Cramps - Had Everything Removed - Is this Normal?

gwynedd said:

I have cramps, too
I've been feeling something like menstrual cramping, too. Like y'all, I have nothing left to cramp. I see my gyn/onc next week, and I'm going to ask her about it. I'm stage 1 grade 1 endometrial adenocarcinoma, and things seem to be looking good, but the cramping kind of bothers me. I'm going to keep checking back to see if anyone else has any input about this situation.

Gwen

bonniep said:

Cramps - Not alone! Current Status of USPC
I am so sorry to hear you are all going through the same thing, but in a way, I'm glad I'm not alone out there. I will definitely let you know if I find out anything and would appreciate the same. I also want to thank you for letting me spill my heart out about what I’m going through. Just knowing we are all dealing with the same things and experiencing this disease from all stages, gives me a place to go to share with others who truly do understand. Maybe I haven’t experienced everything you have, but my memory bank is filled with information you have provided. I am about to put some of that archived information to task since I got news yesterday my USPS has now recurred.
The biopsy I had last week shows my USPS has recurred (1st recurrence since I was DX in April, 2010 with USPC). I intend to really have a heart-to-heart with my GYN/ONC when I see him at my appointment. Of course we’ll concentrate on the current news of recurrence, but the cramps that have nothing to do with where my recurrence is, does back up why my Dr. needs to always listen to me if I tell him something is wrong. In November when I told him about my cramps and he said it is normal to feel cramping and many women do experience them. His only explanation was that pelvic radiation affects everything in that area and could cause scaring and adhesions like HellieC said. This could last for months and even years. But for me, at that time, my pelvic CT, Paps and internal exam were clear - no visible scaring or adhesions. In other words, I was still NED. I didn't pursue the cramping issue anymore, but have really been hurting a lot lately, especially in my lower right side. In the back of my mind I know my doctor was unable to remove one of the malignant lymph nodes way down in that area because it was intertwined with bone, veins and nerves and was way too dangerous to remove. He said chemo and specifically targeted radiation in my pelvic area and a special ‘boost’ to that area would kill the cancer. The fact that it does seem to be getting worse does concern me and we need to talk again.
This recurrence was found because I was concerned with pain in my left shoulder, arm and neck (looked like protrusion of my jugular vein) and I just wanted my GYN/ONC to know. I had already gone to my Primary Care Dr and had an X-ray and ultrasound which showed nothing. I was given a steroid shot, put on anti-inflammatory and muscle relaxers and told to come back in two weeks if I wasn’t better. Well I did feel better until all my medication ran out. My GYN/ONC said what I was going through was not typical for the normal progression of USPC he’d seen, because of all the pain I was having, but decided to see me. (My question to you or anyone who reads this – Is there some kind of ‘normal’ progression or any specific places USPS does or does not go?) I do give my Dr credit for agreeing to see me. Normally, he tells me to go to my Primary Care Physician for all things unrelated to USPC and he’s been right so far. That’s why I did go to the PCP 1st. My GYN/ONC pushed and prodded around my whole neck and shoulder area and couldn't feel anything, except the soft, squishy, visible swelling in my neck. (Inflammation but no swollen or hard lymph nodes, etc.). He sent me immediately, same day, in fact, for a Head/Neck and Lung CT scan to make sure there wasn't anything 'lurking around deep under there' (his words). The CT scan confirmed there were a 4 x 3.5 cm mass in the Supraclavicular region of my neck, a small 1 cm spot on each of my upper lung lobes & one very small spot in my brain (a place where he said USPC never recurs). To me the CT scan read like a death sentence because it said words like ‘probable’ or ‘likely’ or ‘potential’ metastases due to my history of cancer. My Dr. still was not convinced this was recurrence of USPC, but more concerned it could be another cancer. Until the biopsy results were in, he couldn’t determine the course of treatment to follow. This has been a long month – Needle biopsy, wait on results, inconclusive biopsy results, delays due to Christmas/New Year’s Holidays, wait on schedule for surgery to cut out a piece of the mass and biopsy, wait on results, again. Finally, yesterday, I got an ‘unofficial’ DX, as there are two more ‘Stains’ that are being studied. Unofficially, it is recurrence of USPC. I should know officially today. The good thing is that I haven’t had Chemo since Nov. 2010 and my last radiation treatment was Jan. 2011. My Dr. says since I haven’t had anything in over a year and that I did respond so well with Taxol/Carboplatin, I should respond well this time, too. Do any of you recurrence friends find this to be true?
My Dr. is awesome and so far everything he has explained to me has occurred exactly as he said it would, except this new recurrence. He told me to stay off of the internet because the studies/statistics, etc. are not always based on current data. The studies involve so many types of people of all ages, sizes, lifestyles, etc and people from all walks of life. So many studies do not take into account all the current, up to date advancement in medical research, treatments, drugs and technology. Yes, my Drs education, experience and knowledge makes him the best person to make decisions about me, but frankly, I'm the authority of my body and I know if there is something different or new or strange going on. I'm not a hypochondriac and tolerate symptoms and pain well, if I know what it is. I just don't tolerate not knowing very well. In my ‘unprofessional’ opinion, my Dr. is wonderful, smart, knowledgeable and extremely sensitive to my concerns and needs as his patient, but he hasn’t encountered every possible progression of USPC recurrence in history. For him to say USPC does not metastasis to the brain - is that a true fact or just based on HIS knowledge and experience that he’s never seen it? Just for the record, I would like to know if any of you are aware of USPC mastitis to the brain. I think I asked that already. Also, every woman is different. Maybe, my experience will be a new chapter to add to his book of UPSC recurrence experiences.
Anyway, ladies, I just feel very strongly about this. Information is powerful and we must rely on our bodies to tell us when something is not right. We must stand strong and be honest and unafraid to confide in our Drs what is going on, no matter how big or small. If our Drs blow us off or do not address our issues just because it’s something not in their books of case studies, maybe it’s time to find another Dr. My Dr. didn’t necessarily think what I was experiencing pertained to USPC, but acted anyway and I am so grateful he did because this ended up being far worse than just shoulder and arm pain. We don’t need to be at the mercy of our Drs because we lack the medical knowledge, training and experience they have. This is our life and our only chance to help control our destiny. God is the ultimate, Supreme Being over our lives, but He made our bodies and He gave us a brain with the intelligence to speak boldly and unashamedly about what we physically and emotionally feel.
Thanks again for letting me vent – boy do I feel better!

Ro10 said:

Jan, I had a colposcopy
You are right it is like a biopsy being done, they have a special lighted instrument to get the biopsy. I think it has like a microscope on it to biopsy the suspicious area. I had one done after I had an abnormal PAP. That lead to my hysterectomy, and then my diagnosis of UPSC. They said the colposcopy might pinch a little bit!!!. I think it hurt a lot, but not for long. Some people were told to take 2 Motrin before the procedure, to help with the discomfort. Some had some spotting and cramping after the procedure, but I did not have any afterwards. Good luck with your procedure. Sorry you are having troubles navigating your healthcare system. In peace and caring.

HellieC said:

Adhesions?
I wonder if what you ladies are experiencing could be due to adhesions from the surgery? I, too, have pelvic pains which were checked out but scans were clear for cancer. Any sort of pelvic surgery, radiotherapy or even chemo can cause these adhesions to form. They are like thin bands (or sometimes sheets) of fibrous tissue which can form around organs or in cavities. My pain feels like my pelvis is "tight" in a vice or like the muscles/tendons just won't "give". It's OK when I wake up in the morning but gets progressively worse during the day. I take over the counter painkillers every day for it.
If your pain is crampy, it could be because the adhesions are forming around the bowel and it's stopping the bowel from being as mobile as it should be. Just a thought.
Kindest wishes
Helen