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New Member Struggling a bit....

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Hello.

I am from Portland Dorset UK. My name is Michelle. I am 52.

I was diagnosed 6 weeks ago with a 6cm tumor on my left kidney, found by accident during a routine test for something else.

I had the kidney removed 2 weeks ago. Not as bad as I thought it would be. I had good care and came home after 5 days.

My pathology results are Grade 1/2 Stage 3a with clear margins. They Adrenal Gland and Lymph were clear but I had a small spread into the venal vien which is why they said 3a. No further treatment at this time with 6 monthly follow ups. I asked my prognosis and the doctor said that they comment more on that as to how well i do with my six monthly checks etc.

I would welcome any thoughts/advice/help to keep healthy/positive etc.

Thank you. Michelle :)

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Sorry I posted twice! I forgot to say I have Renal Cell Cancer. Michelle :)

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

hi michelle i am sorry you had to join us here but as i always say there are a FABULOUS bunch of people here.  we are or have been in the same boat as you and trust me we know how you are feeling.   we are all here for you and you will find this is a really nice place to check in and have a chat, vent, discuss, cry, laugh and every other emotion that you can think of and yes there will be many!!!

eims x

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

i agree with Eims! You have  come to the right place.  

Since I am in a similar situation, I don't have as much wisdom/knowledge as others on this board.  I can tell you that you aren't alone, and you are among friends.   Stay positive!  It sounds as though you caught it early, which is great!

 

Jen

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

HAH!  I posted to the other thread  See what I mean Michelle?  They are already coming out to welcome you here!

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Michelle, 

There is no two ways about it, having a cancer diagnosis is very scary. I am glad that the operation is behind you now though, it was dealt with so quickly too.The aftermath does leave you shocked and feeling pretty low, with a high level of fatigue, mental and physical. It takes quite a few weeks to heal and there are times when you feel you will never regain your energy, but you will.

You have probably been advised to drink plenty of water, filtered if possible. Also cut sugar out of your diet. I have pretty much cut meat out of mine especially red meat. I eat chicken from time to time and more fish, I love vegetables so eating plenty of veg is not a problem. I do have a sweet tooth though, but surprisingly I've  not had too much of a problem cutting back on cakes and biscuits. I just have a small treat now and then.

I think that it is important to absorb yourself in some form of relaxation. I have regular massages which removes all the stress, I especially love aromatherapy treatments. I meditate every day and go swimming or walking. I find all of that's a good fit for me, but I do think finding something to help you relax is important, it helps  you mentally as well as physically.

Try not to focus on having had cancer, just don't let your mind dwell there. None of us knows what the future has in store, worrying everyday about the what if's in life is time wasted, and honestly, we don't need the stress:-) 

Take care

 

Djinnie x

anmazon's picture
anmazon
Posts: 129
Joined: Jun 2013

Welcome to the club nobody wants to join.  I was diagnosed May 20 and had a radical nephrectomy June 5.  Still kind of new here myself.

 

You won't find a better, more supportive group than this one.  With humor and compassion, they have got me out of my state of sheer terror.

I'm sorry you had to join us, but happy to have you here.

 

Warm regards.

 

Annie

 

anmazon's picture
anmazon
Posts: 129
Joined: Jun 2013

Welcome to the club nobody wants to join.  I was diagnosed May 20 and had a radical nephrectomy June 5.  Still kind of new here myself.

 

You won't find a better, more supportive group than this one.  With humor and compassion, they have got me out of my state of sheer terror.

I'm sorry you had to join us, but happy to have you here.

 

Warm regards.

 

Annie

 

anmazon's picture
anmazon
Posts: 129
Joined: Jun 2013

Oops!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Michelle.. as you just found out.. no need to have multiple posts on the same subject..  you will get more replies soon I bet...  So, all I can add to my last reply to you... is...  Woiw..!  Another young Chickie in the group..!  :)  Again, sorry you have to be here.. but if you keep a good sense of humor all will be fine..!

Oh yes, the follow ups are key.. no one can 100% predict the future just heal up and enjoy life.. If something shows up down the road, deal with it then... nothing to do now but smile...

Ron :)

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Welcome, Michelle.   Someone else will have to teach you the secret handshake.  My fingers are still in knots from trying to learn it!

what kind of RCC did your report say you had?  I'm sorry you've had to join here, but you won't find a better group of people.  I'm still new here myself.  Surgery April 22 of this year.  Hello, my name is Tillie and I'm a Chromophobe-y!

T1ffanyz's picture
T1ffanyz
Posts: 41
Joined: Aug 2013

I too just had surgery, partial nephrectomy.  Having a hard time myself.  I've gotten help from a ton of awesome people.  Welcome :) 

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

For the welcome Laughing 

I am not sure which type of rcc it is yet. I was told all the results on the phone and have an app coming through for post op check so will ask more then.

I have had a bit of a struggle walking..is this normal? I mean I can walk but it is slow and a bit sore and makes me tired. I did do more yesterday tho' managed to walk slowly up a small high street and buy some stuff!! That felt good Laughing Hubby standing by scared to even think about complaining lol .... Ha! I bought a dress a cardigan a ton of nail polish some books allsorts of stuff .. desperate times and all that... lol

I dont know how i feel really .. i am usually out going and i think fairly amusing and good fun but this has hit me hard in lots of ways. I am worried but I know I have to be positive. I had a amusing mix of responces to my results from the inlaws phoning and talking to me as if I was allready on my way out .. dare to dream! My buisness partner burst into tears ffs wtf? But my kids and husband and a friend were very positive. Truth is no one knows do they. Ah and I have had two friends avoid me which saddened me deeply.

Anyways.....I hope to be around for awhile and make friends here.

Michelle x

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Michelle, 

We can all identify with how you are feeling right now Michelle, you probably feel like you have gone ten rounds wth a lawn mower. Your insides have been cut and shifted around, they will take time to settle down. Walking is not easy at first, I remember struggling to walk especially up hill, just persevere, gradually increasing the distance and pace, you will get there. Trying to keep in motion helps improve recovery, and also prevents adhesions. Exhaustion hits you like a brick wall, so sleeping for long periods is not unusual at this stage, just be patient with yourself.

Feeling low or even depressed is very normal, as your body heals these feeling will lift. For me, it felt like a form of post traumatic shock, there is a feeling of loss and the experience is difficult to comprehend. You will get back to your old self though, I promise you, in a couple of months these symptoms will become harder to remember.

It is interesting watching how people react when you mention cancer. I think that some people almost have an irrational fear of contagion.  Others may feel inadequate and don't know how to respond, so it is easier to avoid you. This is the time when you can sort the wheat from the chaff though. Right now, when you feel vunerable having a support system is vital, you are lucky to have a strong family by your side. You will come through this, stay positive!

You sound like you have the right idea, there is nothing like a bit of clothes shopping to give you a boost. Manicure and a good book, sounds good to me:-)

Take care

 

Djinnie x

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Now they'll get a chance to learn what a survivor is and what they CAN do!

I understand completely. My neighbors both look at me regularly like "Why are you still here?"  They have been doing my yard work since the surgery (not that I'm complaining mind) because they are sure I'm going to fall over any minute. It shocks them when I look stronger every day.  Cool

I suppose I'll have to own up and start doing my own yardwork here soon, but I'm not rushing it! Laughing

Take your time. Indulge yourself a bit! What you've been through already is enough justification to soak up some pampering.

People will think what they will. 

Stay vigilant, stay hydrated, and live your life!  Its too good to spend worrying about other people's discomfort!

Michael

T1ffanyz's picture
T1ffanyz
Posts: 41
Joined: Aug 2013

I visited my job all I did was walk across the courtyard and I was done.  Some days I get farther than others but its difficult.  It makes 1 month yesterday from my surgery and I'm still not myself.  If I've learned one thing since I've joined is that we all heal at different rates and to be patient.  Take care

 

tiff

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I take them once in a while.  I still slam into that wall regularly.

 

I am alive
Posts: 229
Joined: Jul 2012

I heartily endorse it! Good instincts.

sbaron
Posts: 4
Joined: Aug 2013

Dear Miashelle1,

Hi.  I was diagnosed with kidney cancer in 2011 at age 53.  The malignant tumor on my left kidney was over 9cm.  Both the tumor and my left kidney were removed, the area around the margins was clear.  I credit early detection (well, not so early), great doctors at Columbia Presbyterian Hospital, and access to good healthcare for making my recovery successful thus far.  I feel great.  I did experience some weight gain and my body, FINALLY, after almost three years of recovery seems to be in my control again.  I do watch what I eat: low amounts of complex proteins, no more wine every night, less processed sugars, more fruits and vegetables.  I'm better about excercise, too (although, I will despise it to my grave).  I check my blood pressure frequently (have a home device).  And all is good.

My advice is to keep up with your check-ups and bloodwork. Follow the dietary guidelines, and live your life normally.  As my husband says, "it ain't a problem, till it's a problem." Worrying is not good for you, or your family.  Although, gifts of jewelry can help ;->

Best to you,

Sophie

 

adman's picture
adman
Posts: 268
Joined: Jul 2012

....welcome to the 'club' that everyone wishes they weren't a member of :)

I had a redical neph July 2012. I had a 5.0cm tumor [ Stage 1/ Grade 1 ] they thought was a 6cm prior to surgery. Mine was also found accidently b/c of another test. 

Bloating was the biggest issue for about a month. Surprisingly, not as much pain as I thought there would be. I didn't take ANY pain meds after the first day 1/2 in the hospital, and went home on the 3rd day.

I've had (2) follow up scans, xrays and bloodwork done since, with my 3rd coming up end of this month.

Wishing you continued healing and great health.

~M

danbren2's picture
danbren2
Posts: 199
Joined: May 2013

Hi Michelle,

     My name is Brenda and I live in Leonardtown Maryland.  I am 55 years old and was diagnosed with RCC in April of 2011.  I had left kidney removed in August 2011 and  then in March of 2013 my lower right lung removed.  I am happy to say that my scans in June were clear, and I don't go back until October.  I am taking things one day at a time right now  and I can say I am very lucky to have a great family and friends with a fantastic support system.  This is the place I come to just talk sometimes, they understand the fear of the scans and are the best support anywhere!

     I went back to full time work in April, have drastically changed my eating habits, and I am even walking on the tread mill about 3 nights a week, about 1 to 2 miles.  Make life happy, live, laugh, and love!

                                                                                                    Sending prayers and wishing you good health!

                                                                                                     Brenda 

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

2 weeks post op is like a blink of the eye. Most feel pretty good after 6 weeks. 3 months before feeling like they can return to full activity. IT can be a year before your body adjusts to the changes. Be thankful you will be given the time now. Stay current with all your follow ups. Many of us have done some Dr. searching to find the right people to follow our care. Well with the effort with what is at stake. Good luck. Fox.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

Miascelle,

A little scary being told you have Kidney Cancer a.k.a Renal Cell Carcinoma and that little initiation to start things with (surgery). We all went through it and it is a little hard to explain it to others, Remamber when CANCER was something someone else had. And no one really heard of Kidney Cancer because that was one of the rare ones. Many on this board have came on with a lot more baggage  (size of tumor) than you and are doing realitively well. You are borderline Stage 1 at 6 cm and very well may get thru this with no further treatmant. My tumor was a little smaller (4.2 cm) and I am 11 years without anything further, Fay across the street started her RCC with Lung mete and does not remenber the size of her little sucker. She is   82 and started her journey at 64. Our dogs like to bark and growl  at each other.  Maybe they are having friendly disagreements about the health of their friends and know a lot more about this then we do.

 

Icemantoo

 

 

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

for all the advice and welcomes...it is apreciated. I actually went to work today for three hours. just sat there tho'..needed a change of walls. I still keep having mini melt downs etc and just wish non of this had happened! I am positive when I am not having a meltdown. Trying to be up beat here Smile I am bordering on self pity too I think. lol oh dear i am trying to think of something constructive to say.

I had a holiday booked in India for November and I have cancelled it. Stupid? I know I just dont feel comfortable going that far away from home at the moment. Some advice I had was to go some be careful so I made the decision myself. We were lucky enough to go last year. We opted instead for a week nearer home end of september. but I am not confident and I know I should be. I just wish I could see a way forward...I hope this forum will help me with that. One minite I feel positive .. the next I think whats the point .. I am hoping this will pass.

I am drinking plenty of water watching what I eat and any other advice on nutrition would be good. Did anyone replace sugar in tea/coffee? If so what for?

Thanks....Michelle x Laughing

 

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Oh and by the way....I have all these wierd lumps in my side ?? Is that normal ? I have bumps where there was non before lol It all sort of feels like it is in the wrong place! And it moves as in bloats up and down...It has gone down a bit but it is strangeLaughing!

Michelle x

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

If you consider the logistics of accessing the kidney, cutting through muscle and fatty tissue. All of this has to be pushed to one side, and after the op everything has to resettle and reconnect. So the lumps and bumps and pouches are all normal I'm afraid, lol!..They will go in time:-)

Djinnie x

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

But they keep moving about .... lol

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

I understand everything you are saying.  Been there, done that (didn't like it one bit!) still doing it, and have ordered the damned tshirt!

I am taking a very low dose antidepressant, because I seem to get the "what's the use" feelings, too.  I have the odd, moveable lumps and bumps, too....although in my case I think it's probably just the fat rearranging itself. Lol. Everything you are feeling, I have been assured is perfectly normal....whatever " normal" is.  You just take it one day at a time.  I have scheduled and we ARE going to go on a trip to Jamaica at the end of December....come hell or high waters.  Our daughter has picked that for her destination wedding, and not even wild horses, let alone KC is going to keep me from making that trip.  Cool  I won't be able to do any diving, but I sure as heck can snorkel! And do water aerobic exercises...and read....and walk on the beach....and enjoy life.

oh, and I have given up soft drinks and ugar.  I use a sweetener made from Monk fruit... Called Nectresse, by the makers of Splenda. Nothing artificial in it!

NanoSecond's picture
NanoSecond
Posts: 589
Joined: Oct 2012

Careful. You might want to consider the points raised in this article:

http://www.draxe.com/is-nectresse-safe-the-new-natural-sweetener-by-splenda/

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

 

Well, poop!  I don't use it very often and only in my tea.  I will not use anything with aspartame, sucralose, or sucrose in it.  I thought I was doing good to find a sweetener without any of that in it.  Back to the drawing board.....or learn to like unsweet iced tea.  GAAAKKKK! 

Yell

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

LOL thanks for trying. Maybe with no sugar but yuk! Money Mouthx

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Beats me why anyone chooses to ruin the taste of tea or coffee by putting  sweetener of any kind into them! 

Much like going salt free (or close to it) it's not that difficult to retrain yourself to finding you can happily do without all the sweetening that the food industy has rammed down our throats for the past few decades, with the catastrophic consequences that we're now witnessing.

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Michelle, 

Everything you are feeling is perfectly natural, you have suffered a major body blow. This whole sequence of events, the diagnosis, major op and the and anesthetic leave you feeling pretty depressed. You will get through this, just give yourself time. I often found myself breaking down in tears, and struggled with feelings of depression. I think most people go through that, it does pass.

I have cut out red meat, and also cut back on sugar. I use the brown raw Stevia liquid instead of sugar. I use it on cereals and in coffee it tastes great, I don't like sweet tea so haven't tried that. The raw stevia is a healthy alternative, it is also said to lower blood pressure, and uric acid. I buy mine from a herbalist in the UK, a small bottle lasts for ages.

Djinnie x

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Thank you. That makes me feel a bit better. I guess thats it ..the shock I suppose. I am not actually depressed I dont think just amazed at my crap luck. And, a bit shocked guess the depression will kick in :) I do feel determined and a bit angry if im honest!

Do you know what really makes me mad...at the begining of this six weeks ago I paid to go private to get a faster app with a Urologist. I walked in the door armed with husband and two grown up kids and his first words to me where 'dont worry this will not kill you' now i am not daft I have seen cancer. I paid for all the scans myself to get them faster and my tumour was 6 cm not the original 5cm that 'was not going to kill me' ... Then after surgery the two surgeons came to see me and assured me that they got it all blah blah and that they felt my pathology was mearly a formality. The the pathology that was all of a sudden the stage 3a .. I mean do they fill you with all this false hope. It is just pointless and no wonder you end up pissed off with them. I am not even trying to sound negative here it is the truth of what I have been told and it makes me angry. Why dont they just say nothing until they know something! Anyways...I guess I am at the anger stage Laughing

I have cut out red meat i need to cut out fizzy drinks aka soda but I find i dont fancy them now. I dont seem to fancy sweets either .. i just need to hunt for something good and natural to sweeten my coffee. I am in the UK...Do you have the web address where you but raw stevia? Thanks.

Michelle x

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Oh and someone said I looked 'weak' today .. for gods sake I wanted to kill em Innocent Wouldnt anyone look weak after having a kidney removed etc etc... sigh lol ...im laughing at myself now Laughing

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

I know how dealing with all of this stuff can make you angry. In my case after having kidney cancer in 2003, I was being regularly scanned. Unfortunately the new tumour was missed over a 3 year period, on three separate scans. It was picked up last December after an MRI. I was livid with the doctors, I think the anger got me through the first few months. I am over it now, but I don't trust anyone anymore, I try to check everything.

You sound like a strong and determined woman to me, that's what will get you past this. The most important thing for us to do now, is to eat healthily. You seem to have made a good start there already. I have started juicing as well, lots of greens and asparagus, looks awful but it makes me feel good.

I buy the Stevia from a medical herbalist in Hampshire, www.godshaer.co.uk. He is very helpful and can be contacted by phone most days. He sells two types of Stevia, i prefer the flavor of the brown, I have been using it for years and could never go back to sugar now.

All the best

 

Djinnie x

 

 

 

 

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Michelle, Just a thought! If you order the small bottle it comes as a dispenser, but with the larger bottle you will need to ask Alan to send a dispenser with it.

 

Djinnie x

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

I have neighbors that I dearly love, who would do anything in the world for me or each other, as I would for them,  but each day one or the other will come over and sit and look at me until I feel like I must have a smudge of something on my face or something hanging out of my nose! Lol   Then, they will say, in a funereal tone, " how are you feeling today?"  I say " pretty good!" And they will give me that sad look again, and say "really? Do you REALLY feel okay?"  I feel like i need to do some back flips or cartwheels or something to convince them I'm actually going to live for awhile! I mean, my God! Do I really look like I am DYING?  I thought I was looking purty damned good!  I've lost 8 pounds, my hair looks great, my complexion is clear, I don't have any cavities in my teeth, and my fingernails look gorgeous!!!  I know what you mean about being in the angry stage....I'm pretty much there still.  I am literally salivating at the idea of confronting my surgeon who read my path report and still didn't tell me the truth! But, I think a little anger is good!  It keeps us in the "Hell NO, this isn't going to be what does me in!"  mode.  Which makes us more careful and more aware of what we should and should not do to protect our remaining kidney.

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Good for you Tillie:) I had a friend who had a lot of problems in life, she would phone me constantly or come round for a chat. When I got my diagnosis, I told her the news over the phone, she didn't take it well, she started crying and kept repeating my name over and over. In the end she said she was too upset to talk and would phone back later,

The next day she turns up with a bucket load of cooked food. She was really taken aback when I answered the door, she didn't expect me to be up and about. She kept hugging me and crying, telling me to stay calm and that WE will get through this. I got the distinct impression, she expected me to be curled up in a dark corner with a blanket over my head. Anyway, we had almost an hour of her intermittent crying, telling me that she was so scared she couldn't sleep. Having already lost one friend to cancer recently, she couldn't cope if something happened to me too. I found myself trying to comfort her. Omg! It was all such positive, supportive stuff. After she finally left I certainly felt I needed a dark corner!

This went on for several days, I know she meant well in some twisted way but she was driving me crazy. She phoned me constantly checking to see if  I was ok, was I in pain, sleeping, eating? In the end I lost my temper and told her to get a grip, as she was stressing me out, and to stop with the meals on wheels thing. We haven't spoken since.... I know it is an awful thing to say, but I felt a sense of relief, I think she was sucking the energy out of me.

The English grapevine here in France works faster than texting. The word was that we are no longer speaking because 'I am very stressed and not coping well' lol!! 

 

Djinnie x

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Oh my Michelle...  People mean well, they just do not know as much as you about K.C.     Now hear this young lady..!  You are alive... PERIOD...  think of the alternative and smile a bit will ya..??   There are som many bad things that could of happened that didn't...  put one foot in front of the other and move forward... physically and mentally...  you can do it..!

Ron

dhs1963's picture
dhs1963
Posts: 381
Joined: May 2012

If the grade is low, with no scarcomitoid differentiation, you are in better shape than me.  FWIW,  my Urologist said he got it all, path report showed T1b @ 6 cm...but grade 4 with Sarcomitoid features.  He said that is not a big deal....call me in six months, we will get a abdomen scan and x-rays. 

Instead, I went to NIH (qualified for a Familial study, as dad and grandfather had RCC)....they did a chest CT, and found a solitary Met in my lung. 

Be your own advocite.  If you have not had a lung CT, try to get one.  Smaller mets will not show up on X-ray.  PET is good too.

I trusted my Dr (primary care and Urologist), and they almost killed me.  (Primary would not order a CT or refer me to a urologist after my dad got RCC; said RCC is not genetic....and more recently, Primary sent me home with antacid for chest pain....two weeks later, I had a stent put in (last friday) for a 95% blockage in Left decending artery (I do not remeber the name of the artery).

dhs1963's picture
dhs1963
Posts: 381
Joined: May 2012

nt

izzycohen
Posts: 64
Joined: Aug 2013

Michelle,

Your situation is nearly identical to mine.  6 cm tumor on left kidney.  Adrenal gland and lymph nodes clear.  They did take two lymph nodes.  I also had the same situation with the cancer creeping up on to renal vein.  No chemo or radiation treatment.  I will have a CT scan and chest x-ray at the two month date.  the next scan is tentatively scheduled for 3 months later.  At this writing I am 11 days post surgery.

I'm 10 years older than you.  For what that's worth.  A customer of mine, in Detroit, went through this 4 years ago.  Similar size tumor, etc.  He is doing very well and living a normal life.  He has given me some moral support through my ordeal.

One day at a time.  Keep putting one foot in front of the other.  We will get past this.

 

Good luck.

 

Izzy

Wheaton, IL

LynninNC
Posts: 13
Joined: Jul 2013

I am a new member, previously just lurking. This is my first post.....I never felt that I had anything to contribute before now!   I had an open nephrectomy in October 2012, left kidney. 9 cm, invasion into fat and tissue but no venal involvement. T3a with 5% sarcomatoid differentiation. My surgeon suggested I might be a good candidate for a clinical trial. I am 51, and have enjoyed good health until this surprise. I have been involved in a Pazopanib double blind placebo study at Duke since December. I am pretty sure that I am on the active ingredient but have tolerated it well.  There are 2 tiny spots on my right lung they are watching and the first CT post surgery showed pleural nodular thickening. An April scan showed no changes. So far so good.  I am wondering if you might be a candidate for a trial Michelle? It makes me feel more in control that I am doing something rather than waiting for my next scan. It might be helping me, but more importantly it is helping fight this cancer long term. Perhaps you should talk to your doctor about it? There are several studies going on testing pazopanib/votrient and everolimus. Both are approved for treatment for mets but they are seeing if the treatment can be preventing the start of mets.     Meanwhile, keep moving forward slowly and take control of what you can. Diet and exercise and attitude make alll the difference.

izzycohen
Posts: 64
Joined: Aug 2013

Michelle,

It's about two weeks since your initial post.  I'm going through some of the same issues and wondering how you're coping. 

thinking of you.

 

good luck.

 

Izzy.

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Thanks for asking :) I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care :) I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags :) And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow :) love to you all.....Michelle xxx

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

No, it doesn't matter, Michelle - from one at the other end of the UK at  5:15 a.m.  You seem to have it pretty well taped when it comes to what does matter and you now have another extended Family well placed to answer most of the questions you might have.

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

Hi Michelle,

All I can say is that cancer effects everyone differently.  We and I say we meaning my husband and I thought we had had 2 good friends and we have not seen or heard from them since my diagnosis and operation but you know what its their problem not ours.  I suppose people deal with it whatever way they can and in some cases ignorance is bliss.  You are right it does show you what matters in life.  You will start to have better days and a for the cosmetic side of things I am with you there.  I had my op in January and I bought a swimsuit for my hols this year so I didn't have to embarrass other people but you know what....sod it....I ended up buying a bikini and wearing my scar with pride and to be honest after a few minutes no-one else saw it either!!!  The shape will die down as the muscle and other bits heal up....mine looked like a big ol lincolnshire sausage but its more like a chipolata now!!  You breathe in all that wonderful and fresh Dorset air and look after yourself its onwards and upwards from here on in Michelle....

Eims x

ps.....you are handbags and I am shoes Laughing

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Michelle,

It is good to see you are staying in touch, as you have discovered, this is somewhere you can come to for support or just to vent.  Everybody here understands how you are feeling, so you can speak freely, and there will always be someone here to listen!

I understand when you say you feel broken, in a sense you are!, but as time goes by you will learn how to live with this. Having had cancer doesn't have to dominate your life, but it will if you let it. I have lived with this for ten years now, it has been a concern, but not something I think about on a daily basis. No amount of dwelling on it was going to change the facts, it is what it is!

You seem to be discovering what and who are important to you right now. Life has changed, of course it has!, but at the same time, you say you realise how blessed you are. Just writing on here has helped to give you an understanding of how rich you life is. It is all there still for you to enjoy, don't let this diagnosis get in the way!....Just a thought!...If writing has helped you, maybe keeping a journal would be useful!

In my experience with anxiety and panic attacks, trying to focus on not being anxious is counter productive. The more you try not to be anxious, the more anxious you become!  Give yourself time, your body and mind are slowly adjustiing! You can't force yourself to feel a certain way, but you can gradually change your way of thinking, and you will, given time!

 

 

Djinnie x

 

*By the way did you manage to get hold of some Stevia?

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

I'm sorry for your diagnosis, the reason we are all on this board. I too was being checked for something else when they found a 15x11x10cm tumor in my left kidney. It was removed on April 9th, and it does take some time to heal. My Dr told me I would be able to go back to work in 4 weeks, but there was no way I could have done that. I walked and walked and slowly, I started to regain strength. I think the hardest part for me was wearing anything around my waist. The incision is quite large and they had to remove a rib to get it out. 6 weeks later they removed a wedge section on my right lung as well as a few more lymph nodes. Currently, I still have a met in my liver.

Emotions will run wild..... but hang in there. You sound very positive and that and your friends here will help you get through the tough times.

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