Member has chosen to not make this information public.

Posts (241)

3 days ago · How many of you have changed oncologists because you did not like the? in Breast Cancer

Your health and well being are too important for you not to be comfortable with your doctor and their practice. As hard as it is when you're scared, frustrated and overwhelmed by the cancer diagnosis, you must feel confidence in your doctors.
I started out with LCIS – Stage 0 breast cancer essentially with an oncologist I loved. Then my insurance changed and I got an oncologist who suggested I just 'watch that lump' that I'd found in my breast…..not….'let's take a look and make sure what this is'. Well, I changed oncologists, had the tests and I had Stage 1 invasive Lobular. Had I waited I might have been at Stage 2, 3 or worse. I then proceeded with bi lateral mastectomy, etc. with the second oncologist and changed when this same oncologist walked out of a meeting with my husband…..right in the middle of his appointment for Stage 4 terminal cancer to see 'a really sick patient'……..yup……….there are some less than stellar doctors out there. My husband and I now share the third oncologist and he's great.
If you choose to stay in the practice or with your doctors it's important that you ask them to explain everything they are doing for you, in detail. That way YOU can make an informed decision. If they are not doing that and you don't feel comfortable, those doctors are NOT doing their jobs.
Do you have someone who can go with you to appointments to take notes, ask question and with whom you can bounce ideas off of? It's hard to understand and hear all the information when you are the patient who also has to process the difficult news.

6 days ago · Arimidex in Breast Cancer

sparklegram – Recurrance on AI's……that's a very good question. I'd like to hear about that as well….anyone?

6 days ago · Rennie: cancer with unknown primary in Cancer

Rita, Prayers to you and your daughter as well. It's hard to watch my husband suffer and I love him very much but……..if it were my daughter, it would be even worse (my daughter is 31 and healthy thank goodness).
The chemo causes many side effects and the neuropathy is one of those…..I'm sorry your daughter is suffering so much with that now. If chemo is stopped the neuropathy may subside but that's the 'catch 22'……then you're not treating the cancer.
My husband's cancer doesn't have genetic markers (right now) that would let him use immunotherapy or targeted therapy. Also, due to his age I think they are being less aggressive about treatment options. With your daughter being so young, she may have more options.
There is a type of treatment that is quite new and quite difficult for some people but is especially good at eliminating cancer, "Car T-Cell" therapy. Mayo may have that available. It seems to completely eradicate blood cancers (like lymphoma and leukemia) and now they are using it for other cancers to excellent results. They actually remove the patients own blood, treat it to fight the specific cancer with T Cells and then put it back in the patient. The effect can be quite strong on the patient (fevers, etc) because you're ramping up the immune system drastically but it can completely remove cancer. Don't know if that might be an option for your daughter but it's worth asking about and researching. I asked for my husband but they felt he wouldn't survive the process due to his age and other conditions. I also don't know if it's applicable to CUP.
Did they give you any 'options' on what the cancer might be? For my husband it was possibly lung, possibly upper GI types (even though it only partly matches each type). At least that narrowed it down slightly.
Many cancers spread to the liver and lung when they first start to move through the body. Spread to bones is common in breast cancer….also there are specific bone cancers and blood borne cancers like leukemia. Hopefully the doctors have looked at all options.
I will be praying for your daughter and your family and I'm sorry you are going through this.

6 days ago · Rennie: cancer with unknown primary in Cancer

Hello Rita8898………Colleen has shared your post with me. I'm sorry your daughter is going through this and your family as well.
My husband was diagnosed with cancer about 16 months ago. The tumor is in his lung and a nearby lymph node and the cancer is circulating through his body (via the lymph node). After numerous biopsies and scans they cannot identify the type of cancer he has. It doesn't match lung cancer (the only site of the cancer) and it doesn't match any other specific type of cancer but has some elements of an upper GI cancer. We continue to scan every 3 months and no obvious spread has occurred (no other tumors or specific sites of cancer activity). Because they can't identify the cancer my husband has opted not to do chemo because they can't pick a chemo type that they feel would be effective. They have taken surgery, radiation and targeted and immunotherapy off of his option list. We are watching and waiting and it's terribly frustrating. We have gotten the most extensive pathology and genetic testing available but still no answers.
My husband is 66 and has other health issues (COPD and peripheral neuropathy in his feet) so the doctors don't think chemo will be tolerated well by him.
I am a breast cancer survivor and although it's a tough experience…………nothing quite compares to the fear and frustration of being told you or a loved one has cancer but they don't know kind of cancer it is. When diagnosed my husband was said to be Stage IV, Terminal within months. That has now changed to Stage III 'stable disease'. His tumor is smaller but the general cancer activity (per the PET scan) is higher by quite a bit.
We're on the watch and wait plan. I'm very anxious about that 'non plan' but the doctors don't have any other alternatives for us. It sounds like your daughter is using chemo to slow the whole body progression of the cancer. Is that working and reducing her cancer burden? I hope so.
We have done lots of research and consulted multiple oncologists and one theory on CUP is that the cancer started somewhere in the body and that site of the cancer 'died'. But before it did, the cancer spread to another location (in your daughter's case the liver and bones, in my husband – his lung) and started to grow there. Because the original site no longer exists, they can't pinpoint the source or type. Anyway, that's on explanation we were given. I think it's also very possible that some people just don't fit the 'cancer mold' and their cancers appear different than others.
Will you share how your daughter found her cancer initially, what if any symptoms she has or had and how her treatments are working for her? I hope we'll stay in touch. I'm happy to share any news on my husband and would like to know how your daughter is doing. I'm afraid we are a small group….so maybe we can help each other to navigate this.
They say Cancer of Unkown Primary is rare (CUP), but I think it's just that the pathology and tests haven't caught up to some cancer types…….

Thu, May 16 11:59am · Tumor markers…CA 27.29 in Breast Cancer

During my last blood draw the tech had trouble too and it showed 'platlett clumping' (I can't spell that, dang)…..that can be a sign of lymphoma and as a breast cancer survivor I was very worried too. My doctor said that the bad blood draw can cause that. Good that you're going for another blood test Tumor marker blood tests can rise and fall with inflammation too I believe (as can results on PET scans be inflammation only and not cancer sometimes). The inflammation can be from something else (a virus etc). It's certainly not an exact science but just another tool.

Thu, May 16 9:10am · Tumor markers…CA 27.29 in Breast Cancer

From what I understand……….tumor markers via blood are one way doctors can see how well treatment is going or whether there is 'cancer' circulating in the blood. I have read though that it can have both false and positive results that are NOT the result of cancer, so getting a CT and following up is the best option. If you read up on this or talk with your doctors they will tell you it can be a sign of cancer or returning cancer but can also be other things.

Thu, May 9 8:07pm · Stage 2 breast cancer: What treatments decisions did you have to make? in Breast Cancer

Hello Penpen – I've read all of the responses here to your question and there's a lot of great information and insight for you here from women who had to face the same decision. So much depends on your cancer and your doctor's recommendations but as members have said, you must make the decision that you feel most comfortable with and that will come to you (it's hard though and you're not alone in feeling overwhelmed, it's a big decision). I chose bi lateral mastectomy and I am happy with my decision. I didn't struggle much because I'd been first diagnosed with Stage 0 cancer in my left breast and had a lumpectomy then two years later Stage 1 cancer showed up in the right breast. That is when I decided to remove them both. My cancer was lobular (not ductal) and it's an 'equal opportunity breast cancer invader' (ha ha). Lobular is more likely to appear in both breasts vs. one breast. I was given the choice of lumpectomy for the second appearance of cancer or a bi lateral mastectomy and I jumped at removing the breasts because I was concerned about having cancer appear in both breasts and the sneaky nature of the lobular type of cancer (grows in a linear fashion instead of lumps and harder to find). I had benign lumps removed twice when I was much younger as well and I really didn't find the mastectomy any more painful than the lumpectomies. There is a longer recovery and it is a more major surgery but still very manageable. I have heard that from many women. They are pretty good at mastectomies now. I didn't do reconstruction and that was a second choice that must be made. I didn't want foreign objects in my body (the implants) and the length of time for reconstruction and recovery for me was going to be harder (because I was an ex smoker of only a couple years they would not do an immediate reconstruction at the time of the mastectomy). I'm older (61 years now) and had this surgery 3 1/2 years ago….. I opted to have my breasts removed so I wouldn't worry quite so much about recurrence and perhaps not be as lucky as I was to find it early both times. My cancer had not spread to my lymph nodes and I didn't need radiation or chemo. I was, unfortunately, unable to take the hormone blocking AI drugs post mastectomy, so I have some worries in that department but I'm coming up on 4 years cancer free now and hoping to keep it that way. Research, talk to your doctors, keep sharing on this site and other support groups and follow your heart……we've all been where you are and it's a tough decision but one that you will come to you. Hugs……….

Sat, May 4 10:03am · FDA Expands Use Of Keytruda for NSCLC in Lung Cancer

We haven't talked with the doctors yet. We're due again in July for a scan. So far the cancer is actually getting smaller but we can't count on that. We take it day by day. I am going to reach out to the doctor about Keytruda and also a few other thoughts, things I found on this support site that might help. Hugs!