I need someone to calm me down now!!

jnbg88

Hi everyone. Hope, I am so sorry you are going through such stress. Everything I have read and was told by my surgeon is that it takes a long time for cancer to grow...so a few days should not have caused the cancer to grow that much. I was also told by my surgeon that the 5 and 10 year survival rates were the same for lumpectomy with radiation as with a mastectomy. While I really trust my surgeon (he is an incredible person who is the best in the area and has the bed side manner of a saint), I  am wishing I had done a mastectomy. I am having some issues with radiation, for one thing, and I didn't realize the extent of my cancer when I made the decision.

Wondering....can you go back and do a mastectomy and will health insurance cover it??

peggy_j

jnbg88,Prior to my lump, I asked my BS that question.She said our insurance has to cover a future Mx, by law, for any reason or no reason at all.I.e. If I change my mind.I live in CA so I'm not sure if this is a state law or maybe common in many states.FWIW I called our state's consumer health insurance helpline. ( found the number on our state's *.gov site). I asked other questions but the person was amazingly knowledgeable.

Hope999

Thank you so much, again!  Today I was on edge and nervous just about all day so I may have to start taking something to calm me down.  This morning I found out that my GP, who has been out of the scenerio since he told me it was cancer, wanted to talk to me.  Why???  The receptionist said that it may not be bad, the last time she said that the pathology report said 'malignant'.  The only thing I can think of is the 2nd pathology report was sent to him and he wants to talk about it.  But after the first diagnosis he passed me over to the surgeon who ordered the second scan/biopsy and I prefer to deal with the surgeon.

My GP seems to be very limited in knowledge and can offer me no solutions so I've decided to not talk to him.  I'll wait to talk to the surgeon on Friday, at least he gives me hope.

I ended up going to the emergency room yesterday and the doctor there said that it wasn't infected.  It wasn't red or hot and I did not have a fever.  She suggested anti-inflammatory medication so I've been using Advil.  But fear causes pain, I swear.  After she told me it was okay I felt fine.  But after the phone call today, the breast aches, plus all my glands seem swollen and tender, ever under my chin.  10 weeks is coming up and I fear that I'm at my breaking point.   Too many doctors terrorising me, lol. 

I'm glad that they don't rush the treatment and it doesn't grow that quickly.  Maybe I should write down what's happening and burn it - after everything is over.

Good news, I've decided to go with Lahey Clinic in Massachusetts.  They can fit me in on Monday and they've been so accomodating, to the point where they will get all the scans/reports from the local hospital.  Dana Farber was insisting that I bring the scans with me, and from my attempts, they were not easy to attain. 

The second hard mass is still there even though all that pus and blood dripped out.  Thank you to whoever posted above about their hardness.  From what I read it can take up to a year to go away.  I'm hoping they don't want to biopsy this now because I'm all biopsied out!  They can check it when they operate. 

Hate to sound so desperate but it's hard when you're faced with the constant unknown and everything so far has not been positive.  I'm hoping the rest will be a breeze after this, lol.

Has anyone posted pictures of their images?  I took some pics with my camera phone when they left the room.  The big one looks like 2 swans beak to beak.  Yes, I am losing it, but I'm giggling.

MaryNY

Hi Hope: Maybe once you get to the Lahey Clinic in MA and they have all your records, you can have them share with Dana Farber and get a second opinion there. I think you said you already have an appt date for Dana Farber. I really think you shouldn't cancel that yet. I really dislike the way they make it so difficult for the patient to get their own medical records. Actually would this be something that the GP could help you with. I do think you should inform him about your trip to Boston and tell him you are having difficulty getting your records.  Paper records of reports are easy, but imaging and pathology slides should go with you to the consultation too. It really would be better if the clinic had all of those instead of depending on written reports, which would just be someone else's interpretation of the imaging and biopsy slides.

I was probably the one that mentioned about the hard mass/haematoma at the biopsy site. And that was in the good breast. A year after my surgery (lumpectomy) I had a biopsy at the site of the biopsy/haematoma since they saw something suspicious which turned out to be scar tissue. If it you cheer you up I could send you a photo of my ugly purple breast, but I think it would "gross you out" (as they say here).

camillegal

Hope (the perfect name for all that's happening) now I don't know how your relationship with u GP is 9Mine is great) but he can be of more help to u than u can imagine--so if I were u i'd would keep in good contact with him and let him know all u'r plans  and thoughts--now this may sound funny but when all is said and done and all u'r cancer stuff is over he can be u'r best advocate for ur side effects and little thins that will come up, I know mine is.

Linda2222

I agree that you need to go to another doctor. This sounds crazy. I had a lump after my biopsy for quite sometime and was told it was normal because of blood build up etc.  I went through all of the ultrasounds,biopsy,metal clip etc. I have had my surgery and diagnosis and now have to have a routine body ct scan which terrifies me. The testing and waiting are the worst parts. I am starting chemo in a few weeks and radiation and also mine i hrt pos. which is not good news. I know how scary all of this is and I wonder some days if I will ever truly feel normal and happy again. Prayers to all of you.

Linda2222

I also was told that the outcome of lumpectomy vs total mastectomy in my case were the same. I was told that if you have a total mastectomy and the cancer returns then it is harder to treat because there is little to no tissue to remove so I chose lumpectomy. So much info during this process that you really don't know what the right decisions are.

edwards750

I was blessed with good doctors too so the actions of the Radiologist defy logic. I have to admit though the radiologist who read the results from my mammogram definitely needed a class in bedside manner. She said "you arent going to like what I am going to tell you"..great opening huh...and then proceeded to quote statistics and recurrences and types of breast cancer. I had just been told I could go home and nothing to worry about until she came in. Like I processed any of that when I was in the state of shock. The doctor we all have to have faith in and a good relationship with are our oncologists. My sister had issues with one of her doctors but she loves her oncologist. No worries all roads lead to the oncologist. I cant understand the lack of compassion and professionalism by some doctors. They should know there are zillions of doctors out there who are qualified so it comes down to communication and connection. They better get thee to charm school.

purple32

"Do you know how hopeless it feels lying exposed, not knowing what's going on and not knowing what to do to escape what you're going to hear."


Yep!  I imagine many of us have . You've come to the right place !
Where the hey do you live ?
I would go to an ER with that bleeding to be sure to prevent infection.

 I am sorry, but I do not believe for one second that you are feeling the BC growing.

 Breathe ! 

Think of what you must do to be active and take action ( it helps) Perhaps put in a call to another dr (?)  get a second opinion ? Go to the hospital ?
I am sorry this doesnt seem like much advice, but again- I just dont think you are 'feeling the BC grow".  I hope that is of some comfort to you.

Good luck and best wishes to you.

Take Care!

purple32

Great news!

I went to Lahey many yrs ago  <for another issue>, and they are good.

I live in MA.  Do you ?

MaryNY

Hope: I hope you are doing OK. I'm sure you have a lot to sort out to get ready for your flight to MA. Will the clinic help with accomodation or maybe you have friends/relations in the area?

Hope999

Just came back from the surgeon. Local advanced breast cancer. I don't even want to look it up.



There is the small tumour in front and the huge one right behind it. He's claiming the two, large, hard masses as part of the cancer even though they only appeared after the biopsies.



My next worry is spread especially after the 7 biopsy samples were taken along with the mammos and the aggressive ultrasounds. My nodes are still enlarged all over, not just on the affected side. The breast is still very tender.



So it will probably be chemo with the drug that starts with neo, then surgery then radiation and chemo again. Not sure what order yet.



There are others worse off than me I'm sure, and believe me I've cried at your stories. You give me so much hope which will help to keep me focused on getting through this.



Hopefully the worst news is behind me and Lahey does not announce more bad news, although it may be better to find out now rather than later.



I'll definitely keep you updated because you have calmed me down on several occasions, and I may need you again, lol. Thank you.

Hope999

Sorry, didn't answer. I'm from overseas and Lahey arranged the hotel and shuttle, which I have to pay for and claim back. My insurance company paid for the flight for me and my mom.

MaryNY

Hope, regarding the two tumors -- I had the experience of going from one confirmed tumor to five suspicious areas. After my initial diagnosis, I had PET and CAT scans and breast MRI. The breast MRI indicated four additional suspicious areas, three of which were ruled out by biopsy. But that still left a suspicious mass, like a satellite tumor, just behind the confirmed tumor. The breast surgeon I was seeing at the time said I should have a mastectomy as otherwise during a lumpectomy she would have to remove such a large area to ensure clean margins that there would be little left. At that stage everything seemed to be getting very complicated so I went for a second and third opinion. Both of those advised having a lumpectomy and were doubtful about the second mass. I had the lumpectomy with one of the other surgeons, who removed enough tissue to get both confirmed tumor and the suspicious area behind it. The pathology showed there was only one tumor. My point is that the imaging is just a tool and it can be interpreted differently by different people. You really need to get some expert eyes and minds on your case. You already have doubts about the doctors you've met so far. You need to feel a sense of trust in those who are treating you. Once you find that, you can let them create a plan. Once you know exactly what you are dealing with and have a plan in place, then you will have a sense of relief.

NancyD

Hope, you are having neoadjuvant chemo, which means "chemo before the surgery." You will find out the specific drugs when you speak with an oncologist.

I had 4 rounds of neodajuvant TAC (taxotere, adriamycin, cytoxan) before my surgery, and then two more rounds afterwards. The positive thing about neoadjuvant chemo is that the drs can see how effective the chemo drugs they chose are on your cancer.

apple

you wonder why they have to speak in Latin.. BC is hard enough already.

Hope999

Ah, neoadjuvant is just a term and not an actual drug, thank you for explaining.  Mary, I must keep that in mind.  They've asked for all my mammos from the past two years, plus the ultrasound pictures on disc.  Also the reports and copies of the lab slides showing the cells.  Hopefully they'll do some probing themselves.

This surgeon recommended a lumpectomy also but the masses plus the lumps will take up the whole top of the breast, going who knows how deep.  I'm a B/C cup.  He tried to talk me out of the masectomy but did say that it was my choice.

Nancy, what constitutes a round of chemo?  Hopefully I'll put my fears aside tomorrow and read up on things like that.

Thanks again.

MaryNY

Hello Hope:

Yes, it will be best to bring as much of your records as possible. They may repeat some imaging if things appear unclear, but always best to have the old records too so they can see changes over time.

If the consultant(s) at the Lahey Clinic advise neoadjuvant chemo (that's chemo before surgery) as NancyD said the advantage of that is they can see if it's working. If not, they can switch to a different drug or drug combination. Those of us who had adjuvant chemo (chemo after surgery) hope that it worked but we don't really know.

A round of chemo is a single treatment. The frequency and number of treatments varies from one person to another. The purpose of chemo is to kill off any cancer cells either in the breast or elsewhere in the body. It can be unpleasant but there are a lot of remedies for the side effects.

I think the surgeon who is advising you is the one in the UK? Go to your appointment in Massachussetts with an open mind. Ultimately it will be your decision, but hear them out and ask plenty of questions. You have already accepted the fact that you have cancer so I think you will be better able to handle the consultation than you would have been a few weeks ago. Not sure if you are planning to be treated here in the US or do you intend to take their recommendations with you and have the treatment in the UK?

Hope999

Thank you again Mary.  I see your point about knowing if it's working before tumour removal.

I will just come back here for chemo if they recommend that first.  If it's surgery, then I might get it done at Lahey because they may be more receptive to a masectomy with reconstruction, unlike my surgeon here.  In any case I want the chemo asap!  lol.  If time is on my side I may see the oncologist after the surgeon to see what he/she suggests and then I can compare it to what they want to give me here.

Seems like I've been waiting at the train station forever wanting to take the journey.

Hope999

Hate to keep bringing this back to the forefront but I don't want to start new topics.

Had my appointment today with Lahey and the first thing the nurse pulled out was a pamphlet from breastcancer.org.  It was comforting to see something that I recognized.

As usual, worse news.  The tumour is 7cm because they are going by the hard mass on the top of the breast, but I guess not the second one that appeared after the 2nd biopsy.

So 4 months of chemo, mastectomy, then radiation.  No breast conservation because that will slow the treatments down.  Chemo needs to start asap so I'm flyng back this week to start (if I can find my doctor).

They used the scans that I brought and did not do any new tests.  They want me to do the PET to see if it's travelled to other organs and if it has, then I'll be in stage IV.

I feel happier that they told me what needs to be done and the oncologist even wrote out the plan that she would do.  She's worked with the doctors back home and has confidence in them.

So my journey to recovery will start next week, hopefully.

Hope999

Double post.

MaryNY

Hope: it makes sense to keep your posts under the original topic. That way you will easily be able to find all your posts.

I'm sure today must have been exhausting for you. But at least now you have a plan. Good to hear that the oncologist has worked with your doctors back home. Hopefully they will consult with the oncologist at Lahey if they have any questions as you go through treatment.I think you will now have more confidence in your treatment plan. 

Do they want you to to the PET scan at Lahey or will that be when you go home? Hoping you and your mom are having a good night's rest. 

FilterLady

Hi Hope:

I'm sorry you didn't get better news.  I know that you are relieved that at least you have a plan of "attack".

It makes all the difference to be able to get a plan in place and that way you can feel that sense of accomplishment after you conquer each step of your journey.

I'm adding you to my prayer list....take care of yourself!

camillegal

Hope I'm sorry u have to go thru all this, but it sounds like u have things under control--which is a good thing---Sending u all the best.

Alicethecat

Hello Hope

Sorry to hear you've had to join us but this is a lovely website with very supportive ladies and gentlemen.

Re: So 4 months of chemo, mastectomy, then radiation.  No breast conservation because that will slow the treatments down.

I'm just ahead of you - had a mastectomy in February, chemo started in March and will finish in August, followed by rads. No breast conservation or rebuild for me until after a year of Herceptin as I am HER2+. What about you?

This is the most difficult time of all. Once you've started on your treatment plan, it's easier to keep calm and carry on!

Best wishes

Alice

ladycbigdiva

I would get another doctor. No matter what you have to deal with you need to be surrounded by positive. Diagnosed 4 days before Christmas in 2001 with 4th stage several large lumps and already in the lymph nodes. I planned how to prepare my special needs son's (2) for life without me. Mastectomy, chemotherapy and radiation. The boys are now 14 and 18 but an angel in the way of a surgical oncologist and an a great hematology oncologist said that we were a team and we work with God. Everything I needed mentally, physically saw me to this point. This year my mammogram showed a small mass in the left breast, but I am good because I know what to do. You have to have positive people around you, dump the doctor and get on with your healing and happiness.