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Author Topic: Please help me weigh the pro's and cons of mastectomy VRS. lumpectomy/radiation?  (Read 8741 times)

Offline Karen W.

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My Dearest Doctors and esteemed scientists who specialize in the very technical business of medicine and science goodness...in whom supports my favorite forum of knowledge on the Internet! Today I come to you just a bit over a week of being given a diagnosis of Invasive Ductal Carcinoma, (some of which is in situ still within the ducts or lobules) and some already have penetrated the duct walls and have invaded the surrounding tissue of the Breast!
 They are wanting me to decide on 1 of 2 methods of treatment. The first one consists of a partial mastectomy with radiation along with the takings of  a mamma lymph node and a few of its surrounding buddies to then biopsy to confirm or refute the presence of the cancer having invaded my lymphatic system...If the answer is yes to its spread or matastiziation into other organs or the lymphatic system then we would recheck the breast to insure the cell removal and rethink the plan and go to option B.A full mastectomy possibly two.. wth radiation and, again, checking lymph nodeds at this point..If cancer has gone systemic then I will be seeing both radiologist and the chemo therapist I met day before yesterday.....So I have been told that over a 5 year survival rate the total mastectomy gives me 5 % more chance to survive and five percent less to go with a partial lumpectomy!
So what I need are more pros or cons toward each proceedure...so the only advantage I see is that the total illiminates having a second surgery and gives me a 5% better chance of living 5 years or more...Are there more issues involved that I can base my decisions on...like is that 5 % advantage worth the extra protection..how often does it turn out that, that little difference could be the difference between life or death? I am not looking for Diagnosis and I haven't been staged yet due to needing a lymph node verification one way or the other? So could you guys add some things I should weigh in with this. such as will it put a strain on heart more with the full mastectomy  and my aneurysms or would it be better for me not to do surgery twice..etc. Perhaps you may know of any benefits on one or both procedures!...
« Last Edit: 02/03/2015 10:13:19 by Karen W. »


 

Offline evan_au

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I'm sorry to hear that. I can't imagine what you are going through at this time.

Have you had a gene scan for BRCA1 & BRCA2, and also eligibility for Trastuzumab treatment? You would need to follow this up with a discussion with a genetic councilor (and it's probably worth having a chat before you have the test - sometimes knowing your genetic status won't change the treatment).

This might help you make a more informed decision.

Angelina Jolie made world news when she announced in 2013 that she had a double mastectomy (despite having no current cancer), because the lifetime risks seemed too high, given her family history and genetic status.
« Last Edit: 28/02/2015 02:13:33 by evan_au »
 

Offline Karen W.

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 Thank you so much for that.. It has been shocking but at the same time I have been in such bad health with my heart and lyme disease as well as biotoxin illness That I really should be well prepared for about anything at all. You know Evan_au..I thought they did the test, and my cancer surgeon said, that I do not have the gene, although my Cardiologist says, "once you have Breast Cancer, that it becomes an in your family gene", Anyway.. I am down in Paloalto right now using the computer at Standford... I have just finished  all my tests and had my ekg and I am free to go. He thinks that We can do the Radiation, and that the only problem that he might foresee, is that I am having a hard time with fatigue already, and that will be more severe. He believes that  the aneurysms are going to be stable enough, that with the treatments for radiation being so streamlined these days, that  He thinks the heart will do okay? He says they will have to just monitor the treatment more closely to assure that everything stays nice and stable.  So it looks like we will do the lumpectomy and that radiation will be on the menu at the start of treatment right after surgery. They will then remove the Sentinal lymph node with several of its buddies on each side to see if it has matastisized into the lymphatic system. It may have migrated to the liver, brain, bones or vascular system also. So we have to wait until she biopsies those nodes to really be able to stage me. So, as of this moment they have not determined what stage I am in at this point.  My course of treatment may yet be rearranged depending on what the biopsy reveals about the lymphatic system and how many of the nodes are affected....... I will post more as I find out myself!
« Last Edit: 02/06/2015 06:03:25 by Karen W. »
 

Offline Ethos_

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My Dearest Doctors and esteemed scientists who specialize in the very technical business of medicine and science goodness...in whom supports my favorite forum of knowledge on the Internet! Today I come to you just a bit over a week of being given a diagnosis of Invasive Ductal Carcinoma, (some of which is in situ still within the ducts or lobules) and some already have penetrated the duct walls and have invaded the surrounding tissue of the Breast!


My dear friend.....................I'm saddened beyond degree to hear about this diagnosis Karen. Just remember however, that this diagnosis does not eliminate probable cures that doctors are equipped to offer these days. Keep us informed about your progress, I as well as many of your other friends here at TNS will be pulling for you.

............................Ethos_
 

Offline alancalverd

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So far, so good. They are doing all the right things and you couldn't be in a better place to do it. If intraoperative radiotherapy is offered, I think you may find it less fatiguing - certainly involving fewer hospital visits - than external beam treatment.

Very best wishes for a smooth trip and a successful outcome.
 

Offline Karen W.

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Thank you Ethos...you are very kind... My trip went well and my surgery was approved, but not the radiation!  This was approved by my Standford Cardiologist...so now, I have been home about a month, and am still waiting for them to do the surgery.. My Cancer Doctor and Sugeon here, has just last week, scheduled a preop appointment for April 9th at 9:00 A.M. so surgery should be 7 days later.....because I have to be off a handful of my 36 medications for 7 days before surgery....blood thiners and other meds that can cause trouble during surgery or with anesthesia... I spent one day with the plastic surgeon feeling up, all the silicone implants etc..!  All the while, the doctor stomped on them with his shoes on and twisting his heel into them and everyhing...lol I take it, that an elephant can stomp on my breasts   and the damage would be bone crushing, but the new "Boobs" will be indistructable!!! lol.....He does not want to reconstruct my breasts with my own flesh and fat, because he says the risk of the breast portion of the surgery is hard enough but then opening me up at the tummy too. He thinks removing the excess fat for reconstruction from the stomache causes to big a risk! so I have to settle for  silicone...and some kind of stretcher cup for 3 months..then finish surgery in August after radiation is done and out of my body..... So Things seem to be moving super slow..I can't believe how long they have taken getting this surgery done....I will.let you know more after preop....
« Last Edit: 15/04/2015 09:17:46 by Karen W. »
 

Offline evan_au

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I have heard that treatment for proven breast cancer is now more effective than at any time in the past. So your chances are good. I look forward to a progress report.
 

Offline Karen W.

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Thanks Evan_au! I appreciate the support..I am bummed that the Plastic surgeon does not want to reconstruct at the same time as the surgery! I am already horrified at the loss of my own Breast and I understandvthe need to follow through and get this done but I have only seen one reconstruction that looked great, and it was not My plastic surgeons work...The re onstructions he showed me looked terrible and very scarred up..I went on line to see other reconstructions done at the time of surgery and they looked great with minimum scarring.... The ones he showed me that he had done were really shoddy looking but perhaps I am expecting more then I should expect? Do you think....?
 

Offline alancalverd

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Best wishes for a smooth ride..

Scarring is treatable at best, hideable at worst, and always more acceptable than the problem that caused it. Were the surgeon's images shortly post-surgery or after a year or so? The services I work with, employ breast counsellors (all female) who can talk you through options and prognoses more objectively than the surgeons (mostly male) - worth a chat if you haven't already found one. 
 

Offline Karen W.

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He showed me both new and 1 and 2 years out!
 

Offline alancalverd

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Time to talk to a counsellor, I think. A lot depends on the primary surgery result but presumably you have a choice of reconstructive surgeon and the timing of reconstruction - once the lifesaving is done, it's worth taking time to consider the lifestyle implications: as the saying goes, you're worth it!

This is the point at which I defer to any female expert and wish you the best possible outcome.
 

Offline Karen W.

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 Yes, I agree..she is on my schedule tomorrow after preop! Thanks Alan...You have given some nice points to think about and find out about..I appreciate your weigh in......
 

Offline Karen W.

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I have a surgery date of May 5th, 2015. 12 weeks later Radiation will start and go for about 6 weeks! We will know about lymph nodes by then...so thats up..Dr Spin Was worried about the radiation..I thought he approved it when he was talking to me but The surgeon said that he mailed him a disapproval of theRadiation Therapy over the aorta and Heart..

     So its now been since August when we found the lumps.... 8 months.... Is it common for it to take this long to begin treatment?
« Last Edit: 15/04/2015 09:27:16 by Karen W. »
 

Offline alancalverd

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Definitely time to consider intraoperative radiotherapy, then. The machines we are using in the TARGIT clinical trial are low-energy (50 kV) x-ray sources that irradiate the tumor bed from inside, so the dose to other organs is very low compared with megavoltage external beams.

The workup time for treatment doesn't seem excessive in the light of UK experience but I always wonder why there are waiting lists for anything: the demand  is adequately predictable and the treatment is pretty much standardised.

Best wishes for a smooth ride. It's a miserable process but a very effective one.
 

Offline Karen W.

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I am discussing it with my oncologist...Thank you.....I will update againvery soon!
 

Offline chris

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Karen - I only just saw this; very sorry to hear about this. If you want to discuss any of this with me personally, offline, send me a PM and we can arrange a time for me to call you, if you'd like my extra insights. The first job I did in my medical career was breast surgery, so I am reasonably up on the protocols.

Chris
 

Offline Karen W.

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Thanks Chris..I will do just that. i just had surgery on tuezday the 5th..They had some trouble intubating me...I am not sure why yet...then wednesday night I spiked a high fever with severe dehydration and a major headache..Checked back in to ER and they took new chest xrays which showed a bad case of pneumoniae..
.So I am  now on a five day dose of levoquin antibiotics to clear the lungs..Apparently when Dr. Mahoney went into the armpit she was unable to find the blue dyed sentinal node...She told my daughter she couldnt find it so she only took out a couple smaller ones..and thought that should be efficient? I have not gotten to speak to her since being in O-R after surgery....   I will pm in a day or two  my arm is not up to this tying and holding onto the phone....
 

Offline chris

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Hi Karen

glad to hear that you are on the mend.
 

Offline Karen W.

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Thanks Chris...I will pop in and send you a mail soon..thank you so much for all you do on this site...I THINK ITS THE BEST FORUM i have ever come across..in all my years online..So much good imformation about everything from kitchen science to mega complicated information on our changing universe and how our bodies work through just about anything you may ever want to know regaurding our world and how it works as well as all things living! Amazing!!
 

Offline Pecos_Bill

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I speak as a retired RN of 40 years.

It is gormless to pose this question here. I will tell you what I would tell my own daughter. Get a second opinion from the best specialist in Oncology that you can afford ---one who treats LOTS of breast cancers ----before you get more surgery. The proper regimen depends upon many factors which none of these people can know. You need a work-up by a pukka oncology specialist. Accept NO substitutes.

Surgeons are like hammers who see every problem as a nail.
« Last Edit: 23/05/2015 06:16:21 by Pecos_Bill »
 

Offline Karen W.

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I have never heard of a pukka oncology specialist! I did look it up, and I couldn't find anything really, to tell me exactly who they are, or what they do, or how they do it? Please explain, so I can understand?
« Last Edit: 25/05/2015 06:00:10 by Karen W. »
 

Offline Pecos_Bill

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Karen I am afraid that I have never gotten over reading Kipling and books about the British Raj. It has colored my speech all my life.

The "urban dictionary" defines "Pukka" thusly. "A slang-term used in British English to describe something as "first class" or "absolutely genuine".

So to use the Queen's English, you should get a second opinion from the best, most experienced medical oncologist that you can find and weigh his advice along with that of your surgeon. That's what I would tell my own kid...knock on wood.
 

Offline alancalverd

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I only know the pukka sahibs in Blighty but

http://drholmesmd.com/services/intraoperative-radiotherapy

seems like a decent cove, west of the Pecos - at least his website is informative. 
« Last Edit: 25/05/2015 14:16:36 by alancalverd »
 

Offline Karen W.

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Thank you Pecos For the explanation and information.

Thank you Alan for the link.... I am going to bring this to the table as they are wanting to wait for it to come back or pop back up and treat it as it comes back each time on an individual basis without giving any radiation or Chemo... The Chemo has been taken off the table because the Doctor said my body and I are in such a fragile balance that the chemo will kill me...She said it would go 100% bad not so so or semi bad nor good...So thats off the table..no lymph node involvement at this point and regular radiation will not work with all the different body problems pose an angle problem for the beam so thats off the table....but reading this link it says that they can put in a heart and kidney protection shield for the treatment to save and insure that those organs remain safe from the intraoperative radiotherapy..It does however mean that they will have to reopen the surgical site....to administer this... Which seems better to me then wait and watch for it to come back..I can't handle that stress! I will  make it a priority to get them on board...

Chris I will inbox you I would love to get your thoughts..and would appreciate all you have to say..I am totally confused and troubled about just wringing my hands together waiting..I feel helpless...Because here we have done the lumpectomy that turned out a partial mastectomy...but I am stage 1 but I dont want to wait till the stuff matstisizes then treating that new outbreak...so worried it will get out of hand and I will end up in a stage 4 situation without radiation of some sort!....Thanks..

 

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