So lost in all of this what to do?

shellbell1963

I was diagnosed last week with IDC, I am ER positive, PR positive and HE2 Positive. I have so many fears and doubts. I don't what to do. I have two areas one is .7 cm cancerous tumor and the other is a pappiloma, which they told me was noncancerous. I am at lost because this type of cancer is aggressive so I am wondering daily how much bigger to this get and where has else has it gone. My mind is a mess. My emotions are all over the place. I have a 18 year old daughter who I want to see finish her college education and marry. I have husband who is very UNSUPPORTIVE, he is more worried about how much this is going to cost financially. He wants me to opt for the cheapest way out. I was given the choice of a lymptectomy or a mastectomy with possible additional hormonal treatments, radiation and chemo if necessary. I don't know what procedure to have I don't know what to do? I had a total hysterectomy 3 years ago for endometrial cancer which didn't need any treatment after. I was told it is very rare to have endo cancer and breast cancer.

Since my diagnosis I have been having the worst thoughts that I am going to die and this is a hopeless situation. I wonder what I have done to cause this and why I am being punished. How do I handle this because I am not doing well with it. I am at a loss. Well just wanted to get this all off my chest and find perhaps someone would offer some help. Thank you.

Moderators

Shellbell,

We are so sorry to hear of your diagnosis, but very happy you've found our supportive and knowledgeable community. You're sure to get the advice and encouragement you need here!

We're sure there will be some other members along shortly to offer their experience and suggestions; in the meantime, you may be interested in checking out the main Breastcancer.org site's pages on IDC - Invasive Ductal Carcinoma, as well as the section on Your Diagnosis, which will help walk you through what each part of your pathology report means.

We hope this helps!

--The Mods

Anonymous

shellbell1963, I'm so sorry you're having to face this diagnosis. You've come to the right place for support. I think it's normal to feel all the emotions you are feeling. I felt the same way when I got my diagnosis. Once I had a treatment plan in place, I felt much better. I am also HER2+++.  You may want to try and find a local support group in your area. I went to one when I was diagnosed and it was so helpful. It helped to talk to women going through the same thing. You will get through this. Just take it one step at a time. In the meantime, if you need someone to talk to, feel free to PM me.

NatsFan

Shell - Six years ago I felt the same way you did - I had Grade 3 IDC, multifocal tumors, and lymph node involvement. I was sure my life was over. Today I'm still going strong and have no intention of going anywhere any time soon! So believe me, all is not lost.  IDC is the most common kind of breast cancer.  That means it's been well-studied and they know exactly what the most effective treatments are for it.  All those "positives" - ER, PR, etc. are positive news (pun intended) - that means that there are targeted hormone therapies that are very effective against your tumor type.  

As Slow says, once you get a treatment plan in place, you will feel much better.  I am sorry that your husband is not being supportive.  It may be that he's just as frightened as you are, but since many guys aren't comfortable with emotions, he's focusing on finances because that's something he can understand.  I hope so, anyway.  

A few suggestions - get a notebook and dedicate it to BC.  As you think of questions, write them down in the notebook.  Take someone with you to your appointments, especially these early ones.  If your husband is not supportive, find a friend or relative who is, or call your local cancer society and ask if they have a support program - many programs will "pair" you with a woman who has a diagnosis similar to yours.  When you go to appointments, give the person accompanying you the notebook.  Their job is to take notes so you'll be free to talk to the doctor.  At the end of the visit, when the doctor says, "Do you have any questions?" your notetaker's job is to review all your questions that you wrote down and make sure there's an answer for each.  That notebook will be a valuable reference source for you after the visit, as there's no way you'll be able to remember everything that's said to you.

Don't hesitate to get second opinions.  If you are in the US, you may want to consider getting a consult at a NCI-designated Cancer Center. These centers have special Breast Centers where the surgeons and doctors do nothing but breast cancer all day every day.  You'll see several specialists on the same day, and they'll review your case from top to bottom.  They'll explain your options and make recommendations.  You don't have to get treated there if you don't want to, but having your case reviewed by the best cancer people in the world will help you to make informed decisions.  

Finally, stay off the internet except for here on Breast Cancer.org.  In here you'll get accurate info and can "talk" with women who are going through exactly what you're going through - you'll never be alone here on BCO. 

momand2kids

Big hugs...Others here are gift--- you have a very common type of breast cancer.... they know so much about this.... 

If you search for Beesie on this site, you will find a very good analysis of lumpectomy vs. mastectomy.  Only you can make this decision-- and it is not an easy one, but you will make the right one for you--- 

I had a lumpectomy, a short round of chemo and radiation.  It appears that you may end up with perception/chemo based on the her2.... please keep us posted-- come back her often-we can help--- there are others who have been in your situation (and even with an unsupportive spouse).  and I know they will help....

BikerLee

you are in the hardest phase right now - the waiting game - what will be the treatment plan game…  it's soooo stressful!

you're diagnosis looks a lot like my MIL's diagnosis - a small triple positive tumor.

she had a mastectomy right away (no recon was her choice).

chemo was recommended because of the her2 status.  her recurrence risk was low, but the docs said that the her2 meant that if there were a recurrence, it'd be super aggressive and very likely metastatic.  she decided to go with their recommendation and do the chemo.  as i understand it, standard of care is chemo for her2 positive tumors that are larger than somewhere in the neighborhood of 0.5 to 1.0 cm.  i believe her tumor came in right at 1.0 cm according to the pathology report. anyway, she had four cycles of tch, and she will continue with the h (herceptin) for a year.  

of course, i know nothing about your financial / insurance situation, but it might be worth meeting with a social worker in order to talk about that situation.  

i'm sorry your husband is not being a supportive partner. it's a difficult diagnosis to face, and our caregivers can be just as scared as we are. in fact, i would argue that it is far easier to be the patient than be the caregiver.  

if you can, take a trusted friend or family member to your appointments. that person can help you take notes and remember to ask all your questions.  writing down your questions helps a ton.  if i didn't do that, i would forget more than half of them.

what i did was maintain a google doc with all of my health information. that way, i was able to access the file when needed.  i'm really glad i did it that way. it's a very flexible format, and i've gone back to the file periodically since finishing up treatment.  anyway, i'd enter my questions as i thought of them (sometimes at work… sometimes at home… often in the middle of the night)… 

i'm so sorry you are dealing with this! i've gotta run…

hugs.

lee

Trisha-Anne

Shellbell, you poor thing, it is very overwhelming when you get a diagnosis of breast cancer.  But don't despair - you aren't going to die anytime soon.

I also had triple positive breast cancer, in fact I was lucky I had two tumours, one was IDC triple positive and the other was ILC (lobular instead of ductal) and was only ER/PR positive.

Being triple positive means that the cancer is usually pretty aggressive, but it's "good" too because there are a couple of targeted therapies for HER2+ that are wonder drugs.  I did chemo for six cycles and also did Herceptin for 12 months.  Herceptin isn't chemo - it's a targeted drug and the side effects are pretty minimal.

You will get through this - your tumour is small. Yes you have a hard road ahead of you, but you have everyone on this board who are all amazing women who have done the journey ahead of you and can cheer you on.

There's a great thread on here under the HER2 positive page - you can find it here:http://community.breastcancer.org/topic_post?forum_id=80&id=764183&page=1

Have a look at it, and you'll get great advice from the ladies on there.

I'm just over three years out and doing fine - it's not a death sentence.

Trish