new here with IDC

timerdog

I was just diagnosed with IDC NOS 1/3

My margins are not clear and they have also discovered fibrosis "disease". I am so confused and worried as to what I should do. My surgeon ( general ) recommends a removing the breast. I have an appt on Thursday to have this done. Meanwhile I have not even spoken to a specialist. I live in a small town in Ontario and the nearest cancer center is SunnyBrook in Toronto or the cancer center in Sudbury. To make matters worst I am a single mom, lower income and cannot take the time off work to deal with Rads.

Can anyone tell me what "extensive areas of Fibrosis with multiple nodular tissue ranging in size from 0.5- to 0.7 cm" means?

I have never been this scared in my life. I can't make sense of this pathology report.

I guess you'll be seeing me around in this forum from time to time.

Trish 

JanetinVirginia

I know it's scary right now.  I can't help on the pathology report, but consider seeing a breast surgeon at a cancer center if you can arrange to do that.  Take copies of your reports & films.  A second opinion is always a good idea on your pathology & treatment options.  That step will take away much of the confusion and worry.

timerdog

Thanks,

I have already decided to cancel my appt to get a UMX. I will ask for a referral to a BS and then make my next step in a more informed manner.

Every time I look at my 7 year old daughter I start to cry. 

badger

Edited to redact a post with personal information.

flannelette

Hi Trish - I'm in Ontario (Kingston) and had IDC. maybe I'm reading this wrong, but are you saying your general surgeon wants to do - a removing the breast- mastectomy? for which you have an appointment on thursday? not the mastectomy - just to see him about it?

I'm confused about how your margins are not clear, if you've not yet had a surgery.

did you just get the results from a biopsy?

sudbury and Toronto are a LONG way apart. which one are you closer to?  How do you know you need rads? if it turns out you do, do you know that the Canadian Cancer society will drive you there for free every day? -except just how far away from each place are you? Radiation in Canada usually involves 16 treatments, 5 the first week, weekend off, five the second week and so on. If it is a huge distance the cancer centres usually provide a free lodge right by the centre. Many people stay there all week for treatments & go home weekends, with a cancer volunteer driving you  every time. So you would miss 16 days of work for that. That's surely understandable by your employer?

In Ontario most breat cancer centres have Nurse navigators whose job it is to be with you for all your first visits to surgeons etc. They are there to get things straight, for you won't be able to remember everything you're being told., and to support you in practical and emotional ways, and help you understand medical jargon and make decisions. You do not have to do all this alone!

It seems you should be being seen by a surgical oncologist who spcializes in mastectomies in either Sudbury or Toronto - sunnybrook is a GREAT place to be a breast cancer patient. I would imagine Sudbury's pretty darned good, too.

If you skip over to the Canadian thread  - scroll way down the main menu then on to Calling all Canadians - it's an active thread and very supportive and maybe someone's in your area to help you get the scoop.

If you are really freaking out, please ask your dr. for tranquillizers? it's way too hard to deal with all this if you are both on your own and totally gripped by anxiety and money worries. Remember  your whole treatment, including nurses visiting you at home if that's required - will not cost a cent. You will be looked after by your local community health care team who will also cover all medication costs till you are  finished any treatments like chemo or rads.

Rest assured you WILL get the help you need. In the meantime, ((( hugs )))) this is the scariest time......

Arlene

3jaysmom

first, welcome to the club NOONE wants to join. im so glad you decided to wait to see a BS. i would not have wanted a general surgeon doing my BMX it turned complicated, in the middle of surgery, and thank God, i was in hands used to having things change. depending on the path reports, etc. you can decide to proceed. am so glad others in canada have it well in hand. my prayers are with you, sister.     3jays

3jaysmom

good luck with your decisions... 3jays

timerdog

Hi Trish - I'm in Ontario (Kingston) and had IDC. maybe I'm reading this wrong, but are you saying your general surgeon wants to do - a removing the breast- mastectomy? for which you have an appointment on thursday? not the mastectomy - just to see him about it?I'm confused about how your margins are not clear, if you've not yet had a surgery.did you just get the results from a biopsy?sudbury and Toronto are a LONG way apart. which one are you closer to?  How do you know you need rads? if it turns out you do, do you know that the Canadian Cancer society will drive you there for free every day? -except just how far away from each place are you? Radiation in Canada usually involves 16 treatments, 5 the first week, weekend off, five the second week and so on. If it is a huge distance the cancer centres usually provide a free lodge right by the centre. Many people stay there all week for treatments & go home weekends, with a cancer volunteer driving you  every time. So you would miss 16 days of work for that. That's surely understandable by your employer?In Ontario most breat cancer centres have Nurse navigators whose job it is to be with you for all your first visits to surgeons etc. They are there to get things straight, for you won't be able to remember everything you're being told., and to support you in practical and emotional ways, and help you understand medical jargon and make decisions. You do not have to do all this alone!It seems you should be being seen by a surgical oncologist who spcializes in mastectomies in either Sudbury or Toronto - sunnybrook is a GREAT place to be a breast cancer patient. I would imagine Sudbury's pretty darned good, too.If you skip over to the Canadian thread  - scroll way down the main menu then on to Calling all Canadians - it's an active thread and very supportive and maybe someone's in your area to help you get the scoop.If you are really freaking out, please ask your dr. for tranquillizers? it's way too hard to deal with all this if you are both on your own and totally gripped by anxiety and money worries. Remember  your whole treatment, including nurses visiting you at home if that's required - will not cost a cent. You will be looked after by your local community health care team who will also cover all medication costs till you are  finished any treatments like chemo or rads.Rest assured you WILL get the help you need. In the meantime, ((( hugs )))) this is the scariest time......Arlene Hi Arlene,I live in Parry Sound Ontario and my Dr. is about 80 years old, lots of experience but little to no bed side manner.  I am about 2 hours from Toronto and 2 hours from Sudbury.  Yes, he wants to do a mastectomy  on the 23rd as  he was unable to remove all the cancer during the lumpectomy that he did on the 9th. It was actually a biopsy but he removed the entire lump. The margins are very close 0.1mm. I have no idea what stage I am at as he did not take the lymph nodes, I can't even tell how big the lump was from the report as two were removed and the larger one was labeled "fibrofatty" I have no clue what that means.  I do not know if I need rads as I have heard and read the with a MX you do not need rads. To complicate things further I have saline breast implants and my Dr. says he is not comfortable removing more breast tissue because of this.I am seeing a different Dr. on Monday so she can give me more insight into my situation.Basically what I go from the 80 year old surgeon was "you have IDC and the best course of action is a MX". It took all of 7 minutes.I'm really happy you posted Arlene, it helped to relieve a little of the strain on me.I'll go over to the forum you recommended.Thanks again. 

flannelette

Yikes! Trish. this may be what happened decades ago, but it seems your dr., experienced as he is, is kind of stuck in the past. I only know from my own experience, but i do believe he needs to see if your nodes are involved etc. in order to know what stage you are and therefore how you should be treated. maybe in olden times they just chopped off a boob and assumed all was fine? i am so glad you are going to see another dr. tomorrow! You need to know the size of your tumor, you need to know if cancer appears in the nodes. I gather he's just taken it upon himself to decide you need a mastectomy and rads. How does he know you don't need chemo?

Not to put your dr. down - he may indeed have years and years of practical experience but - going into a local hospital  for a biopsy and coming out with a lumpectomy that didn't really work and then having  to have a mastectomy a few weeks later sounds too bizarre for me. They have centralized cancer care, now.

or maybe i don't know anything...........

but I'd say - don't ever see that dr. again.

Arlene

timerdog

My thoughts exactly! They have not taken any lymph nodes ( to the best of my knowledge ) and the staging is not marked on the pathology report. The only thing that is noted is that the cancer is grade 1 meaning it is a slow growing cancer. To top it all off I had this lump US in 2008 and they said it was "normal breast tissue" I thought it was being monitored as I always went for a yearly check up. Ha not so. Lesson learned on my part.

I do not plan to see my surgeon again, he will just scare me with his manners and forceful "if you don't listen to me" attitude. I am not against having a MX, I just want all the facts before I decide my course of action.

Thanks for the support, now if I could just stop crying a few hours. 

BarbaraA

{{{Timerdog}}}} do NOT let the surgeon bully you into doing something you are not comfortble with. Just get the 2nd opinion and go from there!

flannelette

Trish - No wonder you can't stop crying. You've been manhandled by someone from prehistory. Cancer centres are supposed to be doing all this. With kindness, and the assumption that you participate in all decisions.You are supposed to be being taken of, not bullied or scared. You should  have a cancer team who meet you and shake your hand and introduce themselves to you by their first name! even, and especially, the surgeon. They should be trying to take away your fear and not create it.They should feel so good you have complete faith in them, so your mind can rest and your body can heal. 

I keep shaking my head in disbelief that this guy is practicing as though it might still be the 1940's and he hasn't woken up to the fact that there are now cancer experts called oncologists.......as a matter of fact, I have to wonder why this guy is still practising.

And once you've seen the other dr, phone the Canadian Cancer society to find out about drivers for whatever it is you will have to do in Sudbury or Toronto.....you should not have to go there alone. And if you need to take your child with you they will drive her too.

You are one smart cookie, for finding this site, and posting. you are not alone. Nor should you be.

You should be supported every inch of the way, and you will be, once you are on the right track.

((( big hugs!! )))

Arlene

 

timerdog

Arlene,

Where did you have treatment? My Dr. is already getting miffed at me for insisting I do not want treatment here.

I am sticking to my guns and will be either in Sudbury or PHM in Toronto.

Thanks 

flannelette

Hi Trish - which dr is getting miffed? the old surgeon, or the new one you were going to see. What sort of treatment does the Parry sound hospital have? radiation? chemo? oncologists?I find this all so archaic that I just phoned the Breast Assessment clinic in Kingston, where I'm a patient at the cancer Centre of Eastern Ontario. The receptionist is asking one of bc unit nurses to phone me -maybe she'll be able to give us a phone # at the breast centres at Sunnybrook or sudbury and you can speak to a person who lives in the 21st century.The receptionist was just as flabbergasted at all this as I am. won't hear till tomorrrow, though. Hang in there, I do not believe there is any incredible urgency to start in again on your poor breast

Arlene

flannelette

TRISH - I sent you a private message. When you log in, look for the private message button and it shuld show up.

Arlene

Kyta

Hi Trish - Sounds like Arlene is giving you lots of good advice. I live in Ottawa. I just wanted to echo that it's really important for you to completely understand your pathology and options before committing to anything. Your surgeon should be spending some time with you to discuss your situation and to make sure you have all the information you need to make informed decisions. I know it's a terribly scary time, but you should be leaving a breast surgeon's office feeling confident that you're in good hands! I had a uni mx when I was diagnosed (and recently a prophy on the good side), and would be happy to share my experience. Feel free to send me a private message if you want to chat.

Also, as Arlene suggested, the Canadian thread "calling all Canadians" is very active with lots of caring women that would be happy to provide you with support and advice.

Take care Trish......Mich

hrf

Trish, I agree that Arlene is giving you good advise. Your dr. is living in the past!!!! Sunnybrook is great. All the specialists are there and they give you detailed information about your pathology, your options and recommended tx. It is most important to have a qualified breast surgeon do a mx because it takes a lot of skill to do it correctly. Additionally you need to have a sentinal node biopsy done to determine staging. Please get yourself to a cancer centre and you will get excellent treatment. Don't let this other dr. bully you and scare you!!!! Once you have a tx plan -- IF you need chemo, that can probably be done locally. The rads might require some travel but I think Arlene explained clearly how it can be done. Best wishes.

kelben

Hi timerdog:  Welcome to this site.... I am from Huntsville and my general surgeon did my mastectomy.  She was wonderful!!! She got all the lump with nice wide margins.  The surgery was not bad at all.  I was in hospital overnight, home the next day, and had homecare 3x's a week until all the drains were out and the scar was healing nicely.   I had  IDC and opted for the mx rather than the lump. because i didn't want rads.  I was sent to Sudbury to a med. oncologist and he sent the script for the chemo tx's down here to our cancer clinic... easy as pie.   I have to go back up to Sudbury for a checkup, but the treatments will be here along with my mammos, ct's etc.   I can't tell you what to do, but your gut will give you pretty good hints, and I felt very comfortable with my surgeon.

micheleboots

Hi Trish...just jumping in here...I am jumping in from "calling all Canadians"  ..I agree, arm yourself with as much info as you can before making a decision.  After all you said your cancer is slow growing so don't feel like you have to make a decision today or even tomorrow..Your best weapon to beat this, is knowledge.  Feel free to pop into our thread and chat...

misfit

timerdog - My first surgeon was old school like yours and I did not get along with him at all. He ended up sending me to someone else which worked out great. It's really important that you get that second opinion, you need to be comfortable with the surgeon who is operating on you. Please don't let anyone rush you or bully you into making a decision.

I was living in that part of the country when I was diagnosed and ended up moving to Vancouver after surgery. I had many reasons, but the radiation situation was a big one. I would have also been looking at spending mon-fri in Sudbury for a month. I'm finished now and I can tell you that I was at the cancer center here for at most 1/2 an hour and had the rest of the day to myself. No offence to anyone who lives in Sudbury but if I had to choose between there and Toronto, I'd probably go with Toronto because there would be more to do in my free time. Of course you may end up not needing rads.

You may not have the whole picture for a while yet. You won't know your stage until your surgeries are done and they've checked your lymph nodes. If any are positive you will likely need to have a few scans done as well. Have your receptor tests come back? Those results will give you more information as to what kind of treatment to expect. I had a bit of a meltdown when I got mine because of the Her2+, which in hindsight was a real overreaction given what I know now. Just in case you fall in to that category too...don't worry. There's even a forum here for that. This is a great place and there are many extremely knowledgeable women who can help you get through this. What an awful thing to have to deal with just before Christmas. I hope things get better for you soon.

timerdog

Thanks for all your replies and well wishes.

My surgeon in Parry Sound is Dr. Hunt, he is very old school and has the bed side manner of a gnat but he is an excellent surgeon and has done many MX's. I spoke with my family Dr. yesterday and she and her partner ( Dr. Garrows had a Double MX from Dr. Hunt ) both suggested I get the MX done on the 23rd. Dr. Hunt was unable to get all of the tumor out which measured 5.5 cm at its max dimension. Dr. Warwick ( my family Dr. ) also said there was nothing good about my situation no chance of saving the breast. The tumor is multi-focal meaning it spreads out.

Dr. Hunt will also do a SNB which only recently became available here in the last year. I will know then if it has spread to the lymph nodes which judging from the size of the tumor it probably has.

Misft,

No, it doesn't say anything in the report about receptors. I think it is estrogen driven though as I recall Dr. Hunt been given a sheet of paper while I was in the room. I will get a copy of that this afternoon for my file.

I guess if there was a bright side to all of this is the fact my sister is flying out today from ALberta to stay with me for a week. My dad is also spending time with me after she leaves. My dad also said "not to worry about money". Which is a great relief.

After the surgery I will either go to Sunnybrook or Sudbury for treatment.

I keep saying to myself "one in nine women go through this, so can I ". 

misfit

It's great to hear that you have family around to help you out, that will make things much easier for both you and your daughter. It's all so overwhelming in the beginning. Things are probably pretty hectic if you're getting ready to have surgery on Thursday but you'll have a chance to process everything while you recover and hopefully you can post here when you have questions or need any words of encouragement. Feel free to PM me anytime, I know there is a post limit for new members but I think you can send as many private messages as you like.

AmyIsStrong

Sending strength and support from your neighbors to the south! 

I am glad you are getting so much help from your Canadian sisters, as they will know your medical system much better than us down in the US.  And I am SO GLAD your dad said those magic words to you about the money.  That is a lot of peace of mind contained in that one sentence!

Now two things - re your daughter - I know it is scary now, and difficult, but TRY to take the strong love that you feel for her and transfer it into determination to be strong and fight this with everything you have so that you can live a long, healthy life and dance at her wedding and be the grandma to her children. Keep those images firmly in your mind and they will help pull you through. Don't let your mind go to thoughts of dying and leaving her alone. You have lots of treatment options ahead of you and for many/most women, they work and we survive and go forward in life. I hope this isn't offensive to say. But I know how hard the beginning is, and you really need to conserve your emotional energy for the challenges that lie ahead, as best you can.

(Of course it is ok to cry - I'm not saying not to cry at all. I'm just saying that the mother's love you have for her carries with it a lot of energy and passion and can be channeled toward your treatment and provide a strong motivating force.)

I wish you the best.

Amy

rachel5738

Hi Trish--Looks like you have lots of advice now but just to add--I have two young boys and I found that the best route was honesty. We told them about each step and explained it--there is no question that it is hard but once they understood what was happening--it made it easier for them.. As Amy mentioned above, there are lots of treatment options and although it feels overwhelming--you will get lots of support once everything is in place and it will help you through. It sounds as though you have lots of missing information--or parts of information--once you have all the information and all the pathology report explained--you will then have a treatment plan and once you have that--things seem a little easier (at least it did for me). When you don't know and are sort of in that place where nothing makes sense--that is when you feel the worst--the waiting is horrible but again, once you have everything and a treatment plan--you will be surprised at how you can just focus and get through it. Take care, Rachel