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Hi,I am reading my part of my biopsy report which said I have IntraductalIntraductal papilloma Carcinoma, it also said that I have high nuclearNuclear ventriculography grain with necrosis (from the fragments).
My doctor said that it was DCIS and is very slow growing and would take a long time to get any bigger, but from what I have read on the internet, it seems like I have the more aggressive strainStrains . I have a month to wait for my operation (or maybe two - have posted you before on this), but I need to know will it grow and invade in five weeks from now???????????
Thank you.
ps - how are people managing to stay calm and controlControl Control rx with all this????????please tell me!
Hazel
You are right that DCIS associated with necrosis has a greater chance of recurrence than DCIS without necrosis.
The management usually involves lumpectomy with clear margins and regular follow ups to assess the progress.
It will not grow invasive in 5 weeks, but you still need to talk to your surgeon about an earlier date for surgery. Ask him/her about the delay, and also about the DCIS with necrosis that you have.
It is important that you remain calm, just for the reason that you need to think rationally right now, and that only happens when you are calm.
Thank you for your last post back. I have managed to get my operation brought forward to two weeks now after a great deal of stress and debate. During my waiting time, I have started to feel strange sensation in the area of the DCIS - like nettles, and nipping, could this be the DCIS?? Also, what is a reasonable waiting time for DCIS from the suspicious findings on the mammogram, through to biopsy,through to the operation??? Thank you in anticipation.
Hazel
The waiting time is variable and depends on the stage and invasiveness of the cancer, the age of the patient, other risk factors and availability of the surgeon.
The symptoms you describe sgould be brought to the notice of your doctor.
You should also talk to your doctor in detail about the surgical procedure in detail and clear out any doubts that you may have.
Do keep us posted about the surgical plan and your doctor's advise.
I just wanted to update you on the surgical plan and my last post to you. I had a lumpectomy on the 5mm of DCIS - waited three weeks for the results and was called in to be told that it had 1mm of invasiveness in the margins, the doctor said he could do another margin removal - I told him to do a mastectomy instead- I knew it had turned invasive, as I mentioned in one of my posts, I could feel it nipping etc, anyway, I went in a few days ago and had a radical mastectomy and have to go in again for my results in one weeks time. I now have no lymph nodes and the numbest of sensations. I dont know as yet whether I will have chemo, radiation or hormone treatment. What is the normal treatment for someone who had a radical mastectomy for someone in my situation? - I am 47, had 4 children after the age of 37, mother died of bc, mine was High Grade with Necrosis - what are the chances this will come back in the chest wall or the other breast???????? my doctor said that I should have a good prognosis - I asked what his interpretation of a good prognosis was - and he replied cured - but there again he also said at my first meeting that my cancer was slow growing - and three/four months later I am sat here breastless on the right after having broken my childrens hearts and doubting every comment that is made medically to me!!!!!!!!!!!
The normal treatment is to follow-up surgery with some adjunctive treatment like chemo/radio/hormone depending on the biopsy reports and receptor status.
It is difficult to predict someone's chances but usualy DCIS is considered to have a good prognosis and mastectomy would help you to a great extent.
Your doctor would wait till the biopsy report from the mastectomy comes in to make any judgements on the form of adjunctive treatment and your chances.
I am sure that being a child of a Breast cancer patient you would know the importance of keeping high spirits as well to keep talking to your doctor regularly.
Keep us posted on your reports and your well being.
I just got back from the hospital and questioned one of the nurses regarding an expression that the doctor had used to me after my mastectomy, he told me that he had seen MULTI FOCUL ...............................I didnt hear the whole sentence, but when I questioned the nurse about it, she said it could mean that there are specs of cancer in different areas of my breast. If this is the case, then they may have been found over a month ago when I had my intial lumpectomy, also because I was told after the biopsies that what they had found was HIGH GRADE NUCLEAR WITH NECROSIS - I checked up on the internet and found that all these ingredients of what it seems I have - have the worse prognosis of all. Is this true, or do I still have a lot of hope after this mastectomy and other treatment. I am so full of fear!!!!!!!!
Like i have mentioned in my previous posts - DCIS with high grade necrosis is does have a higher chance of recurrence - but the fact remains that it is still DCIS and that is supposed to have a fairly good prognosis after definitive treatment.
Multifocal does mean multiple lesions or multiple sites being involved - but for a better clarification it would be best for you to talk to your specialsit in detaila nd clear out all the doubts that you have.
Let us know how you are doing and also about what your specialist advises.
please be patient and speak to your doctors. Be admimant about want to know information. We all fear the unknown so try to get as much info from your doctors. I too have DCIS with microinvasion and the same high grade cells as you have along with Her2Neu 3+. I too am trying to gather information. I too have 3 young children (10months, 6 yrs, and 10yrs). You are not alone. Do not rely too much on what's on the internet you will drive yourself crazy as I have. Some of the studies are not from reliable sources and may be outdated. Take one day at a time.
Hi, Thanks for your post. It sounds like we do have the same sort of situation, not sure though if I am HER2????? I just know that I am hormone positive - I will find out tomorrow from the results of the mastectomy. I have driven myself crazy on the internet too, I am never off it. People keep telling me that too much knowledge is a bad thing, but I feel that I need to know as much as I can to help me deal with it - sounds like you are just the same.
Will post my results tomorrow. Whats your next step?
I wish you the best too.
Hazel
Just to let you know I got my results today - the breast taken was cancer free, the multi focal presence was negative, the lymph nodes were negative and I have an excellent prognosis. They must have got everything with the lumpectomy I had 2 months ago, - though they did say there ws 1mm of microinvasion, so I am a bit unsure if that was taken then or with the mastectomy. Now I go on Tamoxifen for five years - bit unsure of this though as I hear that there are now better drugs than this one.
I don't know much about Tamoxifen except that it's used if your estrogen positive. It's commonly used to help decrease recurrence if your estrogen positive. I'm negative for estrogen and progesterone. The website that I have found most usefull is the John Hopkins website. It's better than surfing the web and getting wrong info,,,,it can cause alot of anxiety.There are question and answer forums on it. A breast cancer survivor who is a nurse and has extensive knowledge about breast cancer runs it for free. At various times you can e-mail a question about your particular case and get a response. Sometimes it's helpful to read previous posts because they may pertain to you too.
I followed up with Tamoxifen... seemed to have done the trick so far. Have heard of newer anti-harmone drugs. Would also research on it.
Did not have any probs with Tamoxifen.
Your relief must and should be immence!
How is your husband doing?
Yes, the relief is immence, I cannot believe i am the same woman as this morning.
Thanks for asking about my husband, he is not so good at the moment, he has FOCUL SEGMENTAL GLOMULARSCLEROSIS and has also developed Diabetes, on top of which he has caught a bug - its been very scary having both us parents down for the children. He is back at the hospital on Friday - he is over the moon though about me, I am very lucky to have such a good man.
Hi, hope you are well. Just to reply to your last post - I am ok (I think), I was supposed to see the Oncologist and Radiologist, but ended up seeing the top doctor and two nurses instead - He said I was cured, as had my surgeon, so I havent seen anyone else. My first check up after all this is on Wednesday 11th June - four months after everything - in my mind, this is very late on, and I am very mad that I havent seen an Oncologist because there was invasion - so I am back to a panicking state and need reassurance and I feel I can only get that after more testing. I dont understand how I can be told I am cured - is this possible?? I have been given so much false information that I have absolutely no trust and everything I am told, I need to clarify.
Best wishes,
Hazel
As far as cured...I was told that term never applies to cancer, they used to use that term in the old days. If you had DCIS with microinvasion, as I did, you do have a good prognosis but you should be watched closely as I am. Plain DCIS has a favorable prognosis and DCIS with microinvasion is only slightly more serious but your nodes were taken so changes of the cancer spreading are very slim. For this reason you should have regular visits with your onoclogist. Right now I'm pressed for time but will go into more detail later in a later post, just remember you do have a very good prognosis and focus on that. Also, I believe that Cheryl Crow had DCIS with micro and she seems to be doing just fine ;+)
Hi Liz, Thanks so much for your post back, I am getting myself in a bit of a panic as I have lived in fear of breast cancer since my mum died of it back in 1989, it was very aggressive and brutal that the memories have never left me, then I expected to get it - which I did and it knocked me for six especially having four children - I just need some more tests doing to be reassured. I am also concerned that I havent been granted an Oncologist, so will strongly question that on Wednesday
What grade was your DCIS/micro?? mine was grade 3 with necrosis, and how long ago did all this happen for you?
Thanks Liz, hope to hear from you soon.
Hazel (hugs back)
I think that we communicated b/4 back in March. I had DCIS with less than 1mm of microinvasion (stage T1mic), Lumpectomy with re-excision to obtain wide margins, negative sentinel node biopsy & 33 radiation tx's which I finished 3 weeks ago. My cells were high grade (3) with comeo necrosis. Being high grade, hormonally negative & Her2+++ is a very agressive form of cancer but also caught VERY early. I ended consulting with 10 oncologists because I was Her2+++, I wanted to be sure that I didn't need chemo and ALL agreed that the risks of chemo outweighed the benfits for me. I was told that the majority of DCIS is Her2+++. I've had CT scans of my head, abdomen, chest, & pelvis. She also did a bone scan. Both scans were performed with & without contrast. I've also had a CBC done & will do every 3 month but she does not do tumor markers. Normally scans are not routine for early stage breast cancer but my oncologist is very thorough & agressive. I am followed by her every 3 months and will be seen by my surgeon every 6 months where I will have a mammogram & breast MRI done. Since I had radiation, I will also be followed by my radiation oncologist every couple of months but not sure on the frequency yet. My gyn who is my primary also wants to see me every few months just to be sure I'm doing OK. I also decided to see a naturalpathic physician who came highly recommended by my breast surgeon to be evaluated on my diet and to determine if I need any supplements to decrease my chance of recurrence. I'm trying to be proactive and take control of what is in my control... Soooooo.. that's the run down on me.
It's understandable that your anxious, I too get very anxious and have 3 young children 11, 6, & 1 yr old. You were traumatized by your mother's experience.... is that what you want to do to your children? Ofcourse not.....Children are very intuitive & pick up on feelings. You need to focus that your cancer was caught VERY early and that you do have a good prognosis. Medicine has come a long way since your mother's days. Be vigilant and make sure that you feel comfortable with the doctors that you see. If you don't, find doctors that you feel are providing the care that you need; emotionally & physically. If you don't take care of yourself and your needs, nobody else will. Be proactive, I've heard of people having 5 cancers and are doing just fine because of early detection. In April, I too was diagnosed with skin cancer but caught very early & had surgery to remove it. It's healing very slowly but the doctor said my body is runned down but I will be fine.
Keep in mind, your prognosis is very favorable and if you let the fear of recurrence consume your life than the cancer is winning & you will end up having a miserable life. It' s up to you to take control, not let the disease control you. The cancer happened, you can't change that. Your children need you, gain your strength from that and stay focused on them, not the what if's....Remember you can also get runned over by a truck...do you worry about that?
Hazel, I hope I got my point across and please let go of your fears and enjoy your family they need you.
Thanks so much Liz for your post, you have got your point across and I thank you for that. I do remember you now from previous posts - our cases were quite similar. You certainly sound like you have a good team looking after you. I think I will be fine once I have got Wednesday over with my first check up. I have been going through the breast cancer sites and everyone else seemed to be being checked up on thoroughly and often, whereas I was feeling like I had been abandoned - you are absolutely right in what you say, I am not to let it control me, and just recently its been on my mind non stop - I have been waking up - thinking of it, gone to bed - thinking of it, whilst the children are at school, I am thinking of it! Your post has done me good - its positive thinking from now on!!
Hi Liz, Just got back from my check up - it was the reassurance jab that I needed - I am ok again now - panic over. The doctor reconfirmed that I have an excellent prognosis - so thanks to him and thanks to you.
I am going to stay off the site for a while - Thank you to all the wonderful ladies who have helped me. I wish you all well.
Hi there-
I'm glad that your doing better ;+) Remember what I said in a previous post, we can always get hit by a truck but we don't worry about that...do we???? Atleast ...I don't and you shouldn't either.
Even ASCO(American Society of Clinical Society) released their latest studies last month(MAY 2008) on DCIS with microinvasion and once again the prognosis is good.
I noticed that I feel better when I stay off some of the sites. However, the site that does seem to help at times is www. breastcancer.org and if you go into the "DCIS" section. This section is very encouraging and very low key. You also have to remember that there are so many breast cancer survivors out there that are doing great and have gone on with their lives and do not post after treatment because they want to put BC behind them and I'll say it again....they are doing just fine so they have no need to post.
Intraductal carcinoma is the same as DCIS.
It is non-invasive ; that is it does not spread to the lymph nodes or to the adjacent skin or other areas.
You are right that DCIS associated with necrosis has a greater chance of recurrence than DCIS without necrosis.
The management usually involves lumpectomy with clear margins and regular follow ups to assess the progress.
It will not grow invasive in 5 weeks, but you still need to talk to your surgeon about an earlier date for surgery. Ask him/her about the delay, and also about the DCIS with necrosis that you have.
It is important that you remain calm, just for the reason that you need to think rationally right now, and that only happens when you are calm.
Do let us know about how you are doing.
Keep us posted.
Hope this helps.
Good luck.
Thank you for your last post back. I have managed to get my operation brought forward to two weeks now after a great deal of stress and debate. During my waiting time, I have started to feel strange sensation in the area of the DCIS - like nettles, and nipping, could this be the DCIS?? Also, what is a reasonable waiting time for DCIS from the suspicious findings on the mammogram, through to biopsy,through to the operation??? Thank you in anticipation.
Hazel
The waiting time is variable and depends on the stage and invasiveness of the cancer, the age of the patient, other risk factors and availability of the surgeon.
The symptoms you describe sgould be brought to the notice of your doctor.
You should also talk to your doctor in detail about the surgical procedure in detail and clear out any doubts that you may have.
Do keep us posted about the surgical plan and your doctor's advise.
Hope this helps.
Good luck.
I just wanted to update you on the surgical plan and my last post to you. I had a lumpectomy on the 5mm of DCIS - waited three weeks for the results and was called in to be told that it had 1mm of invasiveness in the margins, the doctor said he could do another margin removal - I told him to do a mastectomy instead- I knew it had turned invasive, as I mentioned in one of my posts, I could feel it nipping etc, anyway, I went in a few days ago and had a radical mastectomy and have to go in again for my results in one weeks time. I now have no lymph nodes and the numbest of sensations. I dont know as yet whether I will have chemo, radiation or hormone treatment. What is the normal treatment for someone who had a radical mastectomy for someone in my situation? - I am 47, had 4 children after the age of 37, mother died of bc, mine was High Grade with Necrosis - what are the chances this will come back in the chest wall or the other breast???????? my doctor said that I should have a good prognosis - I asked what his interpretation of a good prognosis was - and he replied cured - but there again he also said at my first meeting that my cancer was slow growing - and three/four months later I am sat here breastless on the right after having broken my childrens hearts and doubting every comment that is made medically to me!!!!!!!!!!!
The normal treatment is to follow-up surgery with some adjunctive treatment like chemo/radio/hormone depending on the biopsy reports and receptor status.
It is difficult to predict someone's chances but usualy DCIS is considered to have a good prognosis and mastectomy would help you to a great extent.
Your doctor would wait till the biopsy report from the mastectomy comes in to make any judgements on the form of adjunctive treatment and your chances.
I am sure that being a child of a Breast cancer patient you would know the importance of keeping high spirits as well to keep talking to your doctor regularly.
Keep us posted on your reports and your well being.
Regards.
I just got back from the hospital and questioned one of the nurses regarding an expression that the doctor had used to me after my mastectomy, he told me that he had seen MULTI FOCUL ...............................I didnt hear the whole sentence, but when I questioned the nurse about it, she said it could mean that there are specs of cancer in different areas of my breast. If this is the case, then they may have been found over a month ago when I had my intial lumpectomy, also because I was told after the biopsies that what they had found was HIGH GRADE NUCLEAR WITH NECROSIS - I checked up on the internet and found that all these ingredients of what it seems I have - have the worse prognosis of all. Is this true, or do I still have a lot of hope after this mastectomy and other treatment. I am so full of fear!!!!!!!!
Thanks again,
Hazel
Like i have mentioned in my previous posts - DCIS with high grade necrosis is does have a higher chance of recurrence - but the fact remains that it is still DCIS and that is supposed to have a fairly good prognosis after definitive treatment.
Multifocal does mean multiple lesions or multiple sites being involved - but for a better clarification it would be best for you to talk to your specialsit in detaila nd clear out all the doubts that you have.
Let us know how you are doing and also about what your specialist advises.
Hope this helps.
Regards.
please be patient and speak to your doctors. Be admimant about want to know information. We all fear the unknown so try to get as much info from your doctors. I too have DCIS with microinvasion and the same high grade cells as you have along with Her2Neu 3+. I too am trying to gather information. I too have 3 young children (10months, 6 yrs, and 10yrs). You are not alone. Do not rely too much on what's on the internet you will drive yourself crazy as I have. Some of the studies are not from reliable sources and may be outdated. Take one day at a time.
Wishing you the best,
Will post my results tomorrow. Whats your next step?
I wish you the best too.
Hazel
How are you doing now?
Keep us posted on your reports. Also, ask the lab for a copy of the reports and discuss them with your doctor once.
Regards.
Just to let you know I got my results today - the breast taken was cancer free, the multi focal presence was negative, the lymph nodes were negative and I have an excellent prognosis. They must have got everything with the lumpectomy I had 2 months ago, - though they did say there ws 1mm of microinvasion, so I am a bit unsure if that was taken then or with the mastectomy. Now I go on Tamoxifen for five years - bit unsure of this though as I hear that there are now better drugs than this one.
Best wishes
Hazel
Great News!!!!!
I don't know much about Tamoxifen except that it's used if your estrogen positive. It's commonly used to help decrease recurrence if your estrogen positive. I'm negative for estrogen and progesterone. The website that I have found most usefull is the John Hopkins website. It's better than surfing the web and getting wrong info,,,,it can cause alot of anxiety.There are question and answer forums on it. A breast cancer survivor who is a nurse and has extensive knowledge about breast cancer runs it for free. At various times you can e-mail a question about your particular case and get a response. Sometimes it's helpful to read previous posts because they may pertain to you too.
Best wishes,
Liz
I followed up with Tamoxifen... seemed to have done the trick so far. Have heard of newer anti-harmone drugs. Would also research on it.
Did not have any probs with Tamoxifen.
Your relief must and should be immence!
How is your husband doing?
Still concerned, MarySue
Nice to hear the news.
Tamoxifen is usually the most widely used and one of the most researched drugs.
Do not worry and just discuss with your oncologist about any doubts that you have and do follow up regularly with your doctor.
Talk to the oncologist about the possible side effects of tamoxifen and if you need to report back any specific abnormal findings.
Keep us posted.
Regards.
Yes, the relief is immence, I cannot believe i am the same woman as this morning.
Thanks for asking about my husband, he is not so good at the moment, he has FOCUL SEGMENTAL GLOMULARSCLEROSIS and has also developed Diabetes, on top of which he has caught a bug - its been very scary having both us parents down for the children. He is back at the hospital on Friday - he is over the moon though about me, I am very lucky to have such a good man.
Thanks and very best wishes,
Hazel
How are you doing now? Are you following up with your specialist regularly?
When are you scheduled for the repeat investigations and clinical examination?
Let us know if you have any doubts.
Good luck.
Best wishes,
Hazel
Hugs,
Liz
What grade was your DCIS/micro?? mine was grade 3 with necrosis, and how long ago did all this happen for you?
Thanks Liz, hope to hear from you soon.
Hazel (hugs back)
I think that we communicated b/4 back in March. I had DCIS with less than 1mm of microinvasion (stage T1mic), Lumpectomy with re-excision to obtain wide margins, negative sentinel node biopsy & 33 radiation tx's which I finished 3 weeks ago. My cells were high grade (3) with comeo necrosis. Being high grade, hormonally negative & Her2+++ is a very agressive form of cancer but also caught VERY early. I ended consulting with 10 oncologists because I was Her2+++, I wanted to be sure that I didn't need chemo and ALL agreed that the risks of chemo outweighed the benfits for me. I was told that the majority of DCIS is Her2+++. I've had CT scans of my head, abdomen, chest, & pelvis. She also did a bone scan. Both scans were performed with & without contrast. I've also had a CBC done & will do every 3 month but she does not do tumor markers. Normally scans are not routine for early stage breast cancer but my oncologist is very thorough & agressive. I am followed by her every 3 months and will be seen by my surgeon every 6 months where I will have a mammogram & breast MRI done. Since I had radiation, I will also be followed by my radiation oncologist every couple of months but not sure on the frequency yet. My gyn who is my primary also wants to see me every few months just to be sure I'm doing OK. I also decided to see a naturalpathic physician who came highly recommended by my breast surgeon to be evaluated on my diet and to determine if I need any supplements to decrease my chance of recurrence. I'm trying to be proactive and take control of what is in my control... Soooooo.. that's the run down on me.
It's understandable that your anxious, I too get very anxious and have 3 young children 11, 6, & 1 yr old. You were traumatized by your mother's experience.... is that what you want to do to your children? Ofcourse not.....Children are very intuitive & pick up on feelings. You need to focus that your cancer was caught VERY early and that you do have a good prognosis. Medicine has come a long way since your mother's days. Be vigilant and make sure that you feel comfortable with the doctors that you see. If you don't, find doctors that you feel are providing the care that you need; emotionally & physically. If you don't take care of yourself and your needs, nobody else will. Be proactive, I've heard of people having 5 cancers and are doing just fine because of early detection. In April, I too was diagnosed with skin cancer but caught very early & had surgery to remove it. It's healing very slowly but the doctor said my body is runned down but I will be fine.
Keep in mind, your prognosis is very favorable and if you let the fear of recurrence consume your life than the cancer is winning & you will end up having a miserable life. It' s up to you to take control, not let the disease control you. The cancer happened, you can't change that. Your children need you, gain your strength from that and stay focused on them, not the what if's....Remember you can also get runned over by a truck...do you worry about that?
Hazel, I hope I got my point across and please let go of your fears and enjoy your family they need you.
(((Hugs)))
Liz
Big hugs - Hazel (and thanks!!)
I am going to stay off the site for a while - Thank you to all the wonderful ladies who have helped me. I wish you all well.
Hazel
I'm glad that your doing better ;+) Remember what I said in a previous post, we can always get hit by a truck but we don't worry about that...do we???? Atleast ...I don't and you shouldn't either.
Even ASCO(American Society of Clinical Society) released their latest studies last month(MAY 2008) on DCIS with microinvasion and once again the prognosis is good.
I noticed that I feel better when I stay off some of the sites. However, the site that does seem to help at times is www. breastcancer.org and if you go into the "DCIS" section. This section is very encouraging and very low key. You also have to remember that there are so many breast cancer survivors out there that are doing great and have gone on with their lives and do not post after treatment because they want to put BC behind them and I'll say it again....they are doing just fine so they have no need to post.
(((Huggs)))
Liz