CSN Login
Members Online: 7

You are here

I Just need to mostly vent

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

I was dx in June 2013 with UPSC grade 3c. Total hysterectomy, 18 carbon/taxol and four internal radiation treatments. I finished treatment in Feb and just had a good 3 month recheck. I get my port out in Jan. If all is well. Can hardly wait. One month before my dx my husband was dx with kidney cancer and had his right kidney removed. He has small tumor on the left kidney but we are just watching it. No chemo or radiation.

 

This week my daughter was diagnosed with invasive ductal carcinoma of the breast. She is having a double mastectomy the first of Dec. Enough is enough!. She is only 43 and this was her first mammogram. Thank God she had it done.

 

My husband and I are doing pretty good. I just started on Gabapentin for the neuropathy and it is helping a little.

 

Our daughter is living with us currently(with her 17and18 year old). We will all be there for her as she was for us. Sorry for using this forum to dump but needed to do it somewhere safe. I just want to scream and cry but we just have to take a deep breath and start this journey once again.

 

RO10, thanks for the info a couple of weeks ago about when you had your first recurrance. I guess we can't help but worry. Especially now.

Thanks for listening.

pinky104
Posts: 574
Joined: Feb 2013

Have you checked to see if you're living over a toxic waste site or something?  I've heard of many couples that have both had cancer, sometimes at the same time and sometimes in sequence, but adding a daughter to the list so soon is really too much.  My husband had melanoma two years before I got UPSC.  We share the same oncologist, and when one of us goes in, the doctor always asks about the other one.  We share the worry that one or the other of us will have a recurrence (I may now), so it gives us one more thing in common.  It's not exactly the kind of togetherness we had in mind.

Everyone in your family is still alive and everyone is being taken care of, and that means there is hope for all of you.  Try not to let the stress get the better of you, as you don't want to have a recurrence.  There isn't much you can do to change the situation, just try to handle it the best you can.  Be thankful your daughter's kids are old enough to comprehend what's going on and that you're not dealing with explaining all this to little ones.  Our prayers will be with you and your family.     

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

we have lived in same house since 1968. Hopefully it's not toxic dump site. Nicole lived there for twenty years and then back for last 2 1/2 years. Cityt water and not well water. Just luck of the draw I guess.

 

Gary and I have same PCP. He was shocked at both of us and drop jaw when Gary told him about Nicole. Just not more surprised then we were. Thanks for the words of encouragement. One day and one cancer at a time.

Are you having symptoms? Are u on West coast. I'm Vancouver Washington.

AWK
Posts: 364
Joined: Mar 2013

So sorry to see this!  Vent away.  You have so much on your plate.  My mom had triple negative breast cancer 8 years ago.  My father passed from brain cancer and two of my brothers have had melanoma.  My doctors talk a lot about the genetics in all of this.  For my UPSC Stage IIIC they are more focused on my father's cancer than my mother's.  I never really thought about the family history until we penciled it out and now, with platinum resistance and mets - they are really focusing in on this.  We moved around a fair amount So no relation to where we lived.  Keeping all of you in my prayers. 

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

I hope your daughter does well and that both you and your husband continue to be cancer free.  It does seem like cancer is everywhere these days.  I often wonder if it's because of our age that so many of my friends are being diagnosed, and I know that age is a factor, but your daughter?  43?  First mammogram?  No! 

I had both breast and endometrial cancers in 2010.  My husband had prostate cancer diagnosed in 2013.  We're both doing great.  My daughter is 42 and has yet to have her first mammogram.  Really?  What part of your mother had breast cancer does she not get?  I'm about ready to slap her, but that's probably not appropriate.  She does have an appointment with new pcp next week for a general health check and so I'm hoping s/he will order the mammogram. 

Vent away.  You have every right to do it. 

Hugs,

Suzanne  

pinky104
Posts: 574
Joined: Feb 2013

Sorry, Joanne, that I didn't reply way back on 11/2.  I go on this site sporadically, and even though I've been on here since then, I somehow missed looking at the your reply to me.  When I was first diagnosed with the new mass, I was having left sided abdominal pain.  I thought it was gastritis, as I'd been addicted to drinking raspberry lemonade, and the acid from that was getting to me. I have since stopped that bad habit.  I mentioned the pain to my gastroenterologist, who passed it off as adhesions from surgery and left the room right after to go to his next patient.  The minute he walked out of the room, I started thinking to myself that this was a fairly new symptom, and I was four years out from surgery at that point.  If I'd had pain from adhesions, it most likely would have presented itself sooner.  I happened to have an appt. for a thyroid and cholesterol check at my family doctor's office a couple of days later.  The PA there agreed with me and offered to do a CT scan to rule out cancer.  The scan showed the mass, but it was on the opposite side from where my pain had been. It also showed some scattered diverticulosis, so I wondered if that might be causing my pain.  Just this past week, I discussed it with my PA again, and he said it was likely that I'd had a little bit of constipation.  I still have the left sided pains occasionally, and a couple of times, I've had some pains on the right front. Since the mass is apparently near the spine, tha right-sided pain isn't likely to be from the mass either, unless it's what they call "referred pain."  I have no other symptoms and I feel fine.  I'm doing a lot of work around the house and there is no real clue that anything is wrong.  I wouldn't be surprised if when my gyn/onc takes the thing out he finds that it's not cancer.  It could also be a fluid collection from having lymph nodes removed, but it grew slightly in size so that makes the fluid a less likely possibility, I guess.

You had asked if I live on the west coast.  I live in a small town in upstate NY, a little less than an hour from the Vermont border.  My father was a part time farmer in another small town and used DDT on his crops.  The house had asbestos wrapped around the pipes in the cellar.  Both my parents had cancer.  My mother had breast cancer twice, my father had prostate cancer, and my maternal grandmother had cancer in both breasts at the same time.  I guess genetics and environment probably both affected me.  My current house has radon gas, but we put in a radon system a few years ago, the year before my diagnosis.  Radon is only supposed to cause lung cancer, though.  Even with the radon system, we still have a slightly higher than acceptable level of gas in our cellar, which can't be fixed as the house sits on shale and can't be properly vented.  I'll probably end up with lung cancer someday.  My husband had melanoma two years before I got my cancer. We all have our cross to bear, I guess.    

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

I am sorry and this is a safe place to vent.  Cancer is a horrible disease and it does seem to be everywhere anymore.  Prayers for all of your family.

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

SUzanne, if your daughter's primary does not order mammogram maybe you should slap her. My daughter's Dr is the one that got her to go for mammogram. My nagging May have helped. I understand your "what part of" statement you mean. 

 

Genetics are a big question mark as our daughter is adopted and she does not know genetics from birth parents. Dr says he will approve Braca gene testing because of young age and unknown genetics.

 

Good news - just bought tickets to Puerto Vallarte for late Jan for 10 days. Sun, sand, and relaxation.

 

I have been on the breast cancer discussion board and there is so much I sure didn't find it as helpful as our uterine site. Thanks for all the encouragement from all of you and especially Double Whammy

 

 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I agree that "enough is definitely too much".  You have certainly got a very full plate.  I am so sorry about your daughter.   What a lot to deal with.  I hope her 17 and 18 year old children will be a support for all Of you.  Glad your husband is under observation?  I hope you are recovering from your treatments.  It takes time for the body to recover.

I am curious why you are having your port removed?  What kind of follow-up are you scheduled for?  You listed your grade as 3C.  Is that your stage?  I use my port for labs and CAT scans.  My veins were ruined with the chemo, so I am so happy to have my port. 

You do not need to apologize for venting.  This is a safe place to do that.  We can empathize with you for some of what you are going through.  None of us have had all that you are going through.  

I was happy to see in a later post that you have a trip planned in January.  You definitely need some fun and relaxation.  Continue to take it one day at a time.  You and your family remaining my prayers.

cheerful
Posts: 266
Joined: Apr 2011

Dear Joannewtta:

  I am so sorry to hear about the cancers in your family.  Cancer runs in my family also. My father passed away 22 years ago from prostate cancer at the age of 72. I still miss him a lot and always will.  Also, my mother had breast cancer diagnosed in 1973, caught at a very early stage thankfully and is still alive. She had no follow up treatments like chemo or radiation then although she did have a modified radical masectomy. My Mom is doing good and is now 91. She never had a reoccurrence which is really great.  God Bless her as I am so grateful as I still have her.  She is a wonderful mother and has given me great advice through the years.  

   My first cousin passed away from brain cancer 2 years ago at the age of 73 and he was my mother's godchild. He was diagnosed in the summer of 2010 and lived almost 2 1/2 years with the cancer.

   I was diagnosed with UPSC clinically stage 1 back in early 2011 and so far remain with No evidence of disease for which I am very grateful and thankful.  I am grateful for each and every day and every day to me is considered a gift.

  Your daughter is very young to have been diagnosed with breast cancer. Thankfully, she had the mammo. They do say on the news that these mammos can save lives which obviously it has for your daughter getting diagnosed.  I wish your daughter all the best with her surgery and I guess that she will probably have chemo once her surgery is done.

  Just take one day at a time.  You and your your family will get through all of this.

Cheerful

a/k/a Jane

 

 

  

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

 Ro10 - You asked why I'm having my port removed. Basically it's because I've been nagging my Dr. to remove it. He said he didn't want to take it out until I had at least a year of good reports. My follow ups have been a ct scan in April(clean from neck to knee). Physical exam every three months; one CA-125 and just checking how I'm feeling. So far, so good. I have some bladder issues and back pain but have had three minor back surgeries and have spinal stenosis so some pain expected. My oncologist says CA 125 is not a really good marker for me because it has remained low, never over 39 just after surgery.

When did you get your port put in? Mine was put in before I started any chemo and my chemo was weekly for 3 weeks, a newlasta shot and then a week off before starting again. I live within 3 miles of the cancer center and Dr. indicated that % of sucess is slightly higher with weekly chemo.  Did you just choose to keep yours in or was ii put in when you had recurrance. I know the odds of recurrance but so far feel great and just can't imagine going down this road again. I know no one chooses it. I was a Stage 3C meaning I had a malignant pelvic lymph node. The pathology said that the tumor had infiltrated the myometrial wall o within 1 mm of the serosel surface. It also said the the tumor is serous papillary high grade with extensive necrosis noted. That is directly from the pathology report. Are you hinting maybe I should give in and keep the port in for awhile longer. I think I really want it out more for mental health of saying I'm done with this. I don't know. Let me know what you think.

My daughter is doing well; we are just waiting for surgery date. Probably the first part of Dec. She works for a large company and employees have already donated vacation time for her to use. She will be well taken care of I think by her work and kids will kick in good, expecially her daughter that just graduated from high school and is working as a dental assistant. She can help do some of the drains and wound care after surgery; not a chicken when it come to that. She offered to do my shots after surgery for the two weeks but I did them myself because I wouldn't look chicken in front of her.

Ok - enough - thanks for all the thoughts and prayers; we'll be fine, just have to suck it up look at the positives.(She could have not gone in for the mamo).

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

i am so sorry you and your family is going through all this.   Please know my thoughts and prayers are with you

 

regarding ports I had mine in for over six years.   No one would remove it.  My original doc retired and he had wanted to wait for another scan.  New doc kept putting it off.  But once my local hospitals refused to flush my port I finally found a radiologist who finally removed it

my best to you

 

Kathy

ps.  I am typing from my phone so I apologize for any mistakes.  

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

i had my port put in after my fourth cycle of chemo during the first round of chemo,   in other words July 09.  My chemo was every 3 weeks and I had the sandwich treatment.  The chemo ruined my veins.  I asked about a port before I started chemo, but the doctor in Florida said if you have good veins you don't need a port.  Was he ever wrong.  My fourth cycle of chemo it took lab 3 sticks and the chemo nurse 2 sticks.  I decided then I wanted a port.  The doctor in Illinois said I could get a PICC line.  I said no, because I would probably need further treatment I wanted a port.  

My port has never been uncomfortable for me.  I too have Stage 3-C and my recurrences have always been in the lymph nodes.  I am glad I have had my port all this time.  If you will feel better mentally having the port removed then you should do that.  I just remember my Florida doctor telling me that the Cancer I had was not curable,but treatable...like a chronic disease.   So I do not expect a cure,but expect to need treatment.  We are all different and you need to do what you think is best for you.

glad you and your family are doing okay.  Continue to take it one day at a time.  In peace and caring.

AWK
Posts: 364
Joined: Mar 2013

It is such a personal thing the port.  I am Stage IIIC and I still have mine.  Now I am glad I kept it as I am now battling metastis in five locations, all spread out.  All are inoperable and none are able to be safely radiated. This was discovered at my first three month check up and they had me back in chemo within a week of finding them.  I am now into six rounds of first Doxil and now Avastin while a plan is figured out.  The port doesn't bother me, the only thing is that it is a constant reminder and I do have days where I could use a cancer break.  So I think I understand.  It is up to you.  Keeping your family in my prayers.    

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

Awk, Ro and Kaleena - thanks for the notes on the port. Mine is not uncomfortable until I hit accidently. Maybe it is more of wwhat AWK says; it is a constant reminder of cancer. I guess when I see my oncologist in January we need to have a chat. He wanted me to wait at least a year after finishing treatment. I will give it real thought and not have it taken out just because.

My daughter has an appointment with the plastic surgeon next week for the reconstruction so it is moving along pretty quick. Thanks ladies and I really appreciate the candid comments.

Ro - have you left for or are you in Florida. I know you said you were leaving last Saturday.

Joanne

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Yes we are in Florida.  It was 24 degrees when we left Illinois Saturday morning.  Today it will get in the 80's.  I like that much better. We will stay here until April.  Hope you continue to do well.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Ladies,  I just returned from my trip to the Galapagos Islands off the coast of Ecuador and feel like my soul has been renewed. I realized on this trip how motivated I am to survive and to live a long life.   I want so much to continue to enjoy the beauty and wonder of life, nature and wildlife.   I think that I am now beginning to feel a sense of hope. I hardly thought about my cancer the entire 11 days that I was gone.  I thank God for that. 

Joanne, I had my port inserted the day before Thanksgiving last year.  I had stage IIIA UPSC and will likely keep my port in for 5 years.  I don't want to have it removed only to find out that I have to have more chemo due to a recurrence.  There is just no guarantee that I will remain NED.  I also wanted to tell you how sorry I am for all that you are dealing with.  I hope your life becomes less stressful and that you, your husband and daughter embrace good health.   

Ro, welcome back to Florida.  I heard that recently the night temperature went down to 40 degrees.  It is beautiful here in Vero Beach today and I hope you are enjoying the nice weather today as well. How are you doing and feeling since your cyber knife?

Warm regards to all my sisters here,

Cathy     

 

blarneygirl
Posts: 5
Joined: Nov 2014

Hi ladies.  I am new to this sight and I must admit I am glad to know I am really not alone.  I was diagnosed with stage IIIC Endometrial cancer in May of 2013.  I had my port put in right away and still have it.  I went through a total hysterectomy, chemo and horrible internal radiation.  My scans were clear for 11 months.  Now I have a few small spots.  Luckily they are not attached to any organs, but I do have to go through chemo again.  Anyone doing Doxerubicin?  Side effects?  I did really well with the first chemo.  It is so dissappointing knowing that its back.  I suspect my port will stay with me for a long time.

AWK
Posts: 364
Joined: Mar 2013

It wasn't that bad at all!  Tired and dry sloughy feet.  I started to get blisters easily so I just put moleskin patches on the tender spots.  Slathered my feet in udderly smooth and wore cotton socks to keep them moisturized at night.  I did get some neuropathy but it wasn't bad.  The carbo/taxol was much harder.  I recently got switched to Avastin while they work up a signature cocktailfor me.  I worked full time through the Doxil and now while on avastin.  

My mets were found at my first three month checkup.  Five, all spread out and not treatable with surgery nor radiation.  it is a rough and longer journey than I expected and somewhat shocking but I am enjoying life and have had some great experiences because of the cancer.  

Good luck and if you have more questions reach out.  If I think of anything else I will post.  Anne

Maggie_mac
Posts: 32
Joined: Mar 2012

Good morning from Philly.  I got my port after about the second round of the second series.  I too had asked about a port when I started chemo and was told I had good veins.  Chemo took care of that.  When I had a CT scan ordered with contrast and they gave up after 13 pokes, including a try using ultrasound they decided a port was in order.  The chemo nurses were relieved.  In May I completed my third round of 6 and am on a 2 month schedule for blood tests and flush [IVb].  The only problem I have with my port is with my seat belt.

I expect the port will be with me for the duration.

My best to all,

Maggie    

blarneygirl
Posts: 5
Joined: Nov 2014

I seem to think there must be a connectionn to certain cancers.  My father died of colon cancer in 1990.  My mother died with Multiple Myeloma in 2005.  No other family history of cancers.  The doctors were much more concerned with my father having colon cancer in my dx of endometrial cancer.  One Dr. mentioned I was predisposed to this DX becasue of colon cancer in the family.  Interesting.  As for my port, I had and still have very good veins, but had no choice really in the port.  It was just part of the treatment plan.  It desn't really bother me.  It shows more than they told me it would. And if you bump it it hurts.  

blarneygirl

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

Hi,

I am so concerned about your situation and feel for your family.

I would have to say that I am basically a get to the bottom of any situation kid of gal. And your cluster of cancers causes me to want to investigate if there could be some environmental trigger going on.  I would be interested in doing some basic research if you are willing to share the area you live in, an actual city would be very helpful and I'll see what I can find out. I have a nineteen year old granddaughter that is with me, i can imagine that you are worried about your granddaughter's future if she stays in the area. In the meantime, there are some foods that are capable of chelating some toxic metals. Basically bonding with them and taking them out of the body.

Cilantro and apples are two very good ones. Be sure to check with your doctor to see if there would be any contraindication for their use before using them, and drink lots and lots of water.

You can let me know here or feel free to email me privately on this site.

Hugs,

 

Claudia

 

nempark
Posts: 683
Joined: Apr 2010

Hi Claudia, this is Nempark, I have known you for a very long time.  I hope you are doing well.  What you said about the clusters and being an environmental thing peeked my interest.  I don't know if you remembered, but just after I was diagnosed and just getting better my eldest daughter was diagnosed with blood cancer.  OMG what a journey and she did not make it.  My heart still hurts, but fortunately, I am enduring and it still amazes me how much the human body and mind can endure, we are definitely not created to crumble and fall when we are faced with unforseen circumstances.

This month will be two years since she passed.  I will not wish this on any mother.  So now I am thinking although I am no longer in that house.  My neighbour had breast cancer, behind my house the guy had prostate, one block away another guy stomach cancer and I know of another person closeby. 

I think it is about five years now since you are NED, you have many more to go.  Thank you for checking in. Best regards 

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

  I read your message at the college in the library and it just took my breath away. Guess kids at college must sob all the time in the library. I am so glad that you are alive and kicking. I know how you must feel as my young son died, seems like eons ago, over forty years now, and still I grieve. Won't tell you it ever fails to humble your heart, but the days do go on and of late I have found myself laughing more, still crying, but laughing more. My heart is yours. My ears are alway ready to listen, although right now I can't find my phone.

About the clusters, where the heck do you live? I would invite you to live with me, but for the moment, my car seems to be the only home I've got. It's fine. Was a choice of a house in Wisconsin or an education in film making and carring it in California. I chose the car, as education trumps comfort in my book. I am happy oddly enough. Actually happier than I've been in ages. Have made many friends. A large majority of the homeless breakfast diners at McDonalds in the wee hours of the morningare quite fascinating and ready to discuss just about any topic. No drug users among them, a number of advid golfers, so the stereo type of what the homeless look like is way off far as I can tell.  And absolutely the count of the number of  homeless is horrendously low. Hard to count the homeless in cars.The different stories are fascinating. I plan on making a movie.

I could buy a trailer if you're really interested in chatting. Maybe I'll just get myself a trailer and hang out a shingle that says, Share Your Story and Get Hugs Here.

 

But, anyway, think this has prompted me to post a question about clusters.

 

Email me any time.. claudiaallen27@yahoo.com Would love to hear from you or anyone else who has a mind to share their two cents worth on any topic. If anyone is going to email me, please put csn cancer board in the subject so I know it's important.

Cripes, I guess I should have emailed you.

I will think of you often and offer comfort in my thoughts of you.

 

Claudia

 

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

If you go back to the first post of this Venting you will understand where I'm coming from.

The update is that my daughter had a double mastectomy on Dec 8th with the beginning of reconstruction by implanting the expanders. Because she was a smoker the first week of healing was critical as the Dr. was very concerned with the health of her skin. All is doing well and it looks like healing is doing well. All lymph nodes have tested negative but we will get the final news on chemo or further treatment tomorrow. She was Stage 1A so as good as it gets with cancer. She is doing good and has had such a good outlook from the beginning. Her Dr. did the Brca genetic test and it came back negative for the cancer gene. That is such a relief as she has a daughter and two sons. So important and her insurance approved the testing immediately. It's so frustrating to have my daughter with this so young. Why wasn't it me? I've survived one round of treatment; I could do two!

A week before her surgery my brother called to tell me that he is doing chemo for Non-Hodgins. He didn't tell me until his second chemo because he knew we were dealing with so much already. We have not had a big history of cancer so all these hitting so close to home have been mind boggling. I know we all have a tipping point; I'm still processing all this and know that one of these days soon it is all going to hit me like a ton of bricks. I just have to wait until after Christmas. I'm going to sit with my brother Tuesday for his third chemo; I just get to sit in the visitor chair.

Merry Christmas to all and lets have a good 2015 please.

I wish you all strength to deal with all this. We're stronger than we think we are when we start this journey.

Subscribe to Comments for "I Just need to mostly vent"