were on the right treatment plan for me. 

Please let us know how your treatment goes!

PS You're so right about cancer not following anyone's plans, so we need to just evict it from our body and kick it to the curb where it belongs! 

Hang in there, dear sister!

Donswife48
Posts: 326
Joined: Nov 2015

We may be a bit of kindred spirits, I work for a CPA (However I'm not an accountant).  My job is to install the software, troubleshoot and process the tax returns on our computer system.  I'm the first one to get started on the new tax year, and the (litterly) last one to go home on deadline days because it's also my job to make sure all the returns are submitted to our dear IRS before midnight.  I already know I have many helpers this year, I might need everyone of them to make sure I don't mess up!  Good luck to us all.

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