One’s story and what it might say

Posted by stuckonu @stuckonu, Sep 22, 2019

Can someone tell me how each discussion group gets to be a discussion subject? As a nubie I’m still trying to understand the process and the best way to navigate the connect site. So far I can say THANK YOU 1 for the site 2 for all of the volunteers, mentors, and participants willing to help with hyper-linked answers to my questions. If there is a 3 and a 4 I’m more than willing to say them. But those first two are huge helps. That said I noticed that on an occasion or two I followed the link and discovered great info and answers but I wonder if it might not be better to just answer the question instead of leading me a much bigger lesson than is necessary to answer the question. I feel badly if this discourages others from answering with hyper-links.
But back to my question: who gets to say: this or these ARE THE MAIN HEADINGS?
This is posted in the CANCER discussion group because the story that I would like to share fits here best of all.
If you’ve read any of my posts you’ve noticed that I struggle writing short stories because it seems important to me to share details of the process. There’s no doubt that it’s easy to lose track of the so called process and “ digress “. It may be happening here and now. So I’m going to slow down and pay attention to my question and the words and questions that find their way into my post. A few days go I received a few replies admitting that my post excited them but that they needed time to consider what they wanted to say. I was excited and looking forward to hearing what they though and wanted to say. So far I’ve heard nothing and no I think that there will not be a reply.
I think and perhaps many of us think similarly that “ no answer “ is in fact it’s own answer that requires a broader understanding of what is being said and why.

I’ve circled back in a manner of speaking still wondering about my question: “ how are questions chosen to be on the major list? Looking at “ CANCER “ subjects I wonder which one might best fit my story?
I think this one might be best.

In short a friend of mine had their cancer disappear completely after something else happened to her
( she contracted another disease and I thought that some aspects of the second disease played a part of sending the cancer into remission and at some point she was cancer free )

If there is a connection that resulted in her cancer disappearing how might it ever be known? Who might wonder as I did if there enough reason to investigate further?

I have wondered for many years if one disease/illness/condition/malady can be used against another? This question itself is received strangely when I ask a variety of doctors. A few doctors just laugh at my question without even answering or perhaps asking me “ what do you have in mind?” Or:
“ that’s an interesting question, what makes you ask?”
It’s been on my mind so long that I’ve now started asking a new question to inquire about this interest. I now ask: “ do you ever think about discovering something new in your field of medicine or perhaps in a field that you are interested in but don’t practice or focus on?”
One doctor said” it’s interesting that you ask me that now because just this month I asked many questions of my school and of a few other schools. It’s discouraging hearing the answers to my questions

Interested in more discussions like this? Go to the Cancer Support Group.

@auntieoakley

You should mention it to your radiation tech and ask to speak to your doctor, but to get you through the night you can put your cream or even better if you have it, put some aloe Vera gel in the refrigerator. I will say the sounds are not something I encountered but the burning sensation did start about 8 to 10 treatments in and the burning was pretty severe. They gave me aquaphor but it didn’t really help just made me greasy. The aloe would take the sting out for a while. A nurse recommended it when the burn really got going. I don’t know if the aloe or the fact that it was refrigerated was the ticket, but I have kept aloe gel in the fridge every since for burns.

Jump to this post

The burn is not on the out side, I feel the burn on the inside when the beam comes through on the side of my left breast. I told the radiation therapist , I told the doctor . He said it was from inflammation and the nerves. I felt those nerv zaps after surgery,this doesn’

REPLY
@olg1

The burn is not on the out side, I feel the burn on the inside when the beam comes through on the side of my left breast. I told the radiation therapist , I told the doctor . He said it was from inflammation and the nerves. I felt those nerv zaps after surgery,this doesn’

Jump to this post

The burn is not on the outside,I feel the burn on the inside of the breast when the beam comes through to my left breast. I told the radiation therapist.didn’t feel it anywhere else but near the incision.I told the doctor,he said it was inflammation from the nerves.I felt those nerve zaps after surgery, this feels different,the burning sensation is on the inside,my skin looks fine with the cortisone cream that gave. I am worried they are burning part of my heart or lungs. I am very sensitive to me education. Cancer treatment is barberick there has to be a better way.

REPLY

I recently learned about a doctor in the late 1800's, I believe that noticed people that caught certain diseases would have their cancer spontaneously disappear. They theorize that it was some kind of immune reaction and, I believe, is the beginnings of today's immunotherapy. I wonder why doctors don't tell you that. That doctor back then would infect cancer patients, on purpose. Some of them had their cancer go away. Some of them died of the infectious diseases. Anyway, I would think this is known by doctors -- unless I am misinformed.

REPLY
@olg1

The burn is not on the outside,I feel the burn on the inside of the breast when the beam comes through to my left breast. I told the radiation therapist.didn’t feel it anywhere else but near the incision.I told the doctor,he said it was inflammation from the nerves.I felt those nerve zaps after surgery, this feels different,the burning sensation is on the inside,my skin looks fine with the cortisone cream that gave. I am worried they are burning part of my heart or lungs. I am very sensitive to me education. Cancer treatment is barberick there has to be a better way.

Jump to this post

Olg, yes cancer treatments can be really rough. I'm sorry to hear that the radiation is causing a painful burning sensation inside your left breast near the incision.

Because of the location of the breast, radiation to the breast can cause nerve, lung and/or heart damage. I think @robin0613 and @billie3 may have experiences to share about this.

The important thing is that you continue to report your symptoms to the radiation therapist and oncologist. They should monitor you closely to ensure that radiation is delivered in a way that destroys the cancer cells and spares health cells as much as possible.

REPLY
@olg1

The burn is not on the outside,I feel the burn on the inside of the breast when the beam comes through to my left breast. I told the radiation therapist.didn’t feel it anywhere else but near the incision.I told the doctor,he said it was inflammation from the nerves.I felt those nerve zaps after surgery, this feels different,the burning sensation is on the inside,my skin looks fine with the cortisone cream that gave. I am worried they are burning part of my heart or lungs. I am very sensitive to me education. Cancer treatment is barberick there has to be a better way.

Jump to this post

I am sorry I misunderstood the problem. Please advocate for yourself with the radiation oncologist, Colleen is right there is a risk there and only your doctor and radiation specialist can determine if this is the case or if you are feeling the radiation in the tissue. Please let me know how you are doing. I hope some other folks who have dealt with radiation issues will chime in here.

REPLY

I was recently diagnosed with breast cancer and will be starting chemotherapy soon. Has anyone used the cooling cap to help reduce the loss of hair? Has anyone had good results from using it? Is it worth the cost?

REPLY
@jdh65

I was recently diagnosed with breast cancer and will be starting chemotherapy soon. Has anyone used the cooling cap to help reduce the loss of hair? Has anyone had good results from using it? Is it worth the cost?

Jump to this post

This did not exist when I was first diagnosed and have since been pretty used to being bald now and again, but I am searching to see if I can find any references to it from the breast cancer pages. I know I have seen them and heard about them, are they really expensive?

REPLY
@auntieoakley

This did not exist when I was first diagnosed and have since been pretty used to being bald now and again, but I am searching to see if I can find any references to it from the breast cancer pages. I know I have seen them and heard about them, are they really expensive?

Jump to this post

@mylife I found an older post where you referred to the cryotherapy caps, I have never seen these and don’t know about results. Did you use one of these? Did you have good results?

REPLY
@auntieoakley

This did not exist when I was first diagnosed and have since been pretty used to being bald now and again, but I am searching to see if I can find any references to it from the breast cancer pages. I know I have seen them and heard about them, are they really expensive?

Jump to this post

I was told that insurance does not cover it, but have not checked with them directly. I was told they are about $2,500, which seems to be an extremely high expense if it may or may not help. I did search under hair loss and saw that someone mentioned going to the inspire.com website for cryotherapy and they mentioned that you can purchase or rent them. Not sure.

REPLY
@jdh65

I was told that insurance does not cover it, but have not checked with them directly. I was told they are about $2,500, which seems to be an extremely high expense if it may or may not help. I did search under hair loss and saw that someone mentioned going to the inspire.com website for cryotherapy and they mentioned that you can purchase or rent them. Not sure.

Jump to this post

Ouch, when already facing financial toxicity from cancer, that just hurts. I can’t really find much information on if the work, but here is this tidbit.
https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/hair-loss/cold-caps.html

REPLY
Please sign in or register to post a reply.