Surgical intervention for Papillomatosis

I’m new to this forum but wanted to start a new thread about papillomatosis, as I can’t find much information about it. I am 38 years old and last December was referred to breast clinic for breast pain and discharge in left breast, where I also have an inversion, but have had this since puberty. A 5cm mass was found on the upper outer area of the breast which was also seen via mammogram. I was asked for a biopsy to take place that same day. It came back benign 1 week later. However was asked to also have an MRI on the area which I had 2 weeks later. The MRI confirmed the large mass and also a smaller one underneath the breast. Again I was asked to have the original mass biopsied again this time using a vacuum biopsy and a fine needle biopsy of the smaller mass. 1 week later, they both came back benign. I was diagnosed with Papillomatosis. I asked about removal but was told that they wouldn’t remove papillomas as it would cause scar tissue which would make any subsequent cancers difficult to spot on a mammogram and that Papillomatosis could be a Pre-cursor for cancer. I was told that I would have a mammogram and MRI alternatively every 6 months for 5 years to monitor Any further changes. I was happy with this course of action. However one month later I relocated from Hertfordshire to Devon and after waiting almost 3 months to be introduced to a new breast clinic I was told that they would not offer me this kind of imaging as they did not do it in this county. At this point I was already a month late for my next lot of images to be done. The new breast clinic didn’t even have copies of my old images or biopsy results I was told that if I wanted to continue with the imaging I would have to go back to Hertfordshire, the area of concern was palpated but I was not offered any further imaging. On calling the breast clinic in Hertfordshire I was told that I had been discharged and as I was no longer local I could not have my imaging done there. It left me feeling in limbo. After weeks of making phone calls and trying to get all of my old imaging sent to the new breast clinic they have now finally received it and reviewed it. After viewing the images for themselves they are now finally taking my situation more seriously. Yesterday I received a letter saying that they would like to offer me surgical intervention but that this was dependent on my biopsy results being retested. They have now requested my biopsied tissue samples from Hertfordshire to be sent to the breast clinic in Devon to be re-tested. This has left me confused, one clinic says that they will not remove the papillomas where as the other clinic is suggesting it. I also don’t understand why they want to retest the tissue that has already been biopsied what could they be retesting it for? Surely it has already been tested for everything and the new clinic has a copy of the biopsy report. Could they be retesting it for cancer? When I spoke to my old breast clinic they said they have never known for tissue to be sent for by another clinic to be re-tested. I have already been made aware that the mass is quite big and removing it would leave disfiguration. What means would they use? What does surgical intervention mean? Is the mass to big to be removed by lumpectomy or could they mean mastectomy? I have called the clinic but they won’t tell me anything further, they said they are waiting for the old tissue samples to arrive so they can review them further I will then receive an appointment to discuss the kind of surgical intervention on offer. I feel like I have waited so long since my last mammogram and MRI which is now 7 months ago, I just want someone to explain things to me. It is very confusing being told 2 completely different things by different clinics and I don’t see how my address has anything to do with the treatment I receive. I would love to hear from anyone who may have experienced anything similar or who may have had papillomatosis removed and how it was done.
Many thanks in advance
Katie (feeling confused and anxious) xx

 

Hi Katie

 

My Consultant is almost sure I have a Pappiloma, which he will be removing in the next couple of weeks.  There is a big difference in age between us …I am almost 73.  I put my story on another thread under the heading “bleeding nipples” . If you can’t find the thread which I posted earlier today, I will find it and copy it to you.

 

love and best wishes xx

Crikey Katie, I’m not surprised you’re confused!
As ever, its the communication & similarly different policies & procedures each health Trust has that’s probably behind this.
I dont have your diagnosis, but it would seem that until you have the appointment & are able to discuss this, it’s all a bit in limbo at the mo. You obviously need to be clear what the surgical options are, so hopefully, this will be clearer once you have had the appointment.
It might be an idea to post in the ‘ask our nurses’ board, or do give the helpline above a ring, if you need to talk it through.
If you want to, do let us know how you get on.
ann x

Hi Feather1944
Thanks for your reply, I have searched for your earlier post but can’t find it. I would be grateful if you could copy and post again here.
Did your consultant make a plan to have it removed straight away? I find it strange that my consultant didn’t make a plan to do the same thing, I have Papillomatosis which is many Papillomas joined together, I believe there have to be more than 5 papillomas together to be papillomatosis. From what I have read it seems that papillomatosis can be more inclined to lead to cancer in later life. Almost all cases I’ve read about have had the papillomas removed, I just dont understand why they decided to leave me be and with moving I’ve just lost more time. I have been back to the Dr’s 3 times since I moved with sharp pain and now also a stabbing pain under my armpit and numbness down my arm. 3 appointments before I even got a referral to the new breast clinic in Devon. I’m feeling like I’ve been lost from the system and now that they are finally aware of me again I don’t understand what they are telling me and I just have to wait even longer for tests to be done on the biopsies that were already taken in December of last year again. I guess I’m just feeling frustrated and anxious.
Good luck to you, I hope it goes smoothly for you.
All the best
Katie xx

Thanks for your reply ann-m
Yes, you are right. It’s the waiting that’s the hardest part.
Just looking forward to getting another appointment to discuss it further.
Katie xx

Just thought I’d tell you my story: ( to reassure others but please remember, everybody is different)
I am almost 73 years old.
Since about March this year, I have been finding odd brown spots in the right cup of my bra. I knew it was blood but thought that I had scratched myself or something like that. This happened on and off until one evening after a long day,(28th June), I took my bra off and was shocked to find almost the whole of my bra (right cup) with splashes of blood. Saw GP on 30th June, who examined me, found no lumps at all , but noticed a bloody discharge from my nipple. She sent an immediate referral to Breast Clinic. I did not hear from anyone, so I rang ‘first appointments’ on Monday,10th. They gave me an appointment for a mammogram on 12th July, when I was told that the results would go to my allocated Consultant, with who I had an appointment Thursday , 27th July.
i was relieved to hear that there was no sinister findings on my mammogram…Consultant examined me , found no lumps and reassured me that he was almost sure that the cause of my bleeding, was almost certainly a Pappiloma. This is benign. However, he said he will arrange to have it removed and send a sample to be analysed and confirm diagnosis. He was very confident. Although I had hoped for the best, I also prepared myself for the worst. I was so numb, I couldn’t say much…I just said “Thankyou Doctor”
I am now awaiting a date for the op.
The reason for sharing my story with you is to reassure you that bleeding nipples do not automatically mean cancer, but also urge you to see the GP as soon as you notice any odd brown spots / stains in the cup of your bra.
P,S. I still see blood stains in my bra. The Consultant said that it would stop once the papilloma is removed
Love and best wishes to everyone on this site. I have received such kindness and warmth from members over the past few weeks…could not have coped without this great Site. THANKYOU

Katie, what a journey you’ve had! I’m not surprised you feel confused and anxious. I’m sorry I don’t know anything about your condition, so just sending a big hug. X

Thanks for sharing your story Feather1944. Good luck with your op. Xx

 

Katie,

 

You seem to be more informed than I am. I didn’t know about papillomatosis.  To be honest, I was quite numb at the Appointment, I didn’t ask him any questions.  I was in a total haze.  

From what you’ve said, the mass in your breast has been diagnosed as “benign”… that’s good to know, but I can understand the confusion regarding surgery.   As Ann has suggested, call the Helpline and get their opinion as well. 

 

You have come to the right place…you will get a lot of help and support from here.

 

Hope it all works out for you…one thing you can take comfort from, is that all images and biopsies show that they are benign. 

 

Lots of love xxx

Hi Feather
Yes, I’m obviously thankful that the biopsies have come back benign, just confused what they need to test it again for. I think I might call the helpline, may put my mind at ease a bit more.
Thanks all xxx