Dismissed because your stage IV?

Anonymous

Dismissed because your stage IV?

KelQ

I am newly diagnosed with Stage IV. I read this article today and wondered if this really happens? Do people really dismiss your best interests because your stage IV and will die anyway? I don't think I'm in this boat, just food for thought and something to watch out for as my journey travels on...

https://advancedbreastcancer.net/living/finding-ri...

I am not sure if we are allowed to ask for physician recommendations on this site, but would sure be nice to have a thread where we could recommend Oncologists and surgeons who do care about us even though we are stage IV!

santabarbarian

I am not Stage IV, but I did consult with a wonderful oncologist who treats many Stage IV people. Putting his name in this thread: Dr Keith Block in Chicago (Skokie). He is an Integrative Oncologist. He has very good stats in his practice and a huge amount of knowledge of complimentary practices, supplements, etc. Many patients come to him when their MOs tell them, "there is nothing more we can give you" and he builds them back up to where they can be treated. He has a book and has authored quite a bit of info online.

Lauriesh

I have had this happen to me at Mayo. I was there to discuss targeted liver treatments after having success in shrinking my tumors with chemo. His suggestion was to join a drug trial that he was head of to “ help future generations “ and that I was not a candidate for liver treatments .He made it clear that I had little chance of survival. I told him I had 3 young kids that I had to be here to raise and could care less about future generations and left.

Well, I had ablation done at Univ of minn a month later in 2011 and I have been Ned since then. My kids are now 20, 19 and 16

I saw dr Eric Jensen, a liver specialist, at Univ of minn

DivineMrsM

Lauresh, don’t you want to go visit that idiot first doctor and tell him a thing or two?

Kel, sometimes women are dismissed by doctors simply because they are...women.

When I hear of stories like the one in this article, it makes me think some doctors’ professional knowledge is severely outdated. You hear of being on the “cutting edge of medicine”.....well, these kind of doctors definitely are not! Women are demanding more, learning to have more of a voice and to advocate for themselves, and wise are the doctors who step up their game and work with us so we can try to achieve longevity and quality of life dealing with this disease.

My story involves having to go to a doctor appointed by the state disability board so I could quality for disability. What a quack. After a bizarre afternoon in his office, he told me since I hadn’t had any progression of the disease in over 5 years, I probably just had arthritis. He very abruptly said, “Women with stage iv breast cancer only live 3 to 5 years.” He said it in such a way that meant women did not live one more day longer than that. He looked at me like there was no way I was outliving the statistic because I didn’t have bc.

Well, I was denied disability, but got a lawyer and won the appeal.

JFL

KelQ, I think some medical professionals write us off because they view us as just another statistic. However, there are just as many others who look at us as humans that could be their wife/sister/mother/daughter/friend, etc. I suspect many doctors have encountered a patient or particular life circumstance that made them look at things differently - someone who humanized the whole metastatic patient experience for them. Sometimes I find myself intentionally trying to look really good when I go to the doctor - to sort of shock them into a response of "This is not what I had in mind when I learned a woman with a liver full of tumors was my next patient". Once they view you as someone they can see in their life outside work, they seem to take a different approach. I would tell anyone to run for the hills if she encounters anyone who writes her off. It makes me so mad to hear stories about that.

Divine, wow, I can't believe the disability rep said you must have arthritis. It is so sad that people with such ignorant beliefs are making life altering decisions about whether we qualify for disability. You should have told him "You must not have been accepted into medical school".

gailmary

Not me but a friend was just diagnosed stage 4 and her doctor was in no hurry to tell her. Gotta take that vacation you know. Then 2 weeks after ct scan when friends daughter questioned the MO he said "well, she is 75 yrs old". Can you believe it??? Hers scan was to check for pneumonia.

I heard this story yesterday. Not only learning of friends recurrence also learned of another friend that went for scans for possible recurrence and also another friend with recurrence of melanoma to stage 3. Bad News day.

Gailmary

AllyBee

Struggling with this myself a bit at the moment. I'm currently NED and would like to have a mastectomy and reconstruction but I feel like my surgery team don't see the point. Basically I don't want to go through all this and get another primary tumor and I feel like it's affecting my mental health. I'm not a very forceful person by nature but taking my husband to my next appointment in May for back up. I'm in Australia so if I want it done through the public system my choice of Dr's is limited. I will look at a private surgeon but don't know if it's an option for me financially.

ABeautifulSunset

I had a radiologist at UCLA tell me he wouldn't radiate my ONE hipbone met because I was stage 4 and they didn't think it was worth it because I wasn't going to live long enough for it to be effective. (At least that was the interpretation I got). After a good cry, I went elsewhere. Meanwhile EIGHT years later.....still here!

Sunset

santabarbarian

Regarding reconstruction: be aware that surgery and specifically the pain of surgery CAN prompt metastatic activity. At least that is my understanding. It's why they are so careful about pain relief... Lidocaine, the right anesthesia, and NSAIDs are thought to be protective against this possible effect. I am sorry I do not recall the details but this was in an article I read before my surgery about what kinds of anesthesia are better or worse with respect to future metastases. It may not be relevant to your case, maybe only when jostling a tumor... but I would ask.

gailmary

Sunset, it is stories like yours that make me really appreciate my team. They told me I'd be in for more radiation to give me a tuneup as needed. What are those doctors in the business for?

Not just that, I hear some health care systems demand their doctors push for all the procedures we will allow.

Allybee, Are you likely to get another primary tumor in the breast? What makes you more likely to get one? Do you mean a local recurrence? I hear they are thinking its not even necessary to remove them and just proceed with your treatment plan. Pretty scary either way. But if you are stage 4 wouldn't it likely go to the bones or other organs first? When they found my bone met there was nothing in either breast. That shocked me! Did the drs say why they dont want to do the mastectomy?

Gailmary