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Normal to feel so weak after lap robotic hysterectomy?

zsazsa1
Posts: 122
Joined: Oct 2018

I had a robotic laparascopic hysterectomy with laparascopic inspection for visible metastases about ten days ago.  No mets found (and CT of chest, abdomen, and pelvis before surgery also showed no mets).  The tumor is mixed serous/clear cell, and was graded 1a.  One sentinal node had isolated tumor cells only, the other was clear.

I realize now that I had had sympotms for about a year.  A year ago I developed new clear vaginal spotting at age 56, but GYN didn't think it was anything.  She repeatedly said to watch for blood - and it took a year of symptoms before I developed blood.  I literally only had blood the night before the biopsy!  About a week before surgery, I suddenly began to feel very tired, no appetite.  I lost over 10 lbs.  So I was very surprised to hear that the tumor was only 1a, since I seemed to be having systemic symptoms. - and these have NOT gone away after surgery.

I'm now about ten days postop, getting ready for chemo.  Plan is 6 rounds of Carbo/Taxol, plus vag brachytherapy, but I'm trying to get into Sloan Kettering for a second opinion. 

The problem is that I still feel so weak.  I'm recovering well from the surgery, but I have no appetite, and I feel very weak and tired.  I have various abdominal and pelvic and low back aches and pains, but I'm hoping that is all due to having been pumped up with air for the inspection, and the hysterectomy.  But I'm afraid that it's because I DO already have mets, that they just didn't find on CT and inspection, and that I'm really a IV, instead of a 1a.

Is it normal to feel so weak ten days out from lap hysterectomy?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

zsazsa1, please remember, robotic or not, you just went through major abdominal surgery.  Recovery takes time, and I remember not having an appetite, and I had to force myself because it was an important part of recovery.  Be kind to yourself - it does take time. 

I can't tell, but are you working with a gynecologic oncolgist? It sounds like you are in NYC, since you mentioned MSK, and if get a 2nd opinion there is an excellent institution that will build you a plan that you will work.  

I think we all remember how overwhelming it all is, but take a breath.  Try to eat as that is important to recovery, rest is too.

CheeseQueen57's picture
CheeseQueen57
Posts: 715
Joined: Feb 2016

I also tried to get in to Sloan for a second opinion. My oncologist from Fox Chase even called up there. They told her they are only taking the most serious or rare cases since they are overwhelmed. But your serous and clear might be your ticket. Where do you live?

Northwoodsgirl
Posts: 478
Joined: Oct 2009

Zsazsa1, First I am sorry you have cancer. I am glad you found this forum. I agree with CheeseQueen and NoTimeForCancer. 

In some cases it is normal to have a lack of appetite and feel exhausted. You have been through major surgery and have endured quite a life altering diagnosis but there is good news. I had an open surgical hysterectomy and had a lack of appetite too. 

You are not alone in what you are experiencing.

You might want to tell your oncologist or the nurse practitioner that you are worried about your lack of appetite. You can speak to a dietician who can help you with food selections to get as much protein as possible to help you heal.

Fatigue could be related to anxiety or situational depression. Your oncology nurse or doctor can also help you with the emotional affects of dealing with uterine cancer. Please remember that many of us have had the same experiences and there are options/solutions if you talk to your care team. 

You don’t have to suffer. 

((Hug))

Lori 

 

Armywife's picture
Armywife
Posts: 158
Joined: Feb 2018

The lack of appetite prior to surgery could have been many things, including apprehension, whether you realized it or not. The mental energy it takes to process a cancer diagnosis is enormous. Post surgery, I lost 14 pounds - and gained 15 with chemo, unlike many folks.  We are all different.  I agree with everyone above - you've just had major surgery.  It's hard to realize the extent of it when you just have the tiny external incisions, but my surgeon reminded me that there were a lot more stitches inside than out!  If your body is telling you to rest, be kind to it and rest!  You're going to be just fine.  I did get a second opinion for clarity and peace of mind, but the treatment plan was the same regardless - my hospital staged me at IIIA, grade 1 and my second opinion staged me at IVB, grade 2.  Still had the same 6 chemos and the same followup.  

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

and I am sorry for what you are going through. Clear discharge should have been a yellow to red flag for your Dr.
I agree with all the ladies who answered.

Feeling exhausted is very common. Lack of appetite, while I did not have it, it could be just your internal turmoil of emotions.

You would benefit from a second opinion about your pathology report, but it is reassuring the all the tests are negative.
So I assume that the Dr already explained to you about the meaning of isolated tumor cells in the sentinel node even though you are Stage 1A. How about your Pelvic wash and Lymphovascular space invasion? Were they clear?
I would ask your Dr also about a mild dose of anxiety pill so you do not get overwhelmed.
Thinking of you my dear.
Keep in touch

Denise66
Posts: 44
Joined: Aug 2018

I did not have an appetite after surgery for 8 weeks.  Also, I'm now 10 weeks post op and finally getting some of my energy back.  

My cousin had stage 1a clear cell.  She did very well.  She never had any issues after her chemo and radiation.  You will do well.  Sending you positive thoughts. 

 

 

 

zsazsa1
Posts: 122
Joined: Oct 2018

Thank you for all the responses.  I'm already feeling more appetite.  My gyn-onc (and yes, I'm working with a gyn onc surgeon and an oncologist who works with her and does a lot of gyn onc) didn't seem worried at all about the fatigue and loss of appetite.  Oncologist told me to STOP trying to calorie-pack, said that many people actually gain weight on chemo, and since I'm overall about 15% overweight, she wouldn't mind if after all the treatment, I were to maintain a weight about 20 lbs less than where I am now.  I'm going to Hartford Hospital.

They're recommending 6 cycles of carboplatin/taxol, plus vag brachytherapy.  I have a lot of questions, about herceptin, metformin, whole pelvic irradiation vs chemo.  If I really am a 1a, then the risk of recurrence is lower, but I feel so crappy that I'm very suspicious that there are mets that they didn't find.  From what I have read, the isolated tumor cells in the sentinal node don't necessarily mean a higher risk of recurrence - hard to believe.  But my Ca-125 was about 35, and from what I've read, that is associated with a higher risk of recurrence.  And of course the clear cell and serous pathology are much higher risk.

I would have to delay chemo to go to MSKCC for a consult, and I'm pretty sure they're going to recommend the same treatment.  I am going to see someone at Yale at the end of the week, mostly to see if I can be tested for Her2/neu and be included in a herceptin trial.  But I don't think that 1a qualifies.

I'm pretty shocked that after an entire YEAR of clear discharge, it's only a 1a, but if it's true, that's great.  But I have a lot of trouble believing it.  Lymphatic and pelvic wash and visual inspection and chest/abd/pelvic CT were all negative.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

I still think your prognosis is very good. With your Lymphatic and pelvic wash, CT SCAN and visual inspection all negative. I also read an article about the isolated cells and like you mentioned, it is almost irrelevant to prognosis. 
Keep us posted :)

 

Armywife's picture
Armywife
Posts: 158
Joined: Feb 2018

I've heard various discussion that this cancer is slow getting started, so maybe it's not so shocking that it took a year to get you to notice it.  And my going for a second opinion to MD Anderson delayed my starting chemo here at home by 11 days, but it was worth it to have all of us on the same page.  I did have LVI and a positive pelvic wash, and still it didn't affect (as far as we can tell) their getting away from the chemo by delaying.  Hope you will find a solution comfortable to you.  We are here for you.

 

zsazsa1
Posts: 122
Joined: Oct 2018

Interesting to say it's slow growing.  What happened with me was that I began with scant clear spotting late summer 2017, was told it was nothing, told to watch for blood.  It continued, slowly increasing, and then perhaps in late spring/early summer the clear discharge increased.  I didn't have actual blood until late summer, was diagnosed in September.  In any event, I've decided to go ahead with the chemo and vaginal radiation.  Getting port in a couple of days, hope to start chemo next week (as if anyone "hopes" to start chemo!)

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I didn't really have any symptoms until maybe a month or so before I was diagonised so I don't know how fast or slow mine grew (I might be grade 2, but not sure yet), and I have a huge tumor in my pelvis. After a crazy 2 week heavy period that left me super tired and weak so I decided to start with an appointment with my primary doctor and get his take. Never got to that appointment because that week I got septis and had fluid in my abdomen and ended up in the ER for days. That sure sped up the scans etc. I was mostly better from the septis and they removed the fluid before I started chemo thankfully. I am about to start my 3rd chemo this week and if not for ever so slight numbness in my finger and toes I wouldn't even have known I was/am sick,

Armywife's picture
Armywife
Posts: 158
Joined: Feb 2018

LadyMox, are you icing your hands and feet during infusions?  My care team didn't tell me about it, but I read about it here, and bought simple cold packs at Target.  I developed severe numbness and tingling (neuropathy) on the third day after my first chemo.  It was so acute I couldn't walk.  My chemo regimen was changed, and I started using those icepacks with the second chemo - I have ZERO numbness and tingling.  It's worth a try!

 

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I heard about icing my fingers and toes but I can't imagine the freezing in the 5 hour process and the hospital is already always so cold. I do take a vitimian B complex, fish oil, and lots of glutamine, along with foot massages from my hubby. For now by time the 3 weeks is up it's almost nothing.

Armywife's picture
Armywife
Posts: 158
Joined: Feb 2018

My chemo nurse gave me a warm blanket, and it was so cozy. My gyn/onc warned me that the neuropathy is cumulative, so I'm doubly grateful it didn't happen.  I also had to switch to taxotere from paclitaxel because of how severe the neuropathy was the first time, as well as landing in the ER with two crazy heart arrhythmias from either the taxol, the steroids, or too much glutamine.

 

zsazsa1
Posts: 122
Joined: Oct 2018

Icing hands and feet to decrease penetration of the chemo to the extremities sounds like a great idea!  I will discuss it with my oncologist when I see her on Friday for informed consent.

Armywife's picture
Armywife
Posts: 158
Joined: Feb 2018

My oncologist didn't have any proof that it works, but she was delighted for me to try it and my chemo nurse was all for it. Those chemo nurses know a lot!

SF73
Posts: 207
Joined: Oct 2017

No one mentioned it on the first infusion and I did experience some burning sensation that week (especially when I exercised) In the following infusions I always iced my hands and feet. I am almost always cold so I understand the hesitation. My nurses also gave my warm blankets. It is definitely worth spending a few hours a bit uncomfortable if it means it can keep away a condition that may last for the rest of our lives.

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