just giving up.

dumbass

so i have been refused reconstruction. again. my ps tells me the only option for reconstruction is diep flap later, i have little body fat and a pigeon chest. i accept this till i meet other women who are going through this. they ask why i'm not having expanders, even oncologist asks this. i just figure it is the ps so i continue after mastectomy to see other ps's, they are all short and refuse me for expanders. i go see oncologist who says i was refused because i am crazy. so now i am supposed to start rads when i know full well there will never be reconstruction because of damage. i am struggling. why should i keep going. i have lymphedema, my arms are not right, i am really trying but the cording is horrible. i didn't know this so i continued to see ps's in hopes for something, the bills are piling up. why continue. even my hair is not coming back right, it is thin. is there anything that is wonderful?

123JustMe

Hi!
Please don't give up! I can feel your frustration but you never know what tomorrow will bring. I am sure other ladies will be by to share the frustrations they have felt and the solutions they have come up with. Please hang in there!

MusicLover

That is awful that they tell you that you are crazy. Maybe you can post where you are from and others who have had treatment in your area can help you. Or maybe you need to travel to see a really top notch PS, I hope someone will post that type of information for you.

In addition, have the PSs that you have seen give you an explanation as to why you cannot have expanders?

There is a post somewhere on here about MSK helping with LE, maybe that can help you.

Tomboy

They aren't even ALLOWED to make that judgement, whether you are crazy or not. Are you in the states? IT IS THE LAW that they must provide recon if you have had a mastectomy!!!! I am outraged on your behalf! You don't smoke, by any chance, do you? That is why until I quit, I cannot get a reduction of my other, non-perky breast. (I have gained weight since treatment, much of it in my good, much bigger boob. Can you tell us anything else?

BarredOwl

Hi

You are dealing with a lot, but you will get through it. Hopefully, you will get some more good ideas from others about the reconstruction, regroup and make a plan.

About your LE, have you been referred to a lymphedema therapist for an evaluation and treatment? There are also self-care techniques you can learn. If not, let us know and we'll reply with some useful links and information for you.

I also had cording on both sides. Big ones. My physical therapist said, "you're really good at making cords". At times I thought they would never go away, but they finally disappeared. They persisted for months, and then disappeared quite suddenly shortly after I regained full range of motion and stopped doing overhead stretches. I still do slow gentle overhead range of motion exercises, but not stretches per se.

In the months before the cords disappeared, I was encouraged this article, even though I knew it might take some time:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC272480...

I especially liked the statement in the first paragraph of the discussion section referring to a study of 139 patients, 57% who had cording, and all of which was gone at 1 year 😊:

"In the series reported by Lauridsen and colleagues, (5) axillary "strings" were present in 57% of 139 patients after breast cancer treatment at first follow-up, declining to 31% at the second follow-up, 15% at the third follow-up at 6 months and to 0% at 1 year."

BarredOwl

dumbass

sorry I haven't replied sooner. they say that they thought I would tear them out(expanders). I find this just ludicrous, I have a port in my chest that I HATE and its still there. I realize that I will need radiation but many have had it also with expanders. I am thin(i lost 40# in chemo) but i also have a pigeon chest so i don't think autologous flap will hide this problem. I requested to see a thoracic dr to fix chest anaomly but was told they won't do anything either by bs. ps's say I am not a good candidate for expanders. I have not smoked in 28 years and am very athletic, or at least was. I am having a hard time motivating, I have no smell from chemo so no desire to eat, so no desire, motivation to run the half of cheesecake that wouldn't be able to get past me off my ass. thank for the cording info, that gives me something. thank you for all you thoughts.

ksusan

If you do have a mental health issue, you may want to contact NAMI (National Alliance on Mental Illness) in your area. They ought to be able to help you advocate for your health needs with your providers.

BarredOwl

Hi

Been thinking about you. It sounds like you have consulted with more than one plastic surgeon, and each has indicated their view that you are not a suitable candidate for expanders for some reason. It is not very helpful for them to say you would tear them out. But it might possibly reflect a view that for some medical reason, you would find them extremely uncomfortable and so they do not recommend them. This might perhaps be because of your chest structure, and how the expanders would be oriented on your chest, maybe facing more outward toward the arms than the typical patient?? I have no clue, so that is pure conjecture on my part, and the only thing I can think of is to (a) contact a PS you spoke with previously and ask them to explain the medical reason why you are not a suitable candidate for expanders so you can understand it better; and/or (b) contact the offices of the PSs and request copies of the result of consultation and physician notes in case they noted the reason in your medical record.

BarredOwl

macb04

Hi there, I don't know if is a helpful thought, but having fat grafting helped a lot after having severe radiation fibrosis. My skin is also fragile. I also got 85 Hyperbaric Oxygen therapy treatments which helped my skin heal. Even Medicare pays for "soft tissues radionecrosis" like I got from rads with HBOT. I got a tissue expander in April and then this past Thurs the 6th of August I got an implant. The HBOT helps me heal from the surgeries. They can't say you are crazy and deny you your right under the law for reconstruction. I know that sometimes it feel like I am all alone and that I am loosing my mind. They probably said you are crazy because you are understandably .upset and they just are wusses and can't deal with emotion. Its not fair, its wrong that you have had all these setbacks, like so many of us, like me. To me it feels like a crime has been commited against me, all in the name of greed and profit. Someone wreaked my health, first with my mothers constant secondhandsmoke, and then the thousands and thousands of antibiotics, that my idiot Pediatrician gave me instead of explaining to my mother that she was slowly but surely destroying my health. There was a lot of profit there I am sure. Then I used birth control, didn't realize I was a ticking bomb from the cigarette smoke exposure and all the antibiotics. Then the whole cancer industry started making a huge profit off my "treatments "

Sorry to have gone on to my sh*i, but it probably applies to all of us in some way or another. What part of the country do you live in? Someone may be able to help you somehow someway.

Hugs to you.