Who Do I Believe?

Pat634

My surgeon did a biopsy, ordered a pet scan and then sent me to an Oncologist who I was told would explain everything. The Oncologist told me I have Invasive Ductal Carcinoma that its 2.7cm and that I was staged at 2a.  He also told me that he had someone just like me who he cured with a combo of taxotere and red devil (4 rounds) and then a lumpectomy. He told me I would be "busy" for 3 to 4 months and that my problem was fixable.

When I saw my surgeon yesterday so he could check the site of my chemo port installation he seemed to feel it was IBC and would require a radical mast plus rads...

Now there is quite a difference between the two in every respect but I was trying to read upside down when I was in with the Oncol and believe the biopsy report did say Invasive Ductal Carcinoma.

These two had better be on the same page by surgery time because I am not about to let someone cut me up and later find out I wouldnt have needed that invasive an approach. As it is I have already been hospitalized a week in the past for a condition that I didnt really have and which could have been treated at home.

ICanDoThis

Well, they are both correct about the treatment for what they are describing.

But, that's a big difference - I would call the oncologist's office, and tell them what the surgeon said. And ask them what to do.

You are entitled to a copy of your pathology report, and you can do research in other areas of this site, or post here, where there are a lot of people with experience in interpreting the results.

Relax - you can do this.

tbird57

Hi Patrice,

You will find differing opinions among surgeons and health care providers.  I saw three surgeons and the vote was 2 for lumpectomy, 1 for mastectomy, and I chose the former, but each one of us has to make that decision for herself depending on your own knowledge, feelings and opinions and just plain "who do you trust." 

Emily2008

Get a copy of your pathology report ASAP.

Pat634

I'm going for labs and a meeting with a nurse practitioner at the Oncology Clinic this thursday so I will demand a copy of that and the pet scan results then.   I prefer the lumpectomy as I was supposed to finish my social work degree starting this semester and since he told me I would only be "busy" for 3 or 4 months I told them I would start in late January instead. 

I've never been through this before so I am not sure of the normal time frame but I know my 4th (and supposedly last) round of chemo is going to be around Dec 5th. So what happens after the last round of chemo for someone who got chemo first? Another PET scan I would presume? How long do they wait after chemo to do surgery?

I thought the whole purpose of getting the chemo first was to prevent me from having to have radical surgery.  I will post here in this forum the results so hopefully someone can tell me who, if anyone to believe. 

susan13

Hey Patrice,

I feel like I'm almost in your same boat.  I too am having chemo first, then surgery.  My surgeon first said "you are definitely looking at a mastectomy", then my oncologist said "we'll do chemo first so you can get a better outcome and have a lumpectomy".  So yeah.. who do we believe?  Another kicker is that when I went for a 2nd opinion this other oncologist also told me she suspects my cancer to be IBC.  Talk about different opinions.  I immediately ran to my current oncologist and he looked at me again and said "no it's not IBC". 
Good luck and keep us posted as to your results!

Sue

Panchoandlefty

I tend to be blunt and I know this is new and confusing but..

I am being kind when I say any Oncologist who uses the word "cure" at the same time as diagnosing you with a Stage IIa IDC, is pretty suspect in my book. Get a second opinion to clarify the pathology. I am sure your surgeon could set something up quickly. 

 am also 2a... my tumor was only 1.9 cm, but I had 1 positive node which didn't show up on my MRI. They found it during the SNB, which I assume you would have during the lumpectomy. 

I know that after my bilateral mastectomy (my choice), 4 months of chemo (dose dense ACT), 33 cycles of rads, and hormonal therapy, I have a 12-15% chance that the chance could return. Those are good odds, but not something one would call a "cure." Lots of variables go into treatment plans- age, health, etc so this isn't to say your plan should be the same as mine, but 2a is 2a...

If it is "just" an IDC, you may be able to get away with a lumpectomy, particularly if they do chemo first. That is a personal choice. Rads can be an area of controversy. Just depends on how aggressive they want to be with your plan.

You do need some clarification, period.

Stephanie 

  

Pat634

I suppose I better double check another topic of disagreement....My sister (who I live with) and I typically both get flu shots every year. There seems to be some disagreement over her getting one as she could infect me and a LOT of disagreement over if I should. Onco wasnt sure, surgeon didnt know, Onco nurse said I should cause its a killed virus.....yikes.  So did anyone get flu shots while taking chemo or have people they lived with get one?

leaf

There are two general types of flu vaccination.

a) A killed virus type - i.e. the shots.  These are DEAD virus parts and CANNOT infect you.  If you get the flu after getting vaccinated, then you got the flu from someone around you, and not the shots.  http://www.cdc.gov/flu/protect/keyfacts.htm

http://www.cdc.gov/flu/about/qa/fluvaccine.htm

They do recommend this KILLED vaccine for immunocomprimised people, if they don't have an egg allergy or have had Guillain-Barre syndrome  within 6 months of a previous flu vaccination.   They may not have normal immunity, but even some protection is better than none.  To give you an example, they recommend the flu vaccine even for people with advanced AIDS.  Of course, these people are severely immunocomprimised. http://www.cdc.gov/flu/protect/hiv-flu.htm

In this double blind placebo controlled trial, the flu vaccine had no more side effects than placebo in normal, healthy adults. http://www.ncbi.nlm.nih.gov/pubmed/8687262

b) A live virus nasal inhalation.  This contains a virus that causes less flu symptoms than normal. Anybody who is immunocomprimised, or lives with someone who is immunocomprimised, or has contact with anyone who is immunocomprimised should NOT get this vaccine.  If you are over 50 years of age, you should also NOT get this vaccine, even if you have no contact with anyone who has an impaired immune system and are perfectly healthy.

(However, this 2007 article say they couldn't find any MAJOR risk for transmission to immunocomprimised patients.) So this may be more of a theoretical concern. http://www.ncbi.nlm.nih.gov/pubmed/17520544

http://www.cdc.gov/FLU/about/qa/nasalspray.htm

*****

Almost as many people die of flu complications as die of breast cancer each year in the US!

"An annual average of approximately 36,000 deaths during 1990--1999 and 226,000 hospitalizations during 1979--2001 have been associated with influenza epidemics."  http://www.cdc.gov/flu/professionals/acip/background.htm

So even if the flu vaccine is not 100% effective, if you don't have contraindications for the vaccine (egg allergy or history of Gullian-Barre syndrome within 6 weeks of a previous flu vaccine) - strongly consider getting the flu vaccine !!! For most of us, that would mean the shots.

Flu vaccination saves lives!!

wishiwere

I inquired when I was dx last fall this time of year about getting one and was told no.  Not sure why now, in hindsight, but I think it was be/c of the chemo I was going to be doing, so that might be why. I know my mother got hers the day before she came to help me out after surgery and ended up sicker than a dog.  at 80 with a UTI, she nearly ended up in the hospital. Not from the shot, but....maybe it lowers your resistence for a time, not sure why they said not to at the time. I had surgery oct 25 and then started chemo dec 5th.

As for the, is it IDC of IBC. YES! Get a copy of the report and a second opinion.  2 far different dx.  Good Luck!

Pat634

Okay my social worker got a copy of my report (thank goodness someone did) and it is IDC and NOT IBC so the surgeon happily is wrong!!!!!!  Just a note....I was told that the oncologist is the real cancer specialist and should typically know more about what cancer is and what treatment will be most effective than a surgeon would.

Panchoandlefty

A surgeon is a surgeon and an oncologist is a medical doctor... Whether your surgeon is up o breast cancer probably depends on if he/she is a breast surgeon, or a general surgeon that does some breast work. 

In general, you will direct most treatment-related questions to the oncologist, since chemo/rads, etc are more in their area. So stuff like the flu shot goes to the onc...

Surgeons are more familiar with the surgical options (lumpectomy vs. mastectomy), clean margins, wound care, port installation, etc. 

Personally, I'd get a flu shot if doing treatment in the winter.

Stephanie 

ps123

Hi Patrice,

 I also did chemo first. I did 4 rounds of chemo (A/C) then had an MRI to check how well my tumor responded.  I then had 4 another 4 rounds of chemo (taxotere).  After I finished the taxotere I had another MRI to see how the tumor had responded.  This time the tumor itself had shrunk alot but I also had a lot of dcis so ended up with a mastectomy anyway.  My docs waited about 6 weeks between my last chemo and surgery.  Because I originally had a large tumor I had radiation after surgery also.  I did have a flu shot while still doing chemo. 

Pat