Posted on: Jul 24, 2020 11:50AM - edited Jul 24, 2020 11:52AM by KARW41
KARW41 wrote:
I apologize in advance if this is a very basic question but am curious about people's experience in light of what I'm going through.
I had extensive DCIS, a lumpectomy in April and now a bilateral mastectomy in July.
This seems weird to me but I can notice different types and gradations of fatigue.
Before any surgery, I had a sort of “dragging me down," kind of fatigue, that had been with me for the last year or a bit more, when I first had pain in the right breast that had the extensive DCIS.
Question- does anyone know if the internal cell division of intra-duct cancer cells in growth of DCIS takes away from the energy that normal cells use and also from our overall energy level????
A reason I ask is- I now have a different feeling of post-surgery fatigue, that doesn't constantly drag me down anymore, but instead, that old “dragging," chronic fatigue is gone and now I have more intermittent and “end of day" fatigue.
I am leaving my job, just doing grad school full time as an older adult, until I find a job that doesn't also require night work as well as day work.
I'm on leave without pay.
I'm trying to rest etc but not doing a good job of resting but I am curious about this because the earlier “dragging constantly" fatigue is gone.
I don't know if it could have been stress but I'm facing more stress now than before, so I don't think that's it.....
What it weirdly feels like is that the accelerated DCIS cellular division caused some type of dragging chronic fatigue.
I had higher grade comedo necrosis DCIS so I don’t know if that mattered.
I had unusual and sharp pain in that breast off and on for more than a year (even got a second opinion but they said it was likely nothing wrong- they were clearly mistaken).
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Jul 24, 2020 01:17PM MinusTwo wrote:
Karw41 - Have you had regular blood tests? Some of those number might be a clue. Maybe thyroid? Maybe your diet needs adjustment to get more energy? Or vitamins?
Jul 24, 2020 01:29PM KARW41 wrote:
Hello, thank you. The blood work was all normal. I take a lot of supplements. No vitamin deficiencies detected in blood work. I am going to try Googling this to see but so far, I don’t immediately see anything on it.
Jul 24, 2020 02:14PM DATNY wrote:
Did you ever noticed that your bilurubin level.is sligthly above limit?
Jul 24, 2020 02:28PM KARW41 wrote:
Well, actually, at one point, yes, but I do not think I have it anymore. Last blood work was normal. Do you know what that means?
Jul 24, 2020 03:00PM MountainMia wrote:
Before I was diagnosed in Feb 2020, I was very tired for at least several weeks. It was more than just winter blahs. I was just really tired. And yes, it was completely different from the tiredness after surgery or the fatigue after chemo or radiation.
Jul 24, 2020 03:13PM KARW41 wrote:
Thank you, MountainMia, that sounds similar to what I felt. It was just a different, dragging fatigue to me. That fatigue is now gone. I am just theorizing it could have been that the cells were rapidly dividing in there, stealing my strength and energy. I'm 50 years old, but hiked and ran etc. but I could tell something was wearing on me. I am hoping the post-surgery fatigue clears up eventually. Thank you for answering. It helps to validate the hunch that I have.
Aug 9, 2020 12:32PM DATNY wrote:
If only bilirubin is slightly higher from time to time, while all other liver enzymes are perfectly normal you may have Gilbert syndrome. There is a genetic test that can be done to prove it. Many people with Gilbert don't even know thyy have it because it does not give them terrible symptoms. For other is a debilitating condition, it gives fatigue, brain fog, and abdominal symptoms such as bloating.
Aug 10, 2020 06:21AM Rah2464 wrote:
KARW41 I had intense fatigue for 6 months prior to diagnosis and it was indeed for me different than any other fatigue I had felt. It was one of the reasons I was so persistent to pursue getting diagnosed. That along with some "heaviness" in my left breast. Luckily I had a BS who listed and ran that MRI. I was originally diagnosed with DCIS but upon surgery I upgraded to IDC.
I do experience different types of fatigue now, some medicine related, some old age stuff.
Aug 10, 2020 10:08AM KARW41 wrote:
DATNY: I asked a doctor about this before, with the bilirubin, I think. I will try asking again if it shows up elevated again. Thank you.
RAH2464: Thank you and I am sorry you had that intense fatigue. That sounds a lot like what happened to me. I had actual burning pain in the right breast that had extensive but non-invasive cancer (9 cm+ worth). I think this goes to show that listening to what our bodies are telling us is wise.
I got two opinions in 2018 and they did NOT believe anything was wrong but then in 2019, it showed up on mammography.
After my bilateral mastectomy, I wrote an email to the breast surgeon who had said in 2018 further screening at that time was not needed.
I let her know that the burning pain was actually something, in case that helps any other woman she sees.
I have different fatigue now, from surgery but am taking vitamins and supplements as I remember to, and that seems to help a bit.
I hope your fatigue eases up over time. I am reading your summary and that is a lot of surgery. I am not sure how you do all of that. I could barely tolerate the bilateral mastectomy without reconstruction.
My Mom went through reconstruction, a couple of times.
I just did not have it in me to handle it. Sending positive karma to you on the fatigue.
Aug 11, 2020 05:50AM Rah2464 wrote:
Karw41 - thank you for your lovely karma ! Sending some positives right back to you and blessings. I am so glad you also listened to what was happening in your body and pushed to be diagnosed. I am very impressed that you took the time to send a letter to your breast surgeon in order to educate. You will probably never know how many people will be impacted by that effort.
Aug 11, 2020 08:21AM - edited Aug 11, 2020 08:26AM by everythingwillbefine
karw41,
I am 48 and just had mastectomy to remove left breast which found extensive DCIS 8cm. Last year ultrasound d was still fine this year MRI shows extensive MRI
I had sharp pain occassionaly in my left breast and itchy around my nipple a year or two before the diagnosis. I googled and found some article said pain was not related to cancer so I dismissed it now I know I should not.
One thing I did notice is my white blood cell number dropped to below normal a year before my diagnosis. Mine was 2.8 and normal is above 3. Mine used to be around 6 prior years so my pcp has me re check a month later and it did went back up but only stayed around a little over 3. And it was the same right before the diagnosis. I had consulted hematologist and my pcp as that time I was diagnosed ALH so I was concerned that was related but both told me I am fine this is no relation to cancer but now after DCIS diagnosis I am wondering
I also did not have good relationship with my husband and think that might contribute the disease.
I now try to improve the relationship and also plan to start exercise routine after I recover
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