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Please help: My aunt has cancer

Air
Posts: 15
Joined: May 2015

My aunt has cancer, and I don't know what to do or expect.  This has been so devastating.  She is my best friend, my favorite person in the world.

 

She went to get checked because of lower back pain, mostly on the right side, and heavy periods/spotting in between periods back in December.  It had been going on longer than that, but that was when she could finally get an appointment with the gynecologist.  Her Pap was normal, ultrasound normal, and the doctor told us it was probably perimenopause.  Then they found fibroids, and finally did a D&C March 31st.  The doctor found a tumor in her pelvis which was later confirmed to be cancer.

 

When the results came back 2 weeks later, they were inconclusive.  The 8 pathologists that looked at her case thought it could be carcinosarcoma or Ewing's sarcoma.  At that time, the tumor was determined to be confined to the pelvic area.  The gynecologic oncologist that we went to (2 weeks after that was earliest appt) couldn't pin down the primary, said cells were poorly differentiated.  The only thing he could tell us for sure was that the cancer was probably a sarcoma, and it was rare and aggressive.  They had scheduled my aunt for a hysterectomy, but after looking at her CT, the doctor said surgery was not an option at this point.  They'd need to shrink the cancer first.

 

We saw a radiological oncologist the next day, April 30.  He told us, after performing his own examination and conferring with the gyn/onc, that they'd determined the final diagnosis to be cervical cancer that'd spread to the uterus, ligaments of the pelvis and vagina.  I think at this point we were all inconsolable.  My mema, my aunt's mother, had passed away from cervical cancer several years before.  Losing her was such a blow to our entire family, and we all remember the pain mema went through--even though she survived 5 years after diagnosis back in the 90s.

 

The radiological oncologist wanted to start radiation in combination with chemo ASAP.  We took a bit more time to get a second opinion (this 2nd doctor was world-renowned and told us not to start treatment until he'd made his own determination about my aunt's case).  The 2nd doctor ended up agreeing with the diagnosis but wanted chemo only.  He said having radiation now might make the future surgery more difficult.

 

I feel helpless, like we've waited forever.  Her symptoms--the nausea, loss of appetite and fatigue, in particular--are already so awful.  She's had chills and then sweats, and now her right leg is swollen.  And that's before treatment.  Is this normal???

 

My aunt has her first radiation and chemo appointment scheduled for tomorrow.  If you could, please say a prayer for her.  I love her more than anything.  God bless you all who are going through this.  I'll be praying for you as well.

Balby
Posts: 2
Joined: May 2015

I will pray for you and your family, especially your aunt.  I have been undergoing chemotherapy and radiation therapy now.  They chose not to operate because it is better to get to the radiation and chemotherapy treatments rather than having a patient undergo surgery.  They said the the outcome is no different at this point.  It seems like your aunt has so much support which is what she will need.  If you have a good oncologist and radiologist team they will ensure that your aunt does not suffer to much of the side effects.  

I have 2 more sessions of chemotherapy.  I will be having brachytherapy soon in June.  Keep the faith.  I know that I have heard so many stories from so many people around me about how they have survived from a Stage IV or that my oncologist brought their friend back from a Stage IV cancer.   So keep the faith.  Stay positive and supportive.  You take care of yourself as well.

Air
Posts: 15
Joined: May 2015

Thank you so much for replying, Balby.  I'm very sorry to hear that you are going through this as well, but I will most definitely keep you in my prayers.  It is hard to keep the faith.  My aunt's diagnosis seemed to come out of nowhere.  She's only 47, and we were happy to believe it was just fibroids.  Good luck on your final 2 sessions of chemo, and I hope the brachytherapy goes well.  Again, thank you so much for the kind reply, and you are in my thoughts and prayers.  Stay strong.

Air
Posts: 15
Joined: May 2015

The swelling in my aunt's leg ended up being a blood clot.  They found that one and another in her lungs on Wednesday.  The hospital kept her overnight for 2 nights on Haperin, and since my aunt is anemic, she had to get 4 blood transfusions to get her count up.  They said it needed to be a certain level for the radiation to be effective.  She was discharged from the hospital at 6:00 am, had her first radiation at 8:00 am, and her first chemo at 9:00 am.  Yes, my aunt is one tough cookie.  My mom took her to both appointments.  They now have her taking Lovenox shots (2 a day to be taken for the duration of her cancer treatment), which she will administer to herself.  The chemo her oncologist has her on is called Cisplatin, and she'll have 6 rounds (1 per week) and radiation 5 days a week for 6-7 weeks.  The worse part of everything was seeing her suffer (being poked and prodded and just so wornou. In the ICU); the best part was having her come back home and tell me the people at the radiation and especially the infusion place were so nice and great.  Anyone have experience with these drugs?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Air, I am a little lost on what treatment your aunt is having, but that's ok.  There is a lot going on for her so take a breath.  Treatment, be it chemo or radiation is exhausting.  I don't know one person who hasn't found radiation to be completely draining.  Fatique that I had never known in my life!  Also, the radiation to the pelvis has a huge impact on the bone marrow in your hips (there is a lot there), and she would only get chemo if her numbers are high enough. 

I had met with a dietician who speciailizes in helping cancer patients going through treatment and getting protein to help the bone marrow is important.  She may not feel like eating but you can help her find things she likes and gently encourage her to get as much as she can.  Meat, cheese, eggs, yogurt, protein shakes and bars (some are better than other!), nuts, etc...she may lose her taste for anything, but food (and rest) are part of helping with treatment and healing.

Blood clots are serious so I am glad to hear she got treated for that.  I am sure it is something they will keep a close eye on.  She is in my prayers and hear she is lucky to have such a loving niece. 

Air
Posts: 15
Joined: May 2015

Trying to be prepared for the fatigue while knowing we can never be fully prepared.  Thank you so much for telling me about the protein and for the prayers.  I appreciate any info or helpful tips I can get so I truly appreciate that, NoTimeForCancer.

ccfighter
Posts: 476
Joined: Jan 2012

Hi Air,

 

i am am sorry that your aunt has to deal with all this.  It sounds like she is in good hands.  Cisplatin with radiation is the standard treatment for cervical cancer that cannot be surgically removed.  I was diagnosed with cervical cancer in November of 2011.  I had a radical hysterectomy but pathology indicated that the tumor was large and had spread to two lymph nodes so I had chemo with carbo/taxol and then did 5 weeks of radiation with weekly Cisplatin.  Then I did more chemo after that.  I am not going to say it was easy, but I made it through and am doing well now.  When the going gets tough, remind your aunt that this too shall pass.  Laughter really is the best medicine.  Hydration is important, as is nutrition.  Make sure she has things to eat that she enjoys.

hang in there.  Hugs to you both.

Air
Posts: 15
Joined: May 2015

Hi ccfighter,

I'm so happy to hear that you are doing well now.  You must be so strong to have gotten through all of this.  My aunt is a fighter, too, and I will help her in any way that I can.  Her doctor also said the same thing about eating, just to let her have whatever she enjoys bc it's important to get the calories/nutrition. Thank you so much for replying!

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

Air, I am so sorry to hear about your aunt's diagnosis. It can be so overwhelming trying to pinpoint the origin of the cancer, as well as treatment. I was diagnosed with stage 4a vaginal cancer, it had spread to the rectal wall. My tumor was to large to do surgery first,, so i had concurrent radiation and chemo (5fu and cisplatin). It did shrink the tumor, and I had to have  surgery afterwards, that was over 3 years ago, all has been clear so far. The radiation will zap your energy, as well as the chemo too. Your aunt sounds like a fighter and has such a wonderful family to support her though this. That makes things easier. When I was 1st dx, my husband told me we would take it one day at a time at and not lose our sense of humor. And that's how I got through it.

Just be there for her, your support will help so much!

Sending good thoughts and prayers. Please keep us posted.

Dana

Air
Posts: 15
Joined: May 2015

Overwhelming is right; when they were trying to figure out the cancer's origin, I believe we all felt absolutely helpless.  i'm so glad to hear that you are still going strong after 3 years.  That is so encouraging.  It really helps to know that there are survivors out there.  i've read my aunt every reply and will continue to do so.  Thank you so much.

Air
Posts: 15
Joined: May 2015

Hi everyone, I wanted to post because my aunt is still fighting, and despite several setbacks, she is doing well today.  After 28 radiation treatments and 4 chemo sessions (all of which were constantly interrupted by: a pulmonary embolism, low hemoglobin, low platelets, holiday weekends when the rad/infusion centers were closed), my aunt completed her first round of radiation treatments last Wednesday.  It was not easy, but she's strong.  We celebrated by going out to dinner--and we thank God that she has somewhat gotten her appetite back!

Today, my aunt had a pelvic exam and CT scan.  The radiological oncologist seemed hopeful.  said there was still some diseased tissue though, so we'll have 5-10 more radilation treatments and possibly a cylinder treatment.  Still waiting on CT results.  If anyone has had experience with the cylinder radiation, I'd love any info you could give.  My aunt and I are still hopeful; we pray every day, and knowing how many people are affected by this, we always include everyone in our prayers.  God bless you if you are in this fight or if someone you love is.  Keep the faith and stay strong.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Oh my word!  Your aunt has been through a lot. 

I am guessing that all the radiation you have talked about her getting is EXTERNAL.  The "cylinder" you are referring to is INTERNAL, or also called brachytherapy. My radiologist showed me pictures of two different types of devices used for internal radiation, but I had a cylinder, and it is just like a big tampon like device inserted in to the vagina.  Radiation is released to run up the coil to the end of the cylinder, stays there for a few minutes, and then it retreats back to the box.  It is an intense dose to the area.  It doesn't hurt.  I only wish I had kept count of how many people I showed my private parts to!  :) 

Like all radiation, it can bring its own side effects.  Brachytherapy will cause the vagina to shrink so after treatment is over they should give her a dialator to use.  She will want to use it every day for 10 minutes.  It will keep her vagina open and make future exams easier for her.  I know my box said 3 times a week for 10 minutes, but I do it every day and my doctor even comments on "I can tell you are using your dialator". 

Brachy also can "burn" the tissue so my doctor continues to see the end where my cervix used to be PINK.  I still get a pink tinge when I remove my dialator which is nothing but always worries me. 

It is still overwhelming to think about.  You aunt is so lucky to have you by her side and doing research.  I can't imagine what it was like for my sisters and mom, but I do know I couldn't have made it without them.  God bless the caregivers.

Air
Posts: 15
Joined: May 2015

Thank you so much for responding NoTimeForCancer.  I know this was from a while back, but just please know that I appreciate all the info and support you and others have generously provided.  My aunt is about to start round 2 of chemo next week, and we are all feeling unsure/scared right now.  We always try to bring it back to the positive, but it's difficult sometimes.  I'm just praying that God will see us--and everyone who is struggling with cancer--through this.  Hoping you are well.

Air

Air
Posts: 15
Joined: May 2015

Hi everyone,

I'm hoping for any info or advice.  Here is an update on my aunt's journey.  After being diagnosed with cervical cancer in April, she completed her first round of chemo (6 treatments of Cisplatin) in August and has had I believe 28 external and 2 internal radiation treatments.

Recently, her oncologist told us after reviewing the results of her PET scan that the cancer had dramatically decreased--but there was still some diseased tissue/cancer.  This week we found out that round 2 of chemo treatments will be more aggressive.  They want to do 6-8 treatments of two drugs: Paclitaxel (Taxol) and Ifosfamide (Ifex).  My aunt is scheduled to get a port next Tuesday and will probably begin treatment on Wednesday.  The treatments will last for 2 days during which she'll be in the hospital then we'll have 3 weeks to recover between treatments.

Does anyone have any experience with these drugs?  The oncologist talked to us about some very scary possibilities, and I'm just hoping to get a better understanding of what to expect.  Round 1 was awful, but this one sounds like it's going to be much worse.  My aunt knows that she is going to lose all her hair, which did not happen with the Cisplatin.  What can I do to make this easier for her?  Also wondered: will it hurt if I hug her after she has the port?  I'd appreciate any advice you could give.

Truly any info would be helpful.  I'll keep you all in my prayers and thank you,

Air

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Air,

I have read here a lot of women with below the belt cancers, as well as myself, had a combo of Carboplatin (similar to the Cisplatin) and Taxol at the same time.  Taxol is one they monitor you on and watch for an allergic reaction.  It is harder, but doable.  She is in a setting to monitor that, so they will watch her closely.  They know pretty fast if you are having a reaction or not, and at least I had some Benedryl in to my IV - which I think is common.

I did not have a port, so I am sure the ladies here who have had one can comment, but of the friends I know who have had one I was able to hug them just cautious of the area.  I have a friend who has a lot of pain with scar tissue from her breast cancer surgery and am very careful if I hug her.  I think it is the "human touch" that means so much, so it doesn't necessarily mean a body-crushing hug is necessary.  The area needs to heal like any cut to the body.

I had never heard of two day treatments, but maybe one of the other ladies (or their family) have. 

I pray every day that God grants someone the wisdom to find a cure for this terrible disease.  

 

ccfighter
Posts: 476
Joined: Jan 2012

Air,

im sorry that he first round didn't knock the cancer out of your aunt but I know the second round will.  is there some reason they can not do a hysterectomy to remove the remaining cancer?

i had Taxol but not 5FU though I know it has a long history for use with cervical cancer.  The taxol will cause the hair loss which can be uncomfortable.  When my hair began to fall out my scalp hurt so I shaved it and that helped some.  Once it's all out the scalp no longer hurts.  Taxol also caused some bone pain for me, mostly in my legs.  Some people find that Claritin helps with the pain.  For myself, taxol was given with carboplatin so I can not speak to the 5FU.  Fatigue is a common side effect as well as constipation.  Take a stool softener.  

As for the port, the first week or so is uncomfortable, mostly in the neck area.  After that no problem.  Hug away.  I had three little kids crawling all over me with my port.  They were obsessed with It.  Kept pushing on it like it was a button.  Never bothered me a bit.

 

i hope that helps.  Keep in touch.  Hugs.

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