Breast cancer mets to peritoneal cavity only

[Becca65]

Wondering if there is anybody else out there like me? Ascites was my first symptom and the side effects of having ascites. So far it is contained there. Wondering also if anybody has had hipec here in the USA for breast cancer mets to peritoneal cavity? Even if it was considered palliative care. Desperately looking for somebody going through this particular mets situation.

[Becca65]

Anybody out there with ascites? For those of you that don’t know what this is - is when your peritoneal cavity fills with fluid to the point that it causes a lot of pain and discomfort as it moves your organs around, puts lots of pressure on and smushes them (technical term). It makes it hard for some of your organs to function. You have to get drained I’ve had to go once a week for up to 3 months at a time. It is like going from normal to 7-8 months pregnant once a week every week. It carries many of the same side effects, nausea, heartburn, vomiting, leaky bladder, loads of very painful bowel issues, painful kidneys from the pressure on them, it can push up into the pleural cavity and make breathing work and if you let it go to long actually put you in respiratory arrest, backaches along with hip because of the weight and it changing your posture, like when very pregnant it hard to sleep, pushes out on your ribs making them very sore. I go from wearing a size 8-10 to 16 -18 or more in 7 days and then back down and back up again. The most I have had drained at one time is 4-5 liters. There are people who have 10-20 liters when they are drained. I felt like I should share what ascites is as I have had to look up some of the terms involved in some of your mets.

[Becca65]

They are only the experts when it is being caused by liver or kidney failure so I’ve been told and yes was referred and he confirmed that. I have neither and none of my organs have mets.

[blms in reply to Becca65]

Sorry Becca, I misread your diagnosis/ not the same as mine.

Where are you being seen?

[Becca65 in reply to blms]

So wait are we the same or not?

[blms in reply to Becca65]

no

[Becca65]

There is almost nothing out there on Hipec for treatment of breast cancer mets. Heck there isn’t tons out there about Hipec in general. I have seen both of those sites previously but thank you so much for sharing.

[Becca65]

When where do I find this

[Becca65]

Thank you Sandra! You are very kind as well as helpful and knowledgeable.

[Becca65]

Just recently, my previous dr recommended the more permanent port. I wish somebody had mentioned in my prior round of ascites, I have to get mine drained more than 1x a week at this point.

[BeckyinMaine]

Hi, I’ve just been diagnosed with a these mets. I also have bone mets. So far I have not have Ascites. Are you on any chemo? I will start Xeloda or Taxol probably this week. I have been off chemo for about a month as Afinitor gave me pneumonia. Ibrance only worked for 7 months which was disappointing as I had very few side effects.

I too am interested in the HIPEC but just the chemo not the debunking. Check Memorial Sloan Kettering. I think it might be worth getting a 2nd opinion there.

Strength and healing to you

Becky

[Becca65 in reply to BeckyinMaine]

I am a Rebecca/Becky also. I am seeing a Roswell Cancer Center, Buffalo, NY - Dr. Skitzki (sp) next week. He does the cyto reduction/HIPEC Surgery. Although they don’t usually consider breast cancer patients he is considering me at this point because of the single location met. I will consider other hospitals/Drs if this one doesn’t work out. I am currently on Ibrance and Faslodex, it has reduced the ascites but not ended the build- up of fluid so far. You are lucky to not be experiencing ascites to this point. To me it is by far the worst part of my cancer and indeed life experiences to date. This includes original cancer, chemo (AC&T) and radiation, childbirth, pulmonary embolisms, being allergic to my unborn child’s fetus. With as fast as I fill so far up to every 3 days there is extremely little quality of life for me, should I not be able to clear up the ascites I do not know that I will continue fighting for life. I try not to be negative, but I am strictly talking about my personal experience. I was an extremely active busy person 51 year old woman prior to my cancers return in this form.

[KarenHale in reply to Becca65]

I believe one of the top Drs in this area Hipec is David Bartlett from UPMC Cancer Center in Pittsburgh. I have metastases in this area and also to the bone. They would not do the procedure on me because it’s breast cancer. But with what your experiencing I would try. so sorry that you have to go through this 🙏

[Becca65 in reply to KarenHale]

I am working on getting a list of all the hospitals/drs who will do HIPEC here in the USA. I am hoping to find at least a few who will think out of the box.

[BeckyinMaine in reply to Becca65]

Oh my, you should not be going through this at 51!! I’m 70 but in good health other than breast cancer. Please let me know how the Buffalo appointment goes. I am going to Dana Farber on Thursday for s second opinion and will ask abt HIPEC surgery. Based on my research, I don’t think they do it.

[Becca65 in reply to BeckyinMaine]

Dana Farber is near Boston correct. I don’t think anybody is old enough to have to deal with cancer.

[BeckyinMaine in reply to Becca65]

Yes, Dana Farber is in Boston and it's fourth on the list of the best cancer centers in the country. I will be starting a trial there in a couple of weeks: Xeloda possibly plus a oral version of Taxol or just Xeloda alone. The selection is random. The oncologists at Dana Farber and here in Maine recommended Xeloda as my next treatment. Evidently, so far, my peritoneal mets "not dramatic" so I have some time. Continued good luck with your efforts to find HIPEC surgery.

Becky

[KarenHale in reply to BeckyinMaine]

Your story sounds like mine. I have it in the stomach area and in the bones. I was on Ibrance and letrozole for a year and a half and it stopped working. I went on Afinitor and that did not work. I’m currently getting Abroxane and I’m on Xeloda. I just got done with my third round of the xeloda and my tumor markers are plummeting. Good luck with your treatment.

[BeckyinMaine in reply to KarenHale]

Thank you! It’s good to hear that the drugs are working. I’m going to Dana Farber on Thursday to get a second opinion.

[Becca65 in reply to BeckyinMaine]

How did your second opinion appt go?

[Becca65 in reply to KarenHale]

Good luck to you Karen!!

[Becca65 in reply to BeckyinMaine]

So I am scheduled for HIPEC surgery May 2, 2019. The Dr seemed very knowledgeable and pleasant. He welcomed any and all questions and encouraged me to be in contact with any other questions via email. I will not be having the cyto reduction with this first surgery, it is possible I may have at a later date depending on the outcome of this surgery. He doesn’t make his determination dependent on type of cancer as much if you have other mets and where they are, how often you need draining, your physical condition, age, other medical issues if you have them and what your quality of life is currently. The mortality rate for this surgery alone without the scraping is very low less than 5% and it stops the accumulation of ascites in about 70% of people regardless of type of cancer met it is. Again my only met is to my peritonuem and this was huge in him even deciding to see me. I pushed for over a year to get the referral and have had to continue to push. A lesson don’t give up keep pushing nobody truly cares about you staying alive except you

[BeckyinMaine in reply to Becca65]

Congratulations!! Your persistence paid off; may the surgery truly give you a new lease on life!

[Becca65 in reply to BeckyinMaine]

Thank you! I will let you know how it works for me. Prayers that each of us finds a reason for hope.

[Becca65]

HIPEC info not giving up hipectreatment.com/why-have...

[Becca65 in reply to Becca65]

Finding a location that even does procedure

hipectreatment.com/locate-dr/