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The journey begins

The journey begins

Posted by Raleigh on Apr 14, 2018 4:43 pm

On Good Friday my gynaecologist called to let me know my third biopsy had come back and I had vaginal cancer.  In November I had signs and had the PAP test and first biopsy.  Near Christmas got a call saying all was clear, in January there was an ultrasound, all clear, in February another exam and biopsy and all clear so went for the D&C.  Nothing out of the ordinary could be seen except for the fact I was still passing blood.  So she did a physical exam anumber 3 and found a rough spot in what must have been an unusual area up in the back.  So she did the third biopsy.   After the procedure I was told in her 35 years of practice she had never seen this.  This time It came back positive.
 

Not the news I wanted but as the weeks have passed I thought how this could have been missed had I not continued to have bleeding.    This made me think of others with vaginal bleeding incidents (which I find out are quite common ) and if it stops, that something may be missed in the normal testing they have.

Tuesday I meet with the Cancer people at the hospital.   We will go from there.

 

Re: The journey begins

Posted by Brighty on Apr 14, 2018 5:10 pm

Raleigh‍  I wish you all the best in the next steps of your journey
Help is out there. All you have to do is reach out.

Re: The journey begins

Posted by Raleigh on Apr 14, 2018 5:21 pm

Thank you.

Re: The journey begins

Posted by Kims1961 on Apr 14, 2018 10:11 pm

Raleigh‍ Welcome to the site and sorry to hear of your diagnosis.

Cancer is such a journey - both physically and emotionally.  I had years of all clear mammograms and no signs of breast cancer, so was shocked to find out that i had Invasive Ductal Carcinoma last Aug.2017. What has helped since my detection and throughout treatment was keeping a journal of my symptoms and questions, so i had it at the "ready" when i met with any of the medical team.  I also brought someone with me.  You may have thought of all of this but there is also some great info. on cancer.ca

http://www.cancer.ca/en/cancer-information/cancer-journey/recently-diagnosed/?region=on

Good luck with your appt. and let us know how you are doing!  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: The journey begins

Posted by merry on Apr 15, 2018 6:58 am

Good morning. Welcome to cancer connection although I wish that we were all connecting for reasons other than cancer. You will find yourself in a blizzard of confusion with ups and downs in the foreseeable future. Bring someone with you to doctor's appointments so they can take notes and give you the emotional support that you need. Try to avoid advice from non-medial people!!  Hopefully your doctor is a good one and will give you all the medical advice you need. Please keep us up-to-date as you go on, if you can.  Best of luck.

Re: The journey begins

Posted by cancertakesflight on Apr 15, 2018 10:29 am

One of the things I have been trying to promote is the use of images and pictures to help fully understand medical information. If you are told so many mm or cm as the size, ask for a comparable sized object. Life a golf ball is about 4 cms. If the doctor has to explain something to you, ask the person to draw a picture for you. It does matter how crude it is, it will add clarity. One doctor drew me a picture and it is one of the things I remember the most nearly 7 years after active treatment.

I am glad that it was caught, and good for you being your own advocate. Sometimes you have to push a little to make the things happen that will help you get better.

Debbie

 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: The journey begins

Posted by LPPK on Apr 16, 2018 9:30 am

Raleigh‍ Sorry to hear of your diagnosis but glad you found this site. One thing that is helping me through my journey is keeping a binder with all the appointments, tests and results, and information given by the doctors. My GP gave me photocopies of tests and result back 8 years. I love the suggestion by cancertakesflight‍ to get a good visual as well as written information. It definitely helped me to advocate for myself when I  have my history binder with me at all appointments. 

Re: The journey begins

Posted by Raleigh on Apr 16, 2018 10:19 am

Thank you all for the great advice.   Tomorrow will be enlightening I am sure when I have my first meeting with the oncologist.   Lots of questions to be asked and hopefully answered.

Re: The journey begins

Posted by Lacey_adminCCS on Apr 16, 2018 10:25 am

Hi Raleigh‍ 

All the best tomorrow I thought this booklet Questions to Ask When You have Cancer might help. 

We are in your corner cheering you on, you have already connected with a great group. Please keep us posted.

Is somebody going with you to the appointment?

Lacey

Re: The journey begins

Posted by Lacey_adminCCS on Apr 16, 2018 10:29 am

cancertakesflight‍ 

I love that suggestion of asking them to draw the size or give you a comparable. It really helps put things into perspective. I would have trouble understanding what a certain measurement meant.

How is the rest of your work going?

Lacey

 

Re: The journey begins

Posted by Raleigh on Apr 16, 2018 10:39 am

My husband will be going with me to the appointment but I will have a lot of people there with me in spirit including this fantastic group.  Thanks for your support .  

Re: The journey begins

Posted by Lacey_adminCCS on Apr 16, 2018 10:44 am

Raleigh‍ 

I'm so glad your husband will be with you. Is the hosptial much a of a commute?

We will be with you in spirit for sure!

Lacey

Re: The journey begins

Posted by Raleigh on Apr 16, 2018 11:13 am

We are about one hour to city limits and then thru the city depends on traffic.  We are getting the rain storm that is  coming up the coast so will leave ourselves lots of time to get there.  Rather be early then late.  A friend offered to go with us but I felt we needed the drive home together to hash over and digest what we learn. 

Re: The journey begins

Posted by cancertakesflight on Apr 16, 2018 1:12 pm

Lacey_adminCCS‍  thanks for asking. I've been trying to tell people to explain information to patients using everyday items as a point of reference and then finally thought I should be telling patients to start asking for pictures or mental images. I sent Cancer Care Ontario a link to the webinar I did called, "Learning Styles and the Cancer Experience" and they asked me to write a short blog post about it for use on both their internal and external blog. It should be there sometime near the end of April. I can post a link when it is available. 

I hope all is well with you.

Debbie
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: The journey begins

Posted by Raleigh on Apr 17, 2018 12:33 pm

Just arrived home from my consultation with the oncologist and radiation doctors.  I have two type of cancer.  They found squamous cells and glandular cells.  Next step for me is an MRI to make sure this is the only place it has developed.   Then the doctors can decide on the plan of attack.  

What a drive in in the rain coming home.   Having a cup of blueberry tea.

Re: The journey begins

Posted by ashcon on Apr 17, 2018 1:31 pm

Hi Raleigh‍ ,

Glad you made it home safe!  Well, this news is likely not what you wanted to hear, but your cancer is now a "known entity". 
I don't know about you, but as soon as the facts and facets about my cancer became known and documented, I started to feel better.  Now you know the enemy.
It sounds like your doctors are on top of things and ready to implement the plan of attack.

That will adddress the physical aspects of your cancer. 
We know, however, that a large part of dealing with cancer lies in addressing the mental, psychological, and emotional impacts.  Not only for you, but for your support network.
How are you doing in those areas?

Reach out, ask questions, and keep us informed, when you're ready.  Sending thoughts your way.
---- "Nothing ever becomes real till it is experienced." ----

Re: The journey begins

Posted by Raleigh on Apr 18, 2018 6:38 am

Anyone have insight on what the the impact of radiation has on the body in the upper vaginal area?  The radiologist talked about 5 weeks of treatment.  He mentioned that it could affect the bowel and bladder.  Just curious as to what to expect in the future.  I am a need to know type person so I can plan ahead mentally.   

Re: The journey begins

Posted by Lacey_adminCCS on Apr 18, 2018 10:20 am

Hi Raleigh‍ 

How was the blueberry tea? I've never had that kindof tea sounds wonderful. You sure earned it after travelling in the rain.

Like ashcon‍ mentioned now that you know what you are dealing with a plan of attack can be put in place. Next will be the treatment plan. I'm so glad you are reaching out ahead to get information about treatment types. 

You may want to connect with other women who have had radiation to the lower abdomen like sundog‍, Ttjia‍, Suzanne73‍, Elsie13‍. 

Here is some additional info from our website: Treatment for vaginal cancer .

How are you feeling today?

Lacey

 

Re: The journey begins

Posted by Ttjia on Apr 18, 2018 1:02 pm

Hi, Raleigh, I had two types of cancer endrometrial and more serious clear cell which is both rare an aggressive I had 5 weeks 5 days a week of radiation, I did experience side effects, the most important thing is get a diet sheet and follow it I didn't at the beginning and was very sick, fine afterwards, Diarrhoea cane also be a problem see if you can get medications ahead of time, when going for treatment  you will probably have   to have a full bladder I personally  found that hard to maintain, the treatment itself I found to be no problem and the staff are great, I am still having a lovely side effect from the radiation a little over a year later, Hope everything turns out well for you, the people on this site will be here if you need them, 
Ttjia

Re: The journey begins

Posted by Elsie13 on Apr 18, 2018 2:43 pm

Hello Raleigh‍ . I had ovarian cancer and they found 2 types of cells: adenocarcinoma and clear cell. I had 25 radiation treatments. In some ways the worst thing is having to travel to the hospital 5 days a week. After 2 weeks I was having diarrhea, and I saw a dietician at the hospital twice, and she gave me a diet that really helped. I didn't have any sunburn or skin problems from radiation. 
 I was lying on the little bed for only about 10 minutes each time.  The actual radiation only took around 90 seconds, I'd say.  (A red light would come on "BEAM ON.")  So yes, about 8 minutes is making sure you're in exactly the right position. 
    Most of the time, you'll likely see the same technicians each day. They become your friends, your buddies. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: The journey begins

Posted by Raleigh on Apr 18, 2018 3:25 pm

A bit of confusion today when I got a call from our local hospital with a CT scan appointment for tomorrow.   Was told in Halifax I would be having an MRI.  On the phone I go.  End result is my gynaecologist here booked the CT when she got info from Halifax  with results from that appointment.  Then when I talked to Halifax they have already sent the request for the MRI within 2 weeks.  I said the more info the doctors have to work with the better off I will be.  I will take any tests they want to give me.

Bottom line things are happening and that's a good thing.   Now if only the weather would warm up so I can get outside and get the yard cleaned up.  Have a great day everyone.

Re: The journey begins

Posted by Vivid Colours on Apr 23, 2018 7:55 pm

A rough start, but hopefully a good outcome. All the best!
 
Vivid Colours

Re: The journey begins

Posted by Raleigh on May 3, 2018 7:09 pm

Today was not good news but better then I was thinking.  I also have cancer in the lymph glands as well as the vagina.   Treatments of 25 radiation, chemo and brachytherapy.   Sounds very intimidating but the alternative, well there really isn't an alternative.  Still I am healthy otherwise and intend to keep it that way.  
Treament should start in about 2 weeks.  

Re: The journey begins

Posted by Brighty on May 3, 2018 7:48 pm

Raleigh‍  i'm so sorry about the news.      I'm glad that you are starting treatment soon though, and hope that you will start to feel better very soon!
Help is out there. All you have to do is reach out.

Re: The journey begins

Posted by Raleigh on May 4, 2018 8:58 am

Thanks Brighty.  I feel fortunate I am feeling well.  No pain or other issues.  I am sure that will change with the treatment but will cross that bridge when I come to it.