I need someone to calm me down now!!
Because I can't go another weekend with bad news on my mind. For the past 8 weeks it's been worse news every week. It's taking a toll on me now.
It started with a 1.1cm lesion in the left breast and it was diagnosed as IDC after a biopsy. Then the surgeon noticed a huge mass (area felt like 11cm) on the top of the breast and sent me back to for another ultrasound, this time with another radiologist. This was this past Tuesday, the 29th. He scanned the same breast and started sighing loudly. Then he left the room quickly. I could see huge images on the ultrasound screen. 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. It's like falling through the air with nothing to grab on to.
He had found 2 more lesions and being that they were so close together he measured it as one and it's about 4.28cm. So it's multicentric because they're in different quadrants, I think. He biopsed both and put in the metal clips, then I had a mammogram. The first technician messed up and they called in another to do the images all again. By this time the incision site for the biopsy was bleeding again. Oh, the doctor listed this tumor as Bi-rads 5, IDC, which is fine since I already knew about the other IDC.
This morning I saw blood on my bathroom mat and realized I was bleeding again so I just stopped by the hospital after calling them earlier, and the same doctor came in and did another ultrasound. He made his faces again and said that what I feel is the cancer spreading. Then he zoomed in on a node that was big and took a picture. From his reaction it appears that it's spread to this node - it's at the top of the breast, not the underarm. I told him the area was hard where the biopsy was done and he said that it's the cancer spreading. WHOA! Since Tuesday. He told me not to wait and to get it out as soon as possible, as if I can do that. My surgeon is away until next week and he doesn't seem concerned about the amount of time that this is taking.
I'm freaking out because of the node. I'm also wondering if it could be swollen from the biopsy. And how fast can IDC travel in 3 days?
He said I don't have a hematoma but as I sit here it's dripping again because he had to push hard with the ultrasound want because it's deep in my dense tissue. The first biopsy wasn't as bad but this was a double one. Not sure why the mass is so big but I don't think it's a reaction from the tumors. He said there were no more in there and that he felt that I should go for a lumpectomy, which I'm not. It'll be masectomy, chemotherapy and radiation if need be.
Dana Farber can get me in on June 17th. My next appointment with the surgeon is on June 8th as he's travelling.
Anyone know of any BC walk in surgeries?? LOL. The last thing he said was to think about my life and what I was going to do. Is he an alarmist, geez.
I'm shaking as I type and don't know where to turn at the moment. Sorry for the book.
Comments
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I would ask for a referral to another surgeon asap. please do not apologize for the book.. that's why we are here. 'Your' surgeon can certainly be supplemented with someone who is available. My surgeon retired. I don't really want someone who is 71 cutting on me anyway.
Someone in some office should be able to point you in the right direction so it can be taken care of this week. It's only May 31st. and of course surgeons can be booked quickly.. if not one, then another.
I wish you speedy luck and resolve of your issues.
It is scary isn't it.
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Hope, I can't help with what you really need as I am not in your country. I think the guy you are seeing is behaving in a very unprofessional way.
You need to see a medical oncologist - the surgeon/doctor seems to be out of his depth. Sighing and making faces helps noone. It is ridiculous to tell you to think about your life... crazy alarmist arse$%%^. I am probably wrong but have never heard of BC travelling so fast.... I think because your treatment sounds so hit and miss the surgeon/doc is trying to cover his butt by not getting a proper work up in the first place. You need a mammogram and ultrasound not hit and miss rubbish relying on where a surgeon happens to feel. I think you need to see a new team but in the mean time breathe.... stay on the boards and distract yourself with whatever works. I guarantee you will not be dead in a week
I had a lot of bleeding from my biopsies - I was in an Avastin trial and had a total of 6 x 5 punch biopsies. All left me bruised and bleeding ... but that poor old damaged boob is gone now
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Well I never heard of a drive-thru McSurgery---but as Apple said u sould be able to find someone who can see u ASAP--but first take a deep breath and put this in perspective. U can be treated sooner and u'll feel more relaxed whatever they do--cuz then u'll know. And sometimes things arent as bad as they seem. Good Luck
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I understand you fear . . . I remember it well. The hardest part is in between being diagnosed and having a treatment plan. Depending on the hormone recepters of your tumor, you may even need/want chemo prior to surgery (a lot of us triple negatives have that done). In the meantime, ask around to see if there are other breast surgeons you could see in your area. There can't be just one. And you need to see an oncologist. It's very important that you have confidence in your medical team. You need to be your own advocate. I know it's a lot right now, but just keep putting one foot in front of the other. Where do you live? Maybe somebody from this board is from your area and can give you some advice about doctors.
Take care,
Kathy
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Hope, sorry to hear you're going through this. Take a deep breath. The doctor was acting in a completely unprofessional manner. You're going through hell, you don't need an alarmist jerk making things worse.
As far as I know, and that isn't much, but the hardness you're feeling is probably from the bx site. Mine was small but still hard. You're feeling the cancer spread? Uh, really? My breast surgeon told me that it takes years for it to grow. I know not all cancers are the same and some are more aggressive but sounds like the doc you saw needs a bit of a refresher.
You have to trust your medical team and have confidence that they are doing the absolute best for you. Keep breathing, it will work out. Take care. -
I am in the uk so can't really help with specific doctors but when I saw my first surgeon he was a) very old and about to retire and b) scared the life out of me with the way he talked (a bit like your chap). I didn't know where to go but my sister suggested that I phoned a 'centre of excellence' so I phoned the Marsden in London. I saw an am amazing surgeon and he managed to book me in for surgery about 3days after my appointment. He is really well respected but still managed to find me a slot- it is possible to find surgeons who are really good who will still find the time to see you.
Have you got a well know cancer centre near you? Can you just ring them and ask to speak to one if their consultants?
I din't think I've ever heard of cancer spreading in 3 days. The nodes are there to 'mop up' cancer cells and stop them getting into the rest of the body. If your cancer has just got to your nodes (and that didn't sound like a definite) then you must surely have some time before the nodes allow it to move past and spread further.
Good luck, I hope you get to see someone who is a lot more supportive very soon
Melissax -
Hope999, is this the radiologist who is sighing and making faces? I think whoever is giving you this kind of treatment and "information" is less than qualified to do so.
If it were me, I'd find an oncologist who can work through some of these issues with you. In some cases, oncologists will recommend treatment alternatives or complements to surgery, both for their efficacy and superior outcomes, and because it allows them to see what is working.
My oncologist managed all of my care, coordinated with the surgeon, and kept me informed on everything related to my future. Sian65 is right, in this country we tend to get referred to the surgeon right away, because our gynecologists--who usually initiate the referrals, operate out of a surgical model, not a medical model. I did ultimately have a bilateral mastectomy and chemo, but declined rads.
It was a very nice radiologist who told me the results of my pathology but he was not prepared to do any more than that; he had no idea how many kinds of cancer their are, how fast or slow they move, or even whether I should see a surgeon or an oncologist, so I figured it out with help of my girlfriends. The best advice I can give you is to ignore whoever this is and make an appointment with either a different surgeon or an oncologist; you are not being treated the way you deserve to be treated.
Warmly,
Cathy
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I can't believe that a radiologist at Dana Farber is behaving this way. Is this the place you are referring to?
My surgeon in Boston is an amazing person and doctor, but I can't imagine that she would be able to take you any faster. The really good doctors don't just have "openings."
If you will be having your surgery at the Dana, call a nurse navigator on Monday and have them walk you through what you can accomplish during this wait. [I have never heard of "feeling" the cancer move. I can't dismiss it completely since I don't have an MD at the end of my name, but say it outloud. Doesn't that sound foolish?]
PM me if you want my surgeon's name on the off-chance that she has an opening.
*susan*
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That radiologist is a jerk. Bear in mind radiologists aren't oncologists, he shouldn't be making any assumptions about cancer at all. He feels the cancer is spreading? What a dick.
I'm not at all surprised the mammogram made you bleed after the biopsy, if it was a core needle biopsy you should have had pressure on the biopsy site for 10-15 minutes and then taken it easy for the rest of the day. I don't know why it would have been bleeding the following morning, but there's no way it's from the cancer getting bigger, maybe because you weren't allowed to heal up properly after the procedure?
I'm sorry that you've been treated so unprofessionally. Hopefully your surgeon will now have enough information to act and you won't require further tests before surgery. I would completely disregard everything the radiologist told you, and I would repeat his words to your surgeon so he/she can give him a dressing down.
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Hope.....all I can offer is bless your heart, sounds like you've been through the ringer. And in my opinion, the radiologist doesn't have any business scaring the crap outta you by his nonsense! I would also tell the surgeon what he's said,.....he needs to be reported so he'll stop giving medical advise since he clearly doesn't know what he's talking about!
Having breast cancer is bad enough without being treated the way you have been. It's scary enough without someone opening their mouth when they have no clue what they are talking about.
I'm praying that you are having a better afternoon and get the medical care you deserve.
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Thank you so much. I'm still shaking. I live in a tiny island about 7 hours from England so I'm at the mercy of those who work in the profession here. Dana Farber is where I'm trying to get to for treatment right now. I would eventually have to go there because they do not offer radiation here, nor do they have a full time oncologist resident. Two take turns and fly in and out.
My surgeon seems to think that time won't make a difference, but this radiologist has his guns blazing. When he rushed in to do the biopsy on Tuesday it was almost as if he had paddles in his hands ready to revive me.
I appreciate you telling me that he should not be suggesting any treatments and that it should be up to the oncologist. He last words as I walked out was that I was now at the point where I need to decide what to do with my life. Um, take my upstairs to the operating room right now. What else can I do?
Sorry, but I'm so frustrated and two months is a little too long for this torture. I have no idea what stage I am, and no idea what this next biopsy report is going to say. It just can't get any worse - I hope.
I'll read through your comments again when I'm more calm. I would prefer to have the chemo first just to catch anything that might be travelling around now, so that's a very good point.
Can anyone give me an idea how long the chemo may last and if it's usually before or after radiation? Also, will I need both after I have the mastectomy (just the chances, I know you can't recommend).
Thanks, I appreciate you.
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There are many breast specialists that will be unavailable this next week because the annual ASCO conference is on in Chicago, and most "good" specialists will be there hearing about the latest research advances.
I think the radiologist is an idiot personally. Very unprofessional. It is perfectly possible for the site of the biopsy to be swollen and sore and to have a build up of blood so soon after the biopsy. I had my biopsy on the 1st of December and my lumpectomy on the 7th and the report stated that there was evidence of blood and healing at the internal biopsy site.
My surgery was only fast because my BS was going to be away for weeks over Christmas and I panicked about getting it done fast. In hindsight I wish I had waited those weeks and taken more time to look at my options. I now realise it may have made a difference to my chemo treatment as it is now not uncommon to do chemo BEFORE surgery which gives the advantage of being able to see if the treatment is working for your particular cancer. For this reason it is IMPORTANT that you talk to an oncologist BEFORE you have your surgery.
Also, instead of being rushed into a lumpectomy I would have chosen a double mastectomy (which I am now probably going to schedule early next year).
regards Jenn -
Jenn, I suggested that I wanted the full works, but he said that there is no difference in it re-occurring in women who chose the lumpectomy vs mastectomy. I find that hard to believe. Maybe he's talking off the top of his head.
I like my surgeon but he is saying opposite to the radiologist. He says that it's not going to change any treatment plans between now and when it gets done, in other words the cancer won't change that much. That's interesting that the doctors are at the conference, no wonder DF couldn't fit me in until the 14th. Hopefully by then they will have learned some new tricks to use on me, lol.
Still freaking out because my little biopsy cut is still leaking. It's pus-like stuff coming out and I'm wondering if this is a good thing just in case there's infection in there from the clips (which could be causing the new hardness). The radiologist didn't address the leaking yesterday.
It feels a lot better today and doesn't have that fullness and heaviness as it did yesterday, but under my arms still feel full (not as much). Trying to take it easy today because I think I overdid it after the biopsy by cleaning and lifting things Thursday night.
I swear you could go through this a hundred times and never get used to it. And to think, I haven't even gotten to the part of finding out the stage and progress of it. How did you all do it??? lol
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Hope,
So sorry you are going through such a rough time with the "professionals" that should be helping you! It sounds like you've at least had a talk with your surgeon now and that some treatment plans are in place. I agree with you that mastectomy and lumpectomy ARE different and DO affect the recurrance.
Because we were in the middle of selling our house and moving from Hawaii to Arizona, I had to wait two months to just find a breast surgeon. Then it was another month until my lumpectomy. Of course, having a father-in-law on his deathbed, a daughter planning a wedding and our moving gave me various distractions too. . . Then I had a run-in with the breast surgeon and her staff and had to find another breast surgeon (in a new location). It was all very stressful. I ended up having a mastectomy in January (8 months after initial diagnosis). This all to say, time is on your side - breast cancer is rarely an emergency situation.
Back to you: the bleeding and "pus-like" leakage sounds like an infection! Is the area warm? Are you running a fever? A trip to the ER might be in order. If there is infection, you should be on antibiotics.
btw, I've never heard of anyone "feeling their cancer grow". I hope things work out for you.
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Hi Hope: So sorry to hear about all you're going through. I agree with the others that the radiologist sounds like a jerk.
As for the hardness -- I'd suspect that's from a blood clot forming at the biopsy site. After I already had a cancer diagnosis following a biopsy on my left breast, I was sent for a breast MRI. That showed four additional suspicious areas which I also need to be biopsied. These were done as MRI-guided biopsies and when I had the two done on the right breast, I ended up with an enormous haematoma. The area around the biopsy site turned hard and the entire breast went through a number of color changes finallay settling on purple. The hardness and discoloration lasted for months. And the biopsy showed that both suspicious areas in that breast were benign. Are you seeing much discoloration on the surface of the breast? A little yellowing is to be expected but if there's a lot then there might be a hematoma. i was told afterward that the nurse didn't apply enough pressure after the biopsy to staunch the bleeding. Pressure should be applied for 10-15 minutes.
The clips themselves will not cause hardness. They are tiny -- about the size of a tiny midge. And they are sterile (or should be) when inserted.
The oozing might indicate an infection. The last time I had a biopsy, although I didn't have oozing, the needle-entry site looking pink and it was warm to the touch so I was given a prescription of antibiotics.
I do hope you can get to Dana Farber. Mid-June doesn't seem that long to wait. Do they want your records ahead of the initial appointment? If you get your records to them I presume they will review them beforehand and they can decide if you should be seen earlier. I know Sloan Kettering does medical records reviews for International patients. Maybe Dana Farber does something similar?
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hope
kinda sounds like an infection - cancer doesn't grow or spread within 3 days....this guy is covering his butt i think. go to er and have someone look at it. sorry you having to deal with this on top of everything else.
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Hi Hope, it is tough for you so long from the mainland. Do you know if any one else on the island has had BC - hooking up with them could be a blessing. Also maybe you should get onto the UK BC webboards - there might be someone close to you who can help.
Can I suggest something - writie down all the things these jerks have told you and then burn the list
You have had a really bad introduction to this BC stuff - I think the problem maybe that these guys have no experience and are actually rather excited. I recommend that you do DO NOT let them treat you in any way. Scans ok but nothing that breaks your skin. That said a badly done ultrasound can cause an infection (i.e. from pressing too hard). I understand you are in the middle of nowhere but realistically the work up for BC can be done over a couple of days and maybe you should just plan to spend 2 weeks on the maibland to get everything in place then you can go back home.
It is impossible to say what your treatment will be - too many variables, which and in what order. A lot of chemo can be done orally from home and lumpectomy/mastecomy only needs an overnight stay. Rads are the problem as they are daily for X weeks.
I know it does not seem it now but 2 weeks really is not going to make a difference - That said you need to check that you have not got an infection from the biopsy - check your temp and go to a doctor if it is over 38degrees for more than 1 hour.
Stay in touch - I'm an Aussie living in Sweden
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I agree--the diagnosing radiologist is completely unprofessional. I'd find another. Is your surgeon a general surgeon or surgical oncologist? I found a BC surgical oncologist--all BC, all the time. At a minimum it would help to go to someone who does these procedures often. You should try to get a breast MRI prior to deciding on your surgery. That has better resolution than a mammo. Obviously we hope there's nothing else there but if there is, you want to know prior to surgery. And yes biopsies can create local imflammation so the symptoms you feel may be due to that.
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BTW, I know someone living on the Hawaiian island of Kauai who moved to the bigger island for a few months during Tx. Not ideal but there are options. Good luck.
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Hope
I would agree with all here-- dr. sounds like a jerk. But, you need to focus on what you need. first things first-do you have a primary care who can precribe some anti-anxiety drugs for you for this part of the process? It really can help you and will calm you down and help you sleep.
For the rest of your visits, no matter what or where, I highly recommend that you bring a digital voice recorder.... that way, as your anxiety rises (we all get it!) you will at least have it recorded and you can listen to it at your leisure-also have a list of questions with you.
I had my lumpectomy at Mass General and my treatment at Dana Farber.ou You should ask the surgeon to have an oncotype test done on your tumor-- that will help you decide about chemo. I had chemo 4 times, over 8 weeks, 3 week break, then radiation for 6 weeks, every day (not weekends). It is all doable.
You are at the hardest moment-- you don't have enough information and your medical team is not in place. As you put the pieces together, you will feel better. You are the boss of the process---
keep us posted
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Hi Hope:
I was told by my MO and breast surgeon that the 5 year survival rate for my type and grade cancer is the same whether I had a lumpectomy or mastectomy. I chose lumpectomy and the reason I did is because after a lot of research, it was best for me. I figured if the survival rate was the same, I would do the "little" surgery since I could always have the "big" surgery if it was ever needed. I was afraid if I chose the "big" surgery, I would always second guess my choice.
I absolutely love the whole team that has treated me! They made this journey so much easier by their caring attitudes and reminding me all along that any decisions were MINE in the end and they were willing to do whatever I felt was the right choice for me.
I'm praying that you find a good medical team since thatmakes all the difference in my opinion.
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I now realise it's misleading when the drs tell us that "lumpectomy" and "mastectomy" have the same stats when it really should be stated that the stats are the same for "lumpectomy with radiotherapy" and "mastectomy". And then you have to realise that the rads can have very significant long lasting side effects....
Jenn -
Hope -- i pray you are feeling much better today.. I never can 'take it easy' after a procedure.. I've learned tho.. i think i have a mastectomy coming up and I swear, i am not getting up off of that couch for 2 days. If your area is still warm and leaking, i would see a doc about it... maybe keep cool washrags on it in the meantimes.
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Hope, I think you should make a list of all the unprofessional things this radiologist has said and then don't burn it, write up a letter and let hte hospital and clinic and his professional organization know.
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I have another stupid question----Isn't the radiologist the Dr. that give u the radiation treatments at the end of all the surg, chemo etc--Why is everyone meeting their rad. Dr. first--I never met mine til the end and he certainly didn't give me any results from anything. My surgeon gave me all my results and my onc. gave me all the treatment results. I had nothing to do with any other Dr. during all that time.--Besides my GP
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No. A Radiation Oncologist does the radiation treatments. The Radiologist is the one who specializes in imaging... mammograms, CT scans, etc.
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Cam: the first is the radiologist who does the imaging, biopsies, etc. The latter is the radiation oncologist. Two different animals.
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Hope, I get my treatment at Dana Farber and am so glad I went there. I was dx w IDC in Dec 2008. I had an ultrasound done on the other breast which was proven (HA) locally to be a CYST. It was not. I had IDC in both breasts. Took myself right down to DF but had to wait a couple of wks to get an appt as the doc was on vacation. Cancer does NOT spread that quickly.
So I googled "does dana farber treat international patients" and here is what I found.
- Home
- Adult Care: Treatment and Support
- Patient and Family Support
- International Patient Assistance
International Patients
Every year, thousands of people with cancer from around the world come to Dana-Farber for their care.
If you live outside the US and wish to make an appointment at Dana-Farber Cancer Institute, please complete this online form or contact the appropriate person below:
Adult patients
Kerin Howard, RD
Brigham and Women's International Office
617-732-5777Pediatric patients
Boston Children's Hospital International Health Services
617-355-5209Good luck. This story of yours is the most bizarre thing I have ever heard. The radiologist is odd to say the least. Keep us all posted, Sue
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Jennt28 wrote:
I now realise it's misleading when the drs tell us that "lumpectomy" and "mastectomy" have the same stats
I agree. And it's not always clear which stats they mean. In my case, it's survivability, which is an important thing. But of course, risk of local recurrence is going to be higher if you have lump+rads vs. Mx.
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Jen/Cindi---OK I thouht they just interpreted the biopsy and scans--My surggeon did te biopsy and onc ordered the scans--I never met anoter Dr. That's why I'm always wondering why all these Drs. get involved---I know behind the scenes they are but I never met anyone in person.---My surgeon and onc. treated me as if I was their only patient and with such caring and kindness, I just can't imagine all these other Drs. treating anyone any other way And when I got my rads and met another Dr. he was wonderful and so were all the techs. I feel so bad for al who have not been treated well.
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