Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Mammograms and PAPs

female issues

  • Please log in to reply
9 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 06 April 2015 - 02:31 AM

I am wondering how many of the females with scleroderma have had abnormal mammograms or PAP tests.

 

Over the years I have had several of my PAPs come back with abnormal cells, starting in my 20's. I have had biopsies and my cervix has been frozen twice, but so far not cancerous. I just had another abnormal PAP and have been retested, no results yet.

 

I had a mammogram come back abnormal about 15 years ago, went through testing and ending up having a stereotactic (needle) biopsy. It was determined I had cystic breasts, no cancer fortunately.

 

I know both of these issues are common in all women, not just those with scleroderma but am curious.

 

Thanks for responding. 

 

miocean


ISN Artist

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 06 April 2015 - 06:41 AM

Hi Miocean,

As a matter of fact, just before the last holiday period, I did undergo a similar biopsy such as you describe. I'd suffered a rather strange pain in my armpit going down to one breast and being of a paranoid nature, I thought it best to get it checked out. I expected it to be over very quickly and so was a bit concerned when it was insisted that I had a mammogram and biopsy. However, I was very relieved after the result came back and there was nothing sinister there, as I had had a few nasty moments, when they couldn't at one point confirm that it was nothing. The biopsy went into the lymph node in my armpit and thankfully that and the mammogram were normal and clear, although like you, they said that the breast tissue was quite naturally dense.

We do have a medical page on Cancer and Scleroderma and regular cancer screening is recommended for people who have systemic sclerosis due to 75% increased risk.

I would say to anyone who is at all worried about anything like this to get it checked out as soon as possible and then if the worst does come to the worst, at least any problem can be dealt with sooner rather than later.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 06 April 2015 - 09:58 AM

Hi Miocean,

 

That's a really good question regarding abnormal mammograms and PAPs.

 

As it happens, about 40% of mammograms show up with some sort of abnormal result, and due to this I figure at least 4 out of 10 of my mammograms will have some sort of issue.  I am seldom disappointed by this expectation, as fibrocystic changes often drives them around the bend, and I am always having to reassure my new primary care doctor that such-and-such on a manual exam is perfectly normal for me and nothing to panic about. 

 

Since, as Jo so aptly pointed out, there is an increased risk of cancer with systemic sclerosis, we can't take anything for granted, even though we also need to take everything with a grain of salt in order to keep our heads on straight, as we have to deal with so many more tests -- and test results -- than the average person.

 

I do wish I had a dollar for every woman I encountered in the imaging waiting areas, who were panic stricken and often in tears over needing to have their mammogram retaken or who needed further testing. It seems the clinics I've been to don't bother to explain that is a NORMAL part of the process and that very few abnormalities are truly abnormal and cancerous, in the end. Us folks with chronic illness are used to the drill, and accustomed to all sorts of false alarms, so we tend to develop a lot more coping skills.  But my goodness, even the slightest issue can, understandably, throw a perfectly healthy person having a routine exam into a total tailspin.

 

So yes, most of us should have experienced some abnormal test results, and then on top of that, there would be more abnormal test results that are eventually determined to be more significant, among scleroderma patients, although this would also remain as just a small sliver of those who flunked the initial screenings.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 quiltfairy

quiltfairy

    Silver Member

  • Members
  • PipPipPipPip
  • 165 posts
  • Location:mapleton , Iowa

Posted 06 April 2015 - 02:20 PM

Normal mammogram, what is that? Have never had one, and due to the results I have had 4 non cancerous cysts removed. I have always had normal pap smears, but I have also had a lot of yeast infections. They just drive me crazy so I guess it is different for everybody.

I have also had two Cysts removed from my ovaries and lost a ovary with the last cyst as it was the size of a navel orange. I seem to have developed what my doc calls non cancerous cysts all over my body. They are not very large but the doctor is watching them and in the last few years I have started to develop a lot of moles. None of them cancerous but it is quite frustrating because everytime I go to my GP she sees something else.

I stopped worrying about cancer. If I still worried about it my head would be spinning constantly. I simply have things checked out and then if there is something I will worry then.

#5 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 06 April 2015 - 02:48 PM

Hi Miocean....most cervical cancers are caused by the HPV (?) virus. Your immune system is compromised, right?  That may explain the repeated atypical/abnormal PAP smears.

 

Just a thought,

Margaret



#6 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 07 April 2015 - 04:11 AM

I was also a DES baby as my mother took Diethylstilbestrol to maintain her pregnancies with my sister and me. Because of this I started having PAP testing at the age of 18 and I believe I even went twice a year until I was 30 so the chance of an abnormal test would be higher anyway.

 

Interesting, in reading the linked article it mentions autoimmune issues although no specific link has been made.

 

miocean


ISN Artist

#7 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 07 April 2015 - 11:50 AM

WOW....DES means an increased risk for a specific type of vaginal cancer.  HPV is usually cervical cancer.  Cards aren't in your favor, are they?!?!?  :emoticon-dont-know:

 

Take care,

Margaret



#8 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 07 April 2015 - 01:50 PM

Hi,

 

It seems that there is always at least one contrary situation on this Forum for any subject we seem to bring up.  Me - I have never had an abnormal smear or mammogram result.   In the last year I discussed with my GP whether I should continue with these tests.    Her question was of course "how many abnormal results have you had?"    When I said none she just agreed that it was a bit pointless at 71 to continue.

 

The only person in my recent family history i.e. back to mid 1800's to have had a "female" cancer was my late sister who died in 1999.   She had the whole family's share.   Three separate cancers over about 10 years, Thyroid, Breast and Ovarian.

 

There seems to be no reason for some things.

 

Judyt



#9 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 25 April 2015 - 05:19 AM

Just a quick note: my PAP re-test came back normal, which has been the pattern in the past. Good thing I have learned not to panic when they come back abnormal.

 

miocean


ISN Artist

#10 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 25 April 2015 - 09:11 AM

Hi Miocean,

 

I'm really pleased to hear that your PAP re-test came back normal; what a relief for you!!

:emoticons-clap: :emoticons-line-dance: :emoticons-clap:

 

Best wishes,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)