Lumpectomy Lounge....let's talk!
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I will say that my Oncotype test had to be done in California and it took over two weeks. But I had my lumpy on Wednesday and by Friday dinnertime, my surgeon called with my path report. It was lovely not having to worry over the weekend. I can't imagine how awful waiting longer must be.
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Trudi, this is one place where I really wish we had a "like" button. Yes! You are so right. Rekidal, this is unconscionable. Allicat, I can't imagine how stressful this must be. I so hope everyone who is waiting for these truly life-changing reports gets them soon! And fingers crossed for all good news.
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Tgtg, The hospital I went to was in network, so the insurance company shouldn't have been a factor. The hospital ran a series of tests, etc. on the tissue. My doctor's office told me that sometimes they send the samples to other labs to verify diagnosis. It is strange that the Mass hospital did their testing then sent it out, then those hospitals sent it back and more slides were sent back out again. I expect I will be getting a bill from those labs at some point, because they were not in network. I ended up switching surgeons and hospital and now I get my report in under 10 days, which isn't great, but a lot better.
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Hi. I had lumpy and SNB (2 nodes ) last Friday. My tumor 6 mm was in axillary tail to right of right breast. I don't know any details re the surgery because my hubby was too relieved I was out to ask. BS was gone when I woke. I feel like I am carrying a water balloon on my chest. It is very swollen and horribly painful to stretch out my right arm. It feels like a burning tearing pain. Hard to sleep even though I have drugs and a boob pillow. The meds have messed with my GI tract so nothing is moving.... So much fun all this is. And I am just getting started, I know... Not whining, just sharing. The BS made it sound like the surgery would be a piece of cake and I will be back to my normal somewhat calm /dull life in a day or two. Not exactly..... I tried to find a bra that would work but haven't had any luck yet. I am wearing a cami that is not offering much support but it hurts too much to have anything too tight on. Wouldn't it be nice if the surgeon office called to see how you are doing? Haven't heard from them but I do have follow up on Friday. I hope they have path reports back by then. Every step of this process seems to take so long.... Then again, not sure I am looking so forward to the next process and / or drugs. This stinks for all of us, but nice to read I am not alone.
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Tgtg, I just had another thought regarding insurance companies. Prior to my routine mammogram I called the insurance company to find out if it would be covered. I was told they will pay for a mammogram, in full, when it is routine. However, they told me if they find cancer it becomes diagnostic and I have to pay for it as part of my deductible. Talk about kicking you when you're down. Ridiculous!0 -
Peggy, did you have the Oncotype testing because you were dx IDC? When I asked my BS she told me it wasn't necessary for DCIS.0 -
Susie, it isn't a piece of cake, but you will feel better soon. Go find some front close bras, being snug will help it feel better. The swelling doesn't go away for a few weeks, and the tingling in your are can be around for a while. Read thru some of the past posts for other advice, this place is full of it. Hugs and hope you feel better soon
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Rekidal, Yes, that's why I had an oncotype. I requested it, in fact. The BS and most of the tumor board didn't think it was that necessary; they were convinced chemo wouldn't be needed. However, my score gave me peace of mind that I really did NOT need chemo. DCIS means that the cancer is contained and hasn't spread. Since mine had spread some, the test was covered and done.
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Peggy, that must have been a huge relief. I know that getting negative results on my BRCA testing gave me peace of mind, especially having two daughters. The geneticist recommended that my older sister be tested since she had BC at age 34. They told me that if she is tests positive, that would make mine a true negative. I really don't understand how that works, but she said she will check with her insurance company to see if they will approve the testing.Susie, bikerbabe is absolutely right about the front closing bras. I purchased a couple of zip up ones at Walmart. It makes a big difference. I hope you feel better soon.
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Susie2015, From your description of the arm pain, it sounds like you had an axillary lymph node dissection (ALND). Even if you didn't, please read that forum for helpful tips to relieve the pain. I was surprised when I woke up from my 1st lumpectomy at how much pain the ALND caused. And my surgeon said nothing about it the before surgery.
That water balloon feeling is a perfect description of a seroma, which my surgeon says everyone gets. It is fluid that fills the cavity left by the surgery. Usually it dissipates by itself after several weeks, but some need to be aspirated by the BS in his office and it gives instant relief to that poor little lady. I'm sure tomorrow can't come soon enough for that BS appointment.
For the constipation, drink water, water and more water...Senna tea, stool softeners, Sennakot-S, prune juice, organic coconut oil in your coffee, then more water! The Big C is miserable, especially when you feel like you do.
I am so sorry you are feeling this way. I can assure you it will get better. For now, keep up with those pain meds, listen to your body, and try warm or cool packs (but remember you are numb in spots so watch temperatures).
For tomorrow's BS visit, have DH ready with pen and paper, with a list of your questions. Don't let the BS leave that room until he has explained everything about your Final Pathology Report. If you have clear margins, BS will release you to your chosen Oncologist. If you need another surgery to achieve clear margins, I assure you, it is so much easier than 1st surgery (no more SNDs).
Unfortunately, what you are experiencing, many of us have also endured. It is depressing and shocking, but it is temporary. Please accept my gentle cyber hugs and please keep us posted. Becky
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Rekidal, yes it was very reassuring. I certainly get how relieved you were that you didn't test positive for BRCA genes. I'll bet you felt like you could breathe! Hopefully, your sister's insurance will approve testing. It is scary but perhaps it gives you the tools to help plan your future.
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Rekidal, this is yet another trick insurance companies have devised to shift more of the cost of our health care onto policy-holders, even as we continue to pay their pricey premiums. It works this way for a range of "preventative" screening tests, including colonoscopy. Because my grandmother died at a relatively early age from colon cancer, I'm considered at higher risk for developing it, so I've been very careful to have the screenings as recommended. Before the last one, I called my then-insurance to make sure I was covered, and was told the same thing you were. It's totally covered as long as they don't find anything—in this case, it would be a polyp, which would be removed during the screening and prevent having it develop into a cancer. But, Catch 22, if they do find a polyp, then automatically the test is retroactively classified as a diagnostic procedure, and is not covered. Of course, you can't know what the outcome will be going in, so you just have to take your chances, and risk being on the hook for a very expensive procedure just to do what you're supposed to do to prevent colon cancer, which would cost the insurance company a whole lot more money down the line if it happened. It makes no sense. Of course, with my last "screening mammogram," same thing. Since the calcifications were found, it became a diagnostic mammogram, plus I had to get TWO more diagnostic mammograms and a core needle biopsy before my Lx. And rads to start next week. Despite having "good" insurance, I'm going to be paying a lot of big medical bills this year. They will keep coming until I've met my maximum out-of-pocket amount—by which time I'll probably finally be old enough to qualify for Medicare. Go figure.
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Susie, this sounds very uncomfortable. I can only guess it's from your SNB, which I avoided having as my BS didn't think it necessary for DCIS. So without that aspect of the surgery, I really did bounce back quite quickly from my Lx. I hope you feel better soon, which many people here who've been where you are say you will.
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Rekidal--Insurance coverages vary, and each type of policy/coverage has its own rules, even under a single umbrella company, Even if a procedure is done within a network, the company still determines if it is covered, whom it will allow to perform it, and how much of it will be paid by the company and how much by you. Sometimes a lot of the discrepancy between policies comes down to the generosity (or miserliness) of an employer that is providing it; sometimes it comes down to which type of policy (and its cost) that an individual has chosen.
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Sorry I haven't responded sooner. I live in Kentucky and we had 6" of snow and really cold weather. That was last week and we are just now seeing some ground. My internal site was at 9 o'clock. When they drained it they said it would more than likely fill up again. It does not hurt all the time. I see my oncologist in May so I will talk to her about it. I appreciate all of your comments. It was very hard loosing such a young friend.
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Susie--Sorry you are so uncomfortable right now, but you will feel better soon. To ease recovery, even before the lx, my surgeon practically ordered me to wear a supportive bra 24/7 after surgery--a roomy old bra or a sports bra, both preferably cotton, were his particular suggestions. And, as bikerbabe says, the support is really helpful after surgery--as long as you don't use a bra that you need to squeeze yourself into like a sausage (hence the roomy old bra idea). And you can cut a slit in the bra at your snb incision site if a bra rubs there.
As for your constipation, HYDRATE, HYDRATE, HYDRATE! Your body has had lots of chemicals (anesthesia esp.) assaulting it and it needs the water tio flush all that c--p out, and needs even more if you are using pain meds, even Tylenol. Carrying a water bottle wherever you go is a good idea, right thru rads too, since your internal fluids are being used up then too.
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Hi All, Had reincision yesterday. Feeling pretty good today. Fingers crossed for clear margins this time around.
Should have Path report by Tuesday.
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CarrieK30. Glad your reincision is done. That's great that you are feeling pretty good ! YEAH!!! Definitely thinking positive: clear margins and fantastic path report!!!!!
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I feel so humbly blessed.... although the results took a full 14 days, they are good.
Cancer did NOT spread to lymph nodes. And all margins are clear!! It was considered a low-grade tumor & not aggressive. I have my 2 week follow up appt in the morning so I'll get a printed copy the results and next steps from there.
Thank you all for concern, support, and prayers!!
Praying for all: those still waiting for results and those with results looking at next steps.
And bless my BS' nurse!! I called again this morning (3 days in a row now) and she called me back just now and said usually we have the doctor give results but he's in surgery all day and I know you've been waiting. So I'll go through it quickly and he'll likely call you later this evening.
Phew.... no onto the next step which he had said would be radiation. Guess I'll get details and set an appointment for an oncologist tomorrow.
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Susie,
So sorry you are hurting so much! It scares me for my surgery next month. When you are in so much pain, the last thing you might want to do is put a bra on, but it truly may help after a bit. The stability may make a differnce, especially if you are not an A cup. Miralax also works wonders for C, used it throughout my chemo, totally dissolvable and tasteless. I took a dose or three every day, especially if on pain meds. That will ease your discomfort too. Hopefully tomorrow, is they do drain some fluid, you will get some relief too. Gentle hugs for you. Treat yourself to some pay per view movies if you can't get out of the house, and you have that service. It helps to have some distraction from the pain, hang in there and give us an update
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congrats allicat! That is amazing news. What a relief. Soak it in.
C--Good luck on clear margins, finally, we hope. Glad you are not hurting to bad. But what a nightmare going for a third time. Hugs, and fingers crossed on path
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Allicat, Congratulations!!!0 -
Tgtg, I agree. Unfortunately, we are all at their mercy on what they will and will not cover.
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Allison, so darned happy for you!!!!
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Allicat, so glad to hear your good news!
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Alliecat....
Carrie.....hope this one does the trick...fingers crossed
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Yeah Allicat!!! Great news!!!
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got my path results today... Good news is that margins were clear so they got it all!! Bad news is that of the 3 nodes taken there was a very small amount in 1... Haven't gotten the written report yet and the very nice PA says that it's not necessarily a ticket to chemo... I'm pretty bummed. I really convinced myself I could dodge the chemo bullet. Will find out Wed when I go to meet with MO.
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Leigh, so glad the margins were clear. Bummer that one node was not. I don't blame you for being down. Here's hoping that chemo won't be necessary. Many HUGS and positive thoughts coming your way. More HUGS!!!!
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Met with my BS today. She said the incision looked good even though it opened a little on Wednesday and was bleeding. The path report wasn't back, but I didn't expect it would be. She called over to pathology and mine was the next on the list to be done. So, hopefully I will find out Monday or Tuesday. I asked her the dreaded if it is not clear question. Unfortunately, because of the amount of tissue that has already been taken, she said the next step would be Mx. Up to this point, her answer has always be an Lx. I was really hoping for that answer this time. I am trying to stay positive, but finding it more and more difficult after each surgery.Leigh - happy to hear you got clear margins, but it really stinks about the node. I wish you the best and hope that chemo won't be in your future.
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