Just wanted to introduce myself- DCIS dx
Since I took so long to get diagnosed, I’ve been researching all over and reading this board since July and already feel like I have learned so much. This seems to be such a great group of women to have as a place of shared knowledge and more importantly – warm comfort! I’m sure I’ll be posting with many questions!
Can you handle one already? Who mostly calls the shots about the treatments? The surgeon told me I need a Medical Oncologist, and a Radiology Oncologist. So which one tells me what the treatment options are? Does the surgeon decide if I just need a lumpectomy & radiation? (that’s what she told me to expect based on the preliminary results). Or does the Medical Oncologist make the treatment recommendations? I’ve grown attached to my breast radiologist, because she’s the only one I knew and I’ve been seeing her frequently over the past 5 years. If you asked me long ago what a radiologist does, I would have said simply “reads x-rays”. Now I know much better- she reads ALL KINDS of tests and makes a lot of decisions on what and how to biopsy, performs all kinds of biopsies, and even fights with my insurance company when they rejected the MRI (which is what found my mass!) So my first instinct is to return to her but now unfortunately I’ve “graduated” to a whole new set of doctors. So who’s in charge now? Who tells me what I really want to know- should I consider a mastectomy? Do I need chemo also? Will I ever stop obsessing over this?
I know this is very long, I promise future posts will be shorter! lol Thanks for reading.
Susan
Comments
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Welcome To the Club
Hi Susan!
Sorry that you are now in the "club" but we are a great bunch of people with varied experiences dealing with bc. I'm sure others more qualified than I will chime in with answers to your questions. I was sent from a bad mamo to a surgeon who did a biopsy and then when that was dx with cancer, I had a masectomy followed by an appointment with an oncologist. So, I'm still in your ballpark but different section.
This whole journey that we are unwilling on is so personal and all we can do is try and get as much info as possible and make the decisions we can be comfortable with.
Best of luck ot you and hugs. Sally0 -
I am sorry you had
to find this site but I am glad you did. You will get lots of answers and support here. As far as doctors go I had one that did my ultrasound and one that did my biopsy. They were both at the radiology group. Once I was diagnosed they contacted my regular doctor as to who I should see. They then set up all of my first appointments and called me with dates and times. I actually saw my surgeon, radiation oncologist and medical oncologist before I started treatment.
The surgeon will probably be the one to recommend what type of surgery would be best for you but the choice is yours to make. Ask lots of questions and if possible have someone with you for your appointments so they can ask questions and listen to the answers too.
Hugs0 -
Welcome aboard. Sorry youladyg said:I am sorry you had
to find this site but I am glad you did. You will get lots of answers and support here. As far as doctors go I had one that did my ultrasound and one that did my biopsy. They were both at the radiology group. Once I was diagnosed they contacted my regular doctor as to who I should see. They then set up all of my first appointments and called me with dates and times. I actually saw my surgeon, radiation oncologist and medical oncologist before I started treatment.
The surgeon will probably be the one to recommend what type of surgery would be best for you but the choice is yours to make. Ask lots of questions and if possible have someone with you for your appointments so they can ask questions and listen to the answers too.
Hugs
Welcome aboard. Sorry you need to be here at all but you will be glad you found it. You will recieve so much support and help. My experience was I had routine mammo with my primary, then biopsy at Breast Center. After my dx I saw the Medical Onc. 1st then the surgeon. The 2 of them together decided on what type of surgery, lumpectomy in my case. My Medical Onc. over saw all the chemo. I have a rad. Onc. that has handled all the radiation (last trt. tomorrow)!!!! I will continue seeing my Med. Onc. for a while now. I just started Tamoxifen a little over 2 weeks ago so for 5 yrs. at least. He is who I will see for future mammo's and such. Praying for you, God Bless
(((Hugs))) Janice0 -
Thanks Sally. You're rightMiss Murphy said:Welcome To the Club
Hi Susan!
Sorry that you are now in the "club" but we are a great bunch of people with varied experiences dealing with bc. I'm sure others more qualified than I will chime in with answers to your questions. I was sent from a bad mamo to a surgeon who did a biopsy and then when that was dx with cancer, I had a masectomy followed by an appointment with an oncologist. So, I'm still in your ballpark but different section.
This whole journey that we are unwilling on is so personal and all we can do is try and get as much info as possible and make the decisions we can be comfortable with.
Best of luck ot you and hugs. Sally
Thanks Sally. You're right that even though so many are going through this journey I guess the process is at the same time customized to each of us. I'll just have to be patient, but it's not easy! I'm greatful for this board already. It seems that everyone has to somewhat make their own choices but I'm glad from reading past posts that I see many say "I did -----(whatever treatment) and I feel good about it". That's what I hope for at the end of this- to think I made the right decision. Oh, and world peace would be nice too.0 -
Thanksladyg said:I am sorry you had
to find this site but I am glad you did. You will get lots of answers and support here. As far as doctors go I had one that did my ultrasound and one that did my biopsy. They were both at the radiology group. Once I was diagnosed they contacted my regular doctor as to who I should see. They then set up all of my first appointments and called me with dates and times. I actually saw my surgeon, radiation oncologist and medical oncologist before I started treatment.
The surgeon will probably be the one to recommend what type of surgery would be best for you but the choice is yours to make. Ask lots of questions and if possible have someone with you for your appointments so they can ask questions and listen to the answers too.
Hugs
Congrats on your final radiation treatment! I guess I'll make appointments after the surgery with all and go from there. This is confusing, but I appreciate hearing how others went about it.
Take care, and hugs back!0 -
To Lady G- somehow I'm having trouble postingladyg said:I am sorry you had
to find this site but I am glad you did. You will get lots of answers and support here. As far as doctors go I had one that did my ultrasound and one that did my biopsy. They were both at the radiology group. Once I was diagnosed they contacted my regular doctor as to who I should see. They then set up all of my first appointments and called me with dates and times. I actually saw my surgeon, radiation oncologist and medical oncologist before I started treatment.
The surgeon will probably be the one to recommend what type of surgery would be best for you but the choice is yours to make. Ask lots of questions and if possible have someone with you for your appointments so they can ask questions and listen to the answers too.
Hugs
Thanks for the info- and you're right about taking someone with me to important appointments. I've already had to re-read the notes I took over the phone when I got the diagnosis four days ago. I think I blanked some of them out but it was my handwriting, so I know I wrote them!
Best regards0 -
This IS a GREAT Place...
to find comfort and share information. It's not exactly the "club" everyone wants to join, but sometimes you just don't have a choice:(
I'm no expert, but I think the biggest decision makers in your treatment is the onocolgist. They are the ones that know what statistically and medically would be the best route to take based on the pathology report. Of course, each "phase" of the treatment would and should be looked at by all doctors involved. And they should all talk/work with each other. Each doctor should meet with you individually to go over treatment options, chemo/no chemo, radiation/no radiation, and so on. Ultimately, you have to decide what treatments you are willing to go through. But I think the onocologist is the most versed on what treatments will give you the best outcome.
Gosh...I hope I'm making some sense. Seems there is so much to say, but I'm not very good at writing it! LOL.
On the bright side, it's GREAT they caught it so early!! There are so many options and treatments available these days!
You mentioned that you may have surgery on 9/14?...well I think that's a GREAT day to have it! I'll be celebrating 9 years survival on that very day!
I know it's overwhelming and scary at the moment, but you will get through it!
OK, I'm done rambling. And again, welcome!!
Blessings,
Sally
(the other one!:)0 -
Wecome Susan,
Glad you found us but sorry about the reason. Your question about who is in charge keeps playing in my mind. I have to say you are. Your Dr's should work together for your benefit I am having a mastectomy right side right after chemo and then rads. That is what My Dr's recommended. I originally wanted both breast off so I wouldn't have to do this again. But she told me with no history in my family at all and other factors I don't need to do that. You will need a Oncologist. Maybe your Rad Onc can recommend one. So sorry you had such a long summer of testing. I know how draining that is. Well bring on the questions we are here for you all the way through your journey. You are in my prayers Take care Kay0 -
As far as who calls the
As far as who calls the shots, in my case, I saw the surgeon first and he had the tests run and determined I needed chemo first to shrink the tumors. He sent me to the oncologist and picked the radiologist too. I believe the oncologist picked the chemo treatment but I don't know what they said between them. I will say that the surgeon I ended up using was the second one. I found the first one my PCP sent me to didn't have enough breast experience.
Good luck with treatment.0 -
SusanSusanEliz said:Thanks
Congrats on your final radiation treatment! I guess I'll make appointments after the surgery with all and go from there. This is confusing, but I appreciate hearing how others went about it.
Take care, and hugs back!
Thank you! It is all very confusing right now I remember well. It will not be long though till you are talking about all this and have a real knowledge of what it going on. That is good and bad I guess, it is knowledge we wish we did not need but, good to know when you do need it.My Med Onc. handled all of my appt. once I saw him. I was sorta guided along by the people there. It does all differ according to your treatment facility but I am sure they will take care of you. As someone else told you take someone to the first few appt. esp. You will be getting lots of info. I started all this the end on Jan.-10. I have to say looking back now I am amazed at how fast it has all gone. Keep us posted please. God Bless
(((Hugs))) Janice0 -
Susan
Welcome! I had a fantastic surgeon who told me which drs I needed to see. I chose them myself after inquiring about their reputations from those who might know. My dx was idc - only the sentinal node.
The med onc is the go to guy. Mine suggested the Oncodx test, results were low so I chose no chemo (and keep positive thoughts about that decision). The rad onc was very laid back, but the techs were wonderful. Arimidex and follow-ups by surgeon and med onc are, supposedly, it.
It took me a long time to 'stop obsessing over this'. I had to have as much info as possible, positive reinforcement and relied much on the wisdom found on this board. The farther I get from active treatment, the less I obsess. Even have moments of forgetting all about it.
So, recap - surgeon to med onc to rad onc, with med onc calling shots after all clear from surgeon (in my experience.)
Sue0 -
Susan welcome to the bc network
Some club, eh! I'm glad you've been reading and getting information. There are so many on this site who have helped me along the way. My dx was in May and my oncology surgeon gave me the name of the medical oncologist after my bilateral mastectomy. He's the one who really knows what treatment might be best determined by your specific dx and pathology report. I just had my 2nd chemo treatment last week. When I'm done with chemo my oncologist will recommend a radiology oncologist to see if rads are necessary. I'm hoping not! Best of luck as you journey through the bc process. Ask lots of questions and if you don't get the answers you're looking for ask someone else!
{{hugs}} Char0 -
Another datapoint
Welcome to the club that no one wants to join! I was dxed with DCIS in January 2009. I had a lumpectomy and 33 rads treatments. My center referred me to a general surgeon and I said Nuh huh and found a breast surgeon. She recommended the lumpectomy with the understanding that things could change. She also referred me to a radiologist oncologist and a medical oncologist. Usually the chemo decisions have to wait until you have surgery so they have the tumor to look at. Hopefully all this doctors talk to each other but it is *very* confusing.
And every center/area of the country does things a little different.
Hang in there and remember that *you* are the customer. Ask questions and keep going until you are OK with the answers (or as OK as it's gonna get with a cancer diagnosis!) And this board is a wealth of information.
Maureen0 -
DCIS
Susan,
Take your time in making any decisions. DCIS is contained in the duct and doesn't have the biological capacity to spread. That means you don't need to rush into anything. It also means that they do not use chemo for DCIS at all. In fact if your DCIS is low grade and your score on the Van Nuys Prognosic Index is low enough, radiation might not be necessary either.
It would probably be a very good idea to get a 2nd pathology opinion before you proceed with any other treatments.
When I was told that my margins were not good after my lumpectomy in 2007, I consulted with a world renowned DCIS expert and pathologist, with a consulting service anyone can use, he disagreed with my local pathologists. He said I did not need more surgery and that having radiation and tamoxifen would only decrease my recurrence risk by 2-4 percent. For me the side effects and risks were not worth the benefits.
There are a wide variety of treatment options that are successful for DCIS. The survival rate is almost 100 percent. A lot of what you choose will depend on what you are comfortable with. Some want very aggressive treatment, while others like me want the least invasive treatment that can safely be done. It is a very personal choice.
If you would like more info about the pathologist I used or if you have any questions at all please feel free to send me a private message or check out my story at this website:
https://sites.google.com/site/dciswithoutrads/home
All the best.
Hugs,
Sandie0 -
Welcome to Club DCIS
Hello fellow DCIS'r!
Hang in there. If you need any insight I created a website with photos and stories exploring both mastectomy and lumpectomy at www.mymastectomyonline.com if that may help.
I'm so sorry we had to meet this way!
Everyone on this board is so supportive and it has kept me sane!
xxoo,
SamuraiMom0 -
Your final pathology report
Your final pathology report will give your doctors more information about how to treat you. Your surgeon's findings will also help guide the treatment. An oncologist is often a sort of team leader in that besides helping to determine your treatment, they will really monitor you for side effects and future problems. A radiation oncologist may not be the radiologist who has followed you as a radiation oncologist has special training in treating cancer (as opposed to only diagnosing cancer).
I know you have a million questions right now and you are totally in shock. The best advice that I can give is to ask around and find some docs who you really, really trust. Then, do not try and learn in a few days what the specialists have learned over a lifetime. Let them get you better and concentrate on getting well.
Also, write questions down and bring them with you as you will be unable to remember them when you finally get to the doc's office (especially if you are me lol). Please know that there are many, many different treatment options and there are rarely 2 of us on this board who have had the exact same treatment and history. There are many types and presentations of breast cancer, so most docs will formulate the treatment that YOU need.
Hang in there! You have come to the right place. The Pink Sisterhood is powerful and you will feel the support! My thoughts and prayers are with you now!0 -
Personal DecisionCypressCynthia said:Your final pathology report
Your final pathology report will give your doctors more information about how to treat you. Your surgeon's findings will also help guide the treatment. An oncologist is often a sort of team leader in that besides helping to determine your treatment, they will really monitor you for side effects and future problems. A radiation oncologist may not be the radiologist who has followed you as a radiation oncologist has special training in treating cancer (as opposed to only diagnosing cancer).
I know you have a million questions right now and you are totally in shock. The best advice that I can give is to ask around and find some docs who you really, really trust. Then, do not try and learn in a few days what the specialists have learned over a lifetime. Let them get you better and concentrate on getting well.
Also, write questions down and bring them with you as you will be unable to remember them when you finally get to the doc's office (especially if you are me lol). Please know that there are many, many different treatment options and there are rarely 2 of us on this board who have had the exact same treatment and history. There are many types and presentations of breast cancer, so most docs will formulate the treatment that YOU need.
Hang in there! You have come to the right place. The Pink Sisterhood is powerful and you will feel the support! My thoughts and prayers are with you now!
After hearing all of your options it really is a personal decision. I was diagnosed with DCIS in the right breast but decided on double mastectomy because I had already had biopsies on both breasts especially the right side. Plus I have a history of cancer in my family - mother - ovarian cancer and father - stomach. Some may say I went with the more aggressive treatment but it was a decision my husband and I made together after listening to all of my options. This is a great site to get information from and I have obtained loads of advice on dealing with situations. Will be praying for you as you try to decide what to do.0
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