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

@loribmt

Hi @olg1 I’m sorry this is so frustrating for you. I agree, life holds enough stress, especially when you have cancer or any other illness. We’ve tried to make Mayo Connect as easy as possible for everyone. Most of the members in this community forum have had cancer, seriously illnesses, surgery, autoimmune diseases, etc. So we are all very empathetic and want to help as much as we can.

You have already joined! You have an @name and are logged into our Connect site. The very fact that you’re in here talking to us, is all you need to be a member and interact with a conversation. ☺️

I think this is the group you were looking for. Is there a particular comment a member made that drew your interest? If so, look at that post again and where you see the REPLY button, just click on that and it will allow you to speak directly to the person in the conversation.

You may also notice that the under the title posting in the large box at top, there is a drop down menu that says Oldest to newest. Click on there to Newest and you’ll see the most current conversations. Does this help you? Keep on trying! You can see we’re here for you as @gingerw and @auntieoakley have mentioned.

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Yes, thank you.

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@olg1

How do you become a member to post messages.

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@olg1 You are a member already and you’re posting messages. You’re writing to us so that means we can see your messages.

Down at the bottom of this page where it says, Comment, just write what you want us to know about you or any questions you have and click the blue button that says Post Comment. Easy Peasy! ☺️

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In reply to @olg1 "Yes" + (show)

OLG, I'm sorry to hear that you are getting that annoying pop-up that asks you to join even after you've signed in. I will get the tech team to look into that. Are you using an Apple device like an iPhone or iPad by any chance?

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@gingerw

@olg1 Welcome to Mayo Clinic Connect. I am sorry you are having troubles navigating the site. Here is the breast cancer group, where you will find many different topics: https://connect.mayoclinic.org/group/breast-cancer/
One dealing with radiation treatments for breast cancer: https://connect.mayoclinic.org/discussion/number-of-radiation-treatments-for-whole-breast-cancer-radiation/?pg=1#comment-173011

I hope you will find information you need, and support as you travel this journey. This Connect community is an amazing one, and in case you haven't guessed, we are here for you no matter your health concern!

Here is a link to getting started here: https://connect.mayoclinic.org/get-started-on-connect/
Ginger

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Ihave a question about how much radiation I am getting. My cancer was a half inch triple negative grade 3 stage two invasive carcinoma. Only one lymph node was invaded within the breast,my margins were clear on the other lymph nodes and my pet scan was clear. Now they are giving me thirty days of radiation,25 to the whole breast 5 days targeted to where the cancer was taken out. 60000CGYs total. Is that over kill?

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@olg1

Ihave a question about how much radiation I am getting. My cancer was a half inch triple negative grade 3 stage two invasive carcinoma. Only one lymph node was invaded within the breast,my margins were clear on the other lymph nodes and my pet scan was clear. Now they are giving me thirty days of radiation,25 to the whole breast 5 days targeted to where the cancer was taken out. 60000CGYs total. Is that over kill?

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It is a pretty common amount of radiation. I had the same and another member I have been talking to had the same and one of my friends had the same. Even with smaller tumors than yours. But you certainly could ask your doctor.

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@loribmt

@olg1 You are a member already and you’re posting messages. You’re writing to us so that means we can see your messages.

Down at the bottom of this page where it says, Comment, just write what you want us to know about you or any questions you have and click the blue button that says Post Comment. Easy Peasy! ☺️

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I just received my 10the radiation treatment today, for the first time I felt a lot of pain like a flaming arrow going through the side of my breast. I had a rash last week that was itchy and they prescribed a cortisone cream. They told me I would not feel the beam, but I felt the burning pain and herd it . The radiologist the zap is common . I know the difference between a zap from nerve pain and inflammation and a burning sensation. Has anyone else felt that burning sensation . It really unnerved me. It didn’t feel right.

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@olg1

I just received my 10the radiation treatment today, for the first time I felt a lot of pain like a flaming arrow going through the side of my breast. I had a rash last week that was itchy and they prescribed a cortisone cream. They told me I would not feel the beam, but I felt the burning pain and herd it . The radiologist the zap is common . I know the difference between a zap from nerve pain and inflammation and a burning sensation. Has anyone else felt that burning sensation . It really unnerved me. It didn’t feel right.

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Hi @olg1 oh gosh, that sounds painful and frightening. I confess, my treatment didn’t involve radiation so I’m going to bring in my friend, @auntieoakley who might be able to help you understand what’s going on during your radiation treatments. I hope you don’t have that sensation again!

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@olg1

I just received my 10the radiation treatment today, for the first time I felt a lot of pain like a flaming arrow going through the side of my breast. I had a rash last week that was itchy and they prescribed a cortisone cream. They told me I would not feel the beam, but I felt the burning pain and herd it . The radiologist the zap is common . I know the difference between a zap from nerve pain and inflammation and a burning sensation. Has anyone else felt that burning sensation . It really unnerved me. It didn’t feel right.

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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.

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@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.

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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’

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@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’

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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.

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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.

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@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.

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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.

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